Managing
your health
a guide for people living with HIV
Production of Managing your health
has been made possible through
financial contributions from the Public
Health Agency of Canada
Mission Statement
CATIE champions and supports innovation and excellence
in knowledge exchange for the prevention of HIV transmission, and the care, treatment and support of people with
HIV by:
• collaborating with and building the capacity of front line
organizations to use knowledge effectively to respond to
the HIV epidemic;
• supporting and connecting people with HIV, other individuals, and organizations to develop, synthesize, share and
apply HIV knowledge;
• acting as a central contact point for the flow of comprehensive, accurate, unbiased, timely and accessible HIV
information and community-based knowledge.
Permission to Reproduce
This document is copyrighted. It may be reprinted and
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without prior permission, but permission must be obtained
to edit or otherwise alter its content. The following credit
must appear on any reprint: This information was provided
by the Canadian AIDS Treatment Information Exchange
(CATIE). For more information, contact CATIE at
1-800-263-1638, or www.catie.ca.
Disclaimer
Decisions about particular medical treatments should
always be made in consultation with a qualified medical
practitioner knowledgeable about HIV-related illness and
the treatments in question.
The Canadian AIDS Treatment Information Exchange
(CATIE) in good faith provides information resources to
help people living with HIV/AIDS who wish to manage their
own health care in partnership with their care providers.
Information accessed through or published or provided by
CATIE, however, is not to be considered medical advice.
We do not recommend or advocate particular treatments
and we urge users to consult as broad a range of sources
as possible. We strongly urge users to consult with a qualified medical practitioner prior to undertaking any decision,
use or action of a medical nature.
ii
We do not guarantee the accuracy or completeness of
any information accessed through or published or provided
by CATIE. Users relying on this information do so entirely at
their own risk. Neither CATIE nor the Public Health Agency
of Canada nor any of their employees, directors, officers or
volunteers may be held liable for damages of any kind that
may result from the use or misuse of any such information.
The views expressed herein or in any article or publication
accessed or published or provided by CATIE are solely those
of the authors and do not reflect the policies or opinions of
CATIE or the views of the Public Health Agency of Canada.
Managing your health, fourth edition
© 2009, CATIE. All rights reserved.
ISBN 978-0-9784654-3-8
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(aussi disponible en français ATI-40216)
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Dedication
Managing your health, fourth edition, is dedicated to the
determination and courage of the many lost to HIV/AIDS,
the perseverance of those who continue to confront its
many challenges, and the memory of Nitto Marquez, who
died on April 29, 2008. His commitment to support all
people living with HIV/AIDS is an inspiration that lives on.
MANAGING YOUR HEALTH
iii
Acknowledgements
Chapter Authors
Chapter 1 – Annika Ollner and David McLay
Chapter 2 – Derek Thaczuk
Chapter 3 – Evan Collins, MD
Chapter 4 – Alex McClelland
Chapter 5 – Devan Nambiar
Chapter 6 – Evan Collins, MD
Chapter 7 – John Maxwell
Chapter 8 – David Hoe
Chapter 9 – Paul MacPherson, MD
Chapter 10 – Derek Thaczuk
Chapter 11 – Derek Thaczuk
Chapter 12 – Evan Collins, MD
Chapter 13 – Deborah Randall-Wood
Chapter 14 – Deb Cameron, Eileen McKee, Kelly O'Brien,
Deborah Randall-Wood, Greg Robinson, Janet Wu,
Elisse Zack of the Canadian Working Group on HIV
and Rehabilitation
Chapter 15 – Shari Margolese
Chapter 16 – Shari Margolese
Chapter 17 – Alan Li, MD
Chapter 18 – Kath Webster
Chapter 19 – Louise Binder
Chapter 20 – Nitto Marquez
Chapter 21 – Paul Higgins
Chapter 22 – RuthAnn Tucker
Editorial Outline Review Committee
Gillian Bone
Shari Margolese
Paula Chabanais
Deborah Randall-Wood
David Fletcher, MD
Gregory Robinson, MD
Dominic Levesque
Derek Thaczuk
Laurette Lévy
Kath Webster
Alan Li, MD
Gordon Waselnuk
Mona Loutfy, MD
National Advisory Committee and Expert Review
Alberta Community Council on HIV (ACCH)
Asian Community AIDS Services (ACAS)
British Columbia Persons with AIDS Society (BCPWA)
Canadian Aboriginal AIDS Network (CAAN)
Canadian Association of HIV Clinical Laboratory Specialists
(CAHCLS)
Canadian Association of Nurses in AIDS Care (CANAC)
Canadian College of Naturopathic Medicine (CCNM)
Canadian HIV/AIDS Legal Network
Canadian HIV/AIDS Information Centre (CHIC)
Canadian Working Group on HIV and Rehabilitation (CWGHR)
Coalition des organismes communautaires québécois de lutte
contre le sida (COCQ-Sida)
Fife House
iv
Paul MacPherson, MD
Ontario AIDS Network (OAN)
Pacific AIDS Network (PAN)
Positive Women’s Network
Teresa Group
Toronto People With AIDS Foundation (TPWAF)
Editorial Review
Stephen Alexander
Jean Bacon
Kevin Barlow
Lucy Barney
Michael Battista
Glenn Betteridge
Laura Bisaillon
Julie Foreman
Dale Guenter, MD
Shariq Haider, MD
Keith Hambly
Rick Kennedy
Dale Kuehl
Paul Landers
Brynn Laurillard
Paul MacPherson, MD
Jane McCall
Doris Peltier
Deborah Randall-Wood
Stan Read, MD
Sean Rourke
Lindy Samson, MD
Paul Saunders
Trevor Stratton
Jim Truax
Karen Vance-Wallace
Sharon Walmsley, MD
Annette Wilkins
Jessica Yee
Focus Group participants
National Funder
Production of Managing your health has been made possible
through financial contributions from the Public Health Agency
of Canada.
Editorial
Darien Taylor
Derek Thaczuk
Zak Knowles
Kristin Jenkins
Margaret Bream – Copy editor
Maureen Davis – Index
Anna Kohn – Proofreader
Heather Ann Kaldeway – Web design
Manuel Rodenkirchen and Sheena Gibson
(Rodenkirchen Communication) – book design and layout
Guylaine Duval (St. Joseph Print Group)
Laurie Edmiston
Sean Hosein
Ed Jackson
David McLay
Jeff Reinhart
Tim Rogers
WWW.CATIE.CA • 1.800.263.1638
Contents
ix
Foreword by Mark
Wainberg, MD
xi
How to use this book
Coping with stress
Tattoos and piercings
Harm reduction as a tool to healthy living
53
1
Chapter 1
You’ve just been
diagnosed with HIV…
What is complementary and
alternative medicine?
Some examples of complementary and
alternative therapies
How to access and pay for complementary
and alternative therapies
Putting it all together: a personal perspective
You are OK …
You have a future
How this book can help you
5
Chapter 2
HIV... the basics
What is HIV?
What is AIDS?
What is a virus?
How is HIV transmitted?
How do you know if you have HIV?
How your immune system works
How HIV can make you sick
15
27
67
Chapter 4
Healthy Living
Eating well
Getting the vitamins and minerals
your body needs
Exercise
Chapter 6
Your emotional health
Self-esteem
Stress
Anxiety
Depression
Drug and alcohol abuse
Seeking emotional support
Seeking professional help
Chapter 3
Your healthcare team
Your healthcare professionals
Putting together your healthcare team
Building a healthy relationship
with your doctor
Chapter 5
Complementary and
alternative therapies
77
Chapter 7
Your sexual health
What is sexual health?
About safer sex
Preventing and treating sexually transmitted
infections in both partners
Sexual dysfunction
Relationship issues
MANAGING YOUR HEALTH
v
95
Chapter 8
Positive prevention
What is positive prevention?
Why is positive prevention important?
Principles of positive prevention
Some things to think about
105 Chapter 9
Monitoring your health
Why your health is monitored
Monitoring your HIV infection
Other things to monitor
How your health is monitored
Tests specific to women
Tests specific to men
125 Chapter 10
Treatments
Treatment decisions
Before you start
When to start?
Anti-HIV drugs
Choosing treatment
Starting treatment
Making it work
Changing treatment
Taking breaks and stopping treatment
145 Chapter 11
Side effects and symptoms
General advice for side effects
and symptoms
Digestive problems
Metabolic problems: fat redistribution,
heart problems and diabetes
Bone problems
Liver problems
Pancreatitis
Skin problems
vi
Muscle problems
Headaches
Problems with mental and emotional health
Peripheral neuropathy
167 Chapter 12
HIV-related infections
and cancers
Life-threatening infections
Co-infections
Other infections
Vaccinations
Cancers
181 Chapter 13
Hospital stays
The hospital environment
Preparing to go to the hospital
Being admitted
Communication is the key
Going home
Instead of going to a hospital
191 Chapter 14
HIV and rehabilitation
Living with the challenges of HIV
What is rehabilitation?
How can rehabilitation services help me?
The basic components of a
rehabilitation program
Emerging issues in HIV and rehabilitation
Your role on the rehabilitation
healthcare team
WWW.CATIE.CA • 1.800.263.1638
207 Chapter 15
Women and HIV
263 Chapter 19
Access to treatment
HIV in women in Canada
How is HIV different for women and men?
Psychosocial issues for women living
with HIV
Your healthcare team
Gynecological care of women with HIV
Pregnancy and HIV
Birth control
Menstruation and menopause
Dating, sex and relationships
How drugs are approved for sale in Canada
How to access approved prescription drugs
How to access unapproved drugs
How to access non-prescription medications
and other kinds of treatment
273 Chapter 20
Money matters
Continuing to work after an HIV diagnosis
Disability programs
Income replacement and other financial
assistance programs
Covering medical expenses
227 Chapter 16
Children and HIV
What if my child is HIV-positive?
HIV in children
HIV treatment for children
Talking to children about HIV
291 Chapter 21
Legal issues
237 Chapter 17
Immigrants, refugees and
non-status people with HIV
The Canadian immigration system and HIV
Immigrants, refugees and non-status people
Immigration and HIV testing
Services available to immigrants, refugees
and non-status people with HIV
249 Chapter 18
HIV and aging
The challenge of HIV in an aging population
Is it HIV or is it age?
Screening tests
Coping with loss
Financial issues
Legal information and legal advice
HIV transmission and the criminal law
Privacy and confidentiality
How to fight discrimination
Forced-testing laws
Lawyers and legal aid
Planning ahead
309 Chapter 22
Housing
Types of housing
Housing that meets your needs
How to access housing
How to keep your housing
317 Personal health record
321 Index
MANAGING YOUR HEALTH
vii
viii
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Foreword
About the author
As a researcher who has been working with people
Mark Wainberg is an
with HIV for 25 years, I have often asked myself what
internationally recog-
it would be like to be suddenly informed I was HIV-
nized scientist in the
positive. How would I react? Would I be devastated?
field of HIV. He
Would I believe my life had changed permanently for
served as president
the worse? Would my relationships with loved ones
of the International
come to an end? How would I respond?
AIDS Society
These questions are difficult, but patients newly
between 1998 and 2000 with responsibilities
diagnosed with HIV should be reassured that their
that included organization of the 13th
lives need not change in many ways. In fact, I believe
International Congress on AIDS in Durban,
people who are diagnosed with HIV disease should
South Africa, in 2000. He was co-chair of
be told that they will continue to have full, productive
the 16th International AIDS Conference that
lives. The reason is simple. The new antiretroviral
took place in Toronto in 2006.
drugs now in use do an excellent job at preventing
He is well-known for his initial identifica-
HIV from replicating and are far less toxic than the
tion of 3TC as an antiviral drug, in collabora-
first generation of anti-HIV drugs developed before
tion with BioChem Pharma Inc. in 1989, as
the mid-1990s. Patients today can expect their viral
well as for multiple contributions to the field
loads will remain suppressed enough to prevent
of HIV drug resistance. Dr. Wainberg has
serious consequences of HIV infection.
now turned his attention to novel concepts
This new edition of CATIE’s Managing your
in prevention of HIV infection in developing
health deals with issues of HIV prevention, awareness
countries, such as vaginal microbicides and
and treatment. It provides answers to almost any
pre-exposure prophylaxis.
MANAGING YOUR HEALTH
ix
question an HIV-positive person might ask, and does so in a way that’s easy to
read and understand. It provides comprehensive answers to almost any question
patients are likely to have immediately after their diagnosis, as well as over the
months and years to come. Managing your health makes the important point that
patients play key roles in their own health management, emphasizing that successful
HIV treatment happens as a partnership between people living with HIV, their doctors,
counsellors and other caregivers.
In a way, the life of every person treated for HIV disease represents an experiment
in progress, since we simply do not know for how long our drugs will work well.
After all, the people who have lived longest with HIV, including those on antiretroviral
drugs, have now been infected for 25 years or less. The best advice to give to an
HIV-positive individual is to live life optimistically and responsibly.
There are many new tools in the fight against HIV, and it is safe to think even
more progress will be made in the development of safe, effective treatments in
the future.
We all share the responsibility to try to turn the tide on this epidemic, not only
by the development of newer and better drugs, but also through personal and
public health measures that will prevent the spread of this virus.
Dr. Mark A. Wainberg
• Director of Research at the Jewish General Hospital, Montreal
• Director of the McGill University AIDS Centre
• Professor of Medicine and Microbiology and Immunology, McGill University,
Montreal
x
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How to use
this book
Welcome to the fourth edition of Managing your health: a guide for people living
with HIV, published by the Canadian AIDS Treatment Information Exchange (CATIE).
Since it was first published in 1993, Managing your health has become a “must
read” for people living with HIV and those around us who seek reliable information
in plain language delivered from the perspectives of people living with this disease.
This edition has a number of new features and a fresh new look. You will notice
that each chapter is written by a different author, many of whom are people living
with HIV, showcasing the remarkable diversity and expertise of our communities.
We have included chapter summaries, highlighted key messages and added fold-out
cover features, including a glossary. We hope these features will help you orient
yourself and navigate easily through Managing your health. We have responded to
your requests to make Managing your health more of a workbook, in which you can
track your own personal health information, write notes and make the book your
own. We have also included a personal health record, which you can use to keep
a record of your doctors, laboratory results, anti-HIV drugs and any side effects or
symptoms you might want to discuss with your doctor. Managing your health is
also available on CATIE’s website where there are interactive links, plus healthmonitoring and information features that help you personalize your copy.
Managing your health is based on values central to CATIE. This book reflects our
beliefs that:
• people with HIV can do many things to ensure that they are as healthy as
possible, for as long as possible;
• people with HIV are equal partners with their healthcare providers when it
comes to making decisions about their health;
• knowing about HIV disease and what you can do to stay healthy gives you greater
power and control in a situation where you might otherwise feel powerless.
MANAGING YOUR HEALTH
xi
Though Managing your health is a big book, it doesn’t pretend to cover everything you will ever need to know about living with HIV. But it does provide a guide to
some of the most important issues you may be struggling with, and some of the
questions you may have now or in the future.
Information overload is a big challenge for people with HIV, especially if you
have just found out your status. We have tried to put this book together so that you
can pick and choose, taking as much information as you need. Some people read
Managing your health from beginning to end. Others pick it up whenever needed
and consult it about a particular topic they want to know more about. Feel free to start
anywhere you like, read the information that interests you and skip the information
that isn’t relevant to you. And remember that Managing your health is really a starting
point for your questions. CATIE has many more resources in print and online that
cover other topics or provide more in-depth information on the topics covered in
this book.
We have made every effort to ensure the information in Managing your health
will not become outdated quickly. Nonetheless, information about HIV changes very
rapidly, so we recommend that, in addition to reading Managing your health, you
also talk about your questions and issues with your doctor or a worker at your local
AIDS service organization. You can also contact CATIE’s free HIV information service
from Monday to Thursday at 1-800-263-1638, by e-mail at [email protected] or on the
web at www.catie.ca.
xii
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You’ve just
been diagnosed
with HIV…
If you’ve recently found out you have HIV, you are
probably starting to look around for some information
on what this means. You might also want to know what
you can do about it. Reading this chapter is an excellent
place to start. You’re taking the first step on the life-long
journey of learning to live with HIV.
1
CONTENTS
• You are OK…
• You have a future
• How this book can
help you
About the authors
Annika Ollner and David McLay joined the CATIE
team in early 2006 and worked together on several
projects to provide health information to people with HIV.
Annika’s adventures in HIV have taken her from the campus of McGill
University in Montreal where she advocated for better access to HIV drugs
in the developing world, to the towns of the western African country of
Guinea, where she participated in a capacity-building internship around
HIV prevention.
David’s first connection with the HIV community was also in Montreal
where he became involved at AIDS Community Care Montreal, first as
a user of their services and then as editor of their monthly newsletter.
David, in his role as managing editor, oversees many CATIE publications,
including The Positive Side.
MANAGING YOUR HEALTH
1
1
YOU’VE JUST
BEEN DIAGNOSED
WITH HIV
You are OK…
The first thing you need to know is that you are OK. You are not going to die
right away. You do not have to tell everyone you are HIV-positive. But most
importantly, you do not have to pretend that everything is as it was before,
because it is not. Just remember, your life is not over. You have plenty of time
to deal with this news.
Receiving a diagnosis of HIV changes your life forever. It is normal that you
will feel a lot of different emotions as you come to accept the idea of living with
It is normal that you will
feel a lot of different
emotions as you come to
accept the idea of living
with HIV.
HIV. How are you feeling right now? Maybe you’re calm, maybe you’re freaked
out, or maybe you were OK until someone made a thoughtless remark. Maybe
you’ve been drinking and partying a bit too much or have retreated into your
shell but now feel you can’t do that forever.
Whatever you are feeling, it is really important to tell yourself that it’s OK
and to give yourself permission to feel those feelings. It’s a good idea to let
them out—be angry, be sad, be confident, be calm, be afraid, be numb. If you
become overwhelmed by your feelings, try to be careful not to hurt yourself or
those around you. Consider getting help from professional counsellors, from
friends and family, and especially from other people living with HIV. Talking
about your feelings can help a lot.
You have a future
You may not believe it right now, but HIV is not a death sentence. There have
been significant advances in the care and treatment of HIV. People with HIV
now live long, productive lives. In fact, doctors think that with treatment, many
People with HIV
now live long,
productive lives.
people with HIV might live out their natural lifespan.
So, since you’re likely to be around a while, you have a future. You can still
have sex, you can still have meaningful relationships, you can still have a family
and you can still have a career. Maybe you are thinking there is no point in
pursuing any of the goals you had before being diagnosed. Tell yourself it’s
OK to feel discouraged right now, but don’t give up on yourself or your dreams.
If you're feeling sad and hopeless or if you don’t enjoy the things you normally
2
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do, and the feelings are not going away, you might want to speak to your doctor
about it. You may be experiencing depression. This is normal and there are
treatments that can help you.
Are there going to be a lot of new challenges? Yes—both health related
1
YOU’VE JUST
and social—but there are services and individuals available to help you. There
BEEN DIAGNOSED
are groups called AIDS service organizations, sometimes referred to as ASOs,
WITH HIV
that help people with HIV—people like you. AIDS service organizations are also
a good way to meet other people living with HIV. You might not be ready to
contact an AIDS service organization yet, and that’s fine. Take your time. They
will be there to help you when you are ready to talk with someone.
You might find yourself wishing you had never found out about your diagnosis. It’s true that it is hard to hear at first. But the fact that you have been
diagnosed means that you can take steps to take care of yourself. Knowledge
is power. It’s a cliché, but with HIV it’s true. By knowing your status, you can
decide how you want to live with the virus. Maybe you won't want to know too
There are groups
called AIDS service
organizations, or ASOs
for short, that help
people with HIV.
much at first, but as time goes by, have confidence that you'll learn what you
need to, and you'll find your own way of living with HIV.
How this book can help you
Managing your health will take you through the steps you need to know about
in order to take care of yourself as you learn to live with HIV. Some of the first
things you might consider doing are locating a doctor who has experience
treating people with HIV, connecting with services for people with HIV and
learning how to keep yourself and the people around you healthy. Managing
your health chapters that you might want to look at next include Chapter 2,
HIV… the basics, and Chapter 3, Your healthcare team.
This chapter is adapted from the CATIE publication Just diagnosed with HIV.
The fact that you
have been diagnosed
with HIV means that you
can take steps to take
care of yourself.
MANAGING YOUR HEALTH
3
1
YOU’VE JUST
BEEN DIAGNOSED
WITH HIV
Resources
Just Diagnosed
Online learning module for people who have recently been diagnosed
with HIV
Living with HIV: starting points
Easy to read primer on viral load, CD4+ cell counts and healthy living
ASO411
A listing of ASOs and other HIV-related services throughout Canada
Managing your health
(www.aso411.ca)
will take you through the
These and many other relevant resources can be accessed on CATIE’s website
steps you need to know
(www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by
about in order to take
calling CATIE at 1-800-263-1638.
care of yourself as you
learn to live with HIV.
4
NOTES
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2
HIV…
the basics
This chapter explains some basic but complex issues,
including how your immune system works and the way
that HIV can make you sick. We encourage you to
browse these pages to understand more about topics
such as CD4+ cells, seroconversion and other key
concepts that will also help information in other chapters
fall into place.
CONTENTS
• What is HIV?
• What is AIDS?
• What is a virus?
• How is HIV transmitted?
• How do you know if you
have HIV?
• How your immune
system works
About the author
Derek Thaczuk has worked and volunteered within
the HIV community since his own diagnosis in
• How HIV can make
you sick
1992. He has provided practical support and home
care, co-chaired the Ontario HIV Treatment Network,
and served as treatment resources co-ordinator at the Toronto People with
AIDS Foundation. Derek currently works as a freelance writer and editor
for CATIE and other organizations to bring plain-language, understandable
health and treatment information to people who are living with HIV.
MANAGING YOUR HEALTH
5
2
HIV… THE BASICS
What is HIV?
HIV stands for human immunodeficiency virus. The term immunodeficiency
means a weakened immune system. People who have been infected with HIV
are called HIV-positive (sometimes written: HIV+).
HIV is a virus that weakens your immune system, which is the internal system that defends your body against disease. Your immune system is supposed
HIV is a virus that
weakens your immune
to protect you from infections, but HIV can sneak past it and then attack your
body from the inside. If your immune system becomes weak enough, you can
become sick from other infections.
system, which is the
internal system that
defends your body
What is AIDS?
AIDS stands for acquired immunodeficiency syndrome. If HIV is not treated
against disease.
with anti-HIV drugs, your immune system generally becomes weaker over time.
If your immune system
Eventually, you can become sick with a life-threatening infection, at which point
becomes weak enough,
you can become sick from
you are said to have AIDS.
With proper treatment with anti-HIV drugs, most people with HIV can avoid
getting AIDS and stay healthy for a long time.
other infections.
What is a virus?
Viruses (like HIV) are strange. They are the very simplest and smallest of all
living things—even smaller than bacteria and other germs. In fact, it’s hard to
say whether viruses even count as living things at all, since they can’t reproduce
on their own. To reproduce, viruses need to infect living cells and fool them
into making more viruses. These newly formed viruses then go on to infect
HIV is a virus that can
infect cells of the immune
system, the very cells
other cells.
HIV is a virus that can infect cells of the immune system, including the allimportant CD4+ cells—the very cells that are supposed to fight off infections.
That’s what makes HIV so dangerous.
When describing how viruses like HIV reproduce, we actually use the
that are supposed to
science-fiction-sounding word replicate. In a way, viruses really are just ultra-tiny
fight off infections.
robots—machines that do little more than make more of themselves. Unfortunately,
in the process, they can cause great damage to the body they’ve infected.
6
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How is HIV transmitted?
HIV infection happens when enough HIV from an HIV-positive person gets into
an HIV-negative person’s body. This can’t happen through casual contact, such
as shaking hands, sneezing or touching a doorknob or toilet seat. HIV infection
2
HIV… THE BASICS
only happens when body fluids with a high amount of virus get into the other
person’s body. Only five body fluids can contain enough virus to infect someone
else: blood, semen (including pre-cum), vaginal fluid, anal fluid and breast milk.
Infection can happen during sex, during childbirth and through needle use
(by sharing used needles or “works”).
There is little or no risk of HIV being transmitted through unbroken skin.
However, transmission can happen much more easily through the mucosal
membranes. These are the wet linings of body cavities like the vagina, rectum
and urethra (the “pee hole” in a man’s penis or a woman’s vulva). HIV can infect
cells in the lining of the vagina, rectum and penis even if the tissues are healthy.
Having a sexually transmitted infection like herpes, gonorrhea or syphilis can
make it even easier to transmit (or be infected by) HIV. So can any other
HIV infection happens
when enough HIV
from an HIV-positive
person gets into
an HIV-negative
person’s body.
damage to these tender tissues, which can easily happen during sex.
Sexual activities that can easily lead to HIV transmission are called high
risk. High-risk sexual activities include vaginal or anal intercourse without a
condom. Some sexual activities, such as oral sex, pose only a low risk of HIV
Having a sexually
transmission. While these activities can lead to HIV transmission, the chances
transmitted infection like
are much smaller than they are with high-risk activities. Other sexual activities
pose no risk for HIV transmission. These include kissing, hugging, mutual
herpes, gonorrhea or
syphilis can make it even
masturbation and massage.
HIV can also be transmitted if you share needles or other equipment to
inject drugs such as heroin, crack, steroids or hormones.
easier to transmit (or be
It is important to be aware of these risks so that you can prevent spreading
infected by) HIV. So can
HIV to your sexual partners or anyone you share drugs with. It is equally impor-
any other damage to the
tant for you to protect yourself from reinfection with HIV, as this could further
damage your immune system or expose you to a strain of HIV that is resistant
to certain kinds of anti-HIV drugs (see Chapter 10, Treatments).
tender genital tissues,
which can easily happen
during sex.
MANAGING YOUR HEALTH
7
2
HIV… THE BASICS
How do you know
if you have HIV?
In order to find out if you have been infected with HIV, you need to have a
blood test. This blood test, often incorrectly called an AIDS test, is actually a
test for HIV antibodies.
Antibodies are produced by your body as a reaction to infection with HIV.
An HIV antibody test looks for the presence of these antibodies in your blood.
A needle is inserted into a vein in your arm and a sample of your blood is taken.
In order to find out if
It is sent to a lab to be tested for the presence of these antibodies. After about
you have been infected
three weeks, the test results come back to the office where you had the test done.
with HIV, you need to
have a blood test for
HIV antibodies.
However, there are new rapid HIV tests available. The entire process with
the new tests, including taking a drop of blood from your finger, along with HIV
counselling before and after the test, takes about 20 minutes. The results that
you receive from the rapid test are very accurate.
Since HIV antibody tests look for antibodies and not the virus itself, you
need to wait to be tested until HIV antibodies are made by your body.
The period of time from when you are infected with HIV to when antibodies
A positive test result
appear in your blood is often called the window period. During the window
means that you have
period, the HIV test may give a negative result even though you have HIV.
been infected with HIV.
You can transmit the
Newer methods of testing are shortening the window period. Talk to your doctor
or HIV tester about the window period for the test being used.
A positive test result means that you have been infected with HIV. You can
virus to people if you
transmit the virus to people if you have unsafe sex or share needles with them.
have unsafe sex or share
A positive test does not mean that you have AIDS or that you will get it. It does
needles with them.
not give you any additional information about the state of your health.
How your immune system works
Germs are all around us (and often inside us). They’re not always bad. Some
are even helpful: for instance, your intestinal tract is loaded with “friendly”
bacteria that you need for proper digestion.
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Many kinds of germs, however, can make you sick—from mild, passing
illnesses like a cold, to serious or even life-threatening infections. Fortunately,
your immune system usually protects you from germs by recognizing that they
don’t belong in your body and destroying them.
2
HIV… THE BASICS
Your body’s first line of defence is the skin. The skin covers the outside of
your body, acting as a physical barrier to germs. If there are breaks in your skin,
even very small ones, they can provide vulnerable spots where viruses and
other germs can enter the body.
Your mucous membranes are the soft, wet linings of your mouth, nose,
genitals and anus. The mucous membranes also defend your body on the cel-
Your immune system
lular level against germs. This cellular-level defence is called mucosal immunity.
usually protects you
But mucous membranes are not a perfect barrier. Small breaks and thinning
in these membranes can create entry points into the inside of your body for
from germs by
recognizing that they
viruses and germs.
Luckily, there’s far more to the immune system. The immune system is
don’t belong in your
made up of chemicals, cells, tissues and organs. The most important elements
body and
are white blood cells. These white blood cells patrol the body, moving through
your blood and lymphatic system.
destroying them.
Your circulatory system, made up of your heart and blood vessels, carries
blood to all the organs and tissues of the body. Your lymphatic system carries
a clear fluid called lymph to different parts of the body. Lymph sweeps germs
into the lymph nodes located in your armpits, neck, abdomen and groin. There,
immune cells ambush the germs.
When you’re fighting off the flu or other infection, you can often feel swollen
lymph nodes in your throat and groin. This is a sign that your immune system is
CD4+ cells play a
actively fighting the infection.
central role in the
CD4+ cells
Different kinds of white blood cells work as a team to recognize and destroy
immune system.
intruding germs. Specialized white blood cells also search for any of your own
cells that are already infected. They destroy these cells to prevent infection from
spreading further.
MANAGING YOUR HEALTH
9
2
HIV… THE BASICS
CD4+ cells play a central role in the immune system. They’re often described
as the quarterbacks or generals of the body’s defensive team or army. If you’re
not big on sports or the military, you can just think of CD4+ cells as central to
fighting off germs. CD4+ cells help recognize infection. They also co-ordinate
all the other parts of the immune system to provide an organized response.
How HIV can make you sick
When the immune
system becomes
weakened enough by
HIV infection, other
infections can become
serious problems.
Unfortunately, CD4+ cells are also one of HIV’s favourite targets. HIV attacks
and destroys CD4+ cells, one of the most important parts of your immune
system. This eventually leaves your immune system weak and unable to
defend you against serious illnesses.
The body fights back by constantly producing new immune cells. However,
if untreated, over time, the virus tends to win out. The immune system becomes
less and less able to suppress HIV and other infections. It also becomes less
able to control the spread of certain types of cancer cells. When the immune
system becomes weakened enough by HIV infection, these other infections
can become serious problems.
If HIV is not diagnosed or is not treated with anti-HIV drugs, it moves or
progresses through several distinct phases. Some people progress very
quickly, while others live with HIV for many years without developing a lifethreatening infection.
With HIV treatment now available, most people remain healthy and do not
go through all of these stages.
First stages of HIV infection
Primary infection refers to the time when you’re first infected with HIV. Many
people are not aware that they are even infected with HIV at this point.
Nonetheless, during this stage the virus multiplies rapidly. Within two to four
weeks after infection, you may experience flu-like symptoms such as fatigue,
fever, sore throat, swollen lymph nodes, headache, loss of appetite or skin
rash. This illness usually lasts less than two weeks, although it can last as long
as 10 weeks. (Not everybody has these symptoms, so they’re not a reliable
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way to tell whether or not you’ve been infected.)
During this period, the immune system is learning to recognize HIV. It has
not yet developed killer proteins known as antibodies to attack the virus in any
significant way. This means that:
2
HIV… THE BASICS
• the amount of virus in your blood may be very high;
• your CD4+ counts may drop until your body responds to the
new infection;
• standard HIV tests could show that you are not infected even though you
actually are. This is because the tests look for HIV antibodies, which your
body hasn’t developed at this stage;
• you can still pass HIV on to someone else. In fact, you are most likely to
pass the virus on to others when you’re newly infected, because there’s
so much HIV in your body.
Within two to four
weeks after infection,
you may experience
When your body develops antibodies to HIV, this is known as seroconversion.
flu-like symptoms such
This usually happens one to three months after infection. The blood test for
as fatigue, fever, sore
HIV, which actually looks for the antibodies, not the virus itself, will only give
throat, swollen lymph
positive results after you seroconvert.
Around this time, the amount of virus in your blood (known as your viral
load) will come back down after the high spike seen during the primary
infection period.
nodes, headache, loss of
appetite or skin rash.
During this period,
Next stages of HIV infection
You may feel perfectly well for a long time during the stage of HIV infection that
follows seroconversion. Although your immune system hasn’t eliminated the
infection, it is able to more or less hold its own against it, meaning the virus
the immune system
is learning to
recognize HIV.
and your body now co-exist in a kind of standoff. Your CD4+ cell counts and
viral load will remain relatively stable, although your viral load may go up if
you’re fighting off other infections such as a cold or the flu. You will not have
symptoms of HIV disease, which is why this stage is sometimes called asymptomatic infection.
This is the longest stage of HIV infection (see graph on following page). In
many people, it can last 10 or more years, while in others, it may be a shorter
period of time. During the asymptomatic infection phase, HIV is rapidly making
MANAGING YOUR HEALTH
11
2
HIV… THE BASICS
copies of itself (replicating) and infecting new CD4+ cells. Your body is trying
to counterbalance this loss of CD4+ cells by creating new, healthy ones. As
long as your body can replace those CD4+ cells infected by HIV with healthy
ones, your immune system will remain strong. In most cases however, if left
untreated, HIV eventually starts to win this battle.
The strength of your immune system is measured by your CD4+ cell count
(see Chapter 9, Monitoring your health).
As the virus overburdens your immune system, your CD4+ cell count
drops and you are at increased risk for developing symptoms of HIV infection.
During the asymptomatic
These can include swollen lymph nodes, night sweats, fever, diarrhea, weight
infection phase, HIV is
loss and fatigue. You may develop infections like thrush or persistent vaginal
rapidly making copies of
itself (replicating) and
yeast infections. These are all signs that HIV infection is progressing and
requires treatment. For more information on infections associated with HIV
infection, see Chapter 12 (HIV-related infections and cancers).
infecting new CD4+ cells.
Your body is trying to
PROGRESS OF TYPICAL UNTREATED HIV INFECTION
counterbalance this loss
of CD4+ cells by creating
new, healthy ones. As
long as your body can
replace those CD4+ cells
infected by HIV with
healthy ones, your
immune system will
remain strong.
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AIDS
If your HIV infection is not treated with anti-HIV drugs, you may progress to
the stage known as AIDS. Experts have created a list of AIDS-defining illnesses
that are used in the diagnosis of AIDS and in statistics to monitor the epidemic.
2
HIV… THE BASICS
These illnesses are limited to more serious life-threatening infections, including
bacterial infections such as Mycobacterium avium complex (MAC), fungal
infections such as Pneumocystis pneumonia (PCP) or cancers such as nonHodgkin’s lymphoma and Kaposi’s sarcoma (see Chapter 12, HIV-related
infections and cancers).
For most people, AIDS is an even more frightening and loaded term than
HIV. Before effective anti-HIV drugs were available, progressing to AIDS and
eventually death was the inevitable outcome of HIV infection for most people.
Many people now refer
to HIV disease or chronic
However, with effective anti-HIV drugs, HIV disease can be controlled and does
HIV infection, reflecting
not progress toward life-threatening illnesses. Anti-HIV drugs can slow down or
the fact that AIDS is now
halt the progression toward AIDS in people with HIV who are healthy and it can
also help people who have become sick with AIDS-related life-threatening
infections to get better and stay healthy.
a much less common
outcome of HIV infection.
The way that we refer to HIV and AIDS reflects this new reality. Many
people now refer to HIV disease or chronic HIV infection, reflecting the fact that
AIDS is now a much less common outcome of HIV infection. The terms HIV
disease or chronic HIV infection can describe anyone, treated or untreated,
at any stage of infection, neatly sidestepping the HIV-versus-AIDS question.
Resources
Basic Facts about HIV and AIDS
Factsheets on the basics of HIV prevention
What You Need to Know about HIV and AIDS
Online learning module for everyone on the basics of HIV
HIV in Canada
Factsheets on the HIV epidemic in Canada
These and many other relevant resources can be accessed on CATIE’s website
(www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by
calling CATIE at 1-800-263-1638.
MANAGING YOUR HEALTH
13
2
NOTES
HIV… THE BASICS
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3
Your
healthcare team
Over time, you will work with many different healthcare
professionals to help you live well with HIV. This chapter
discusses the different players on your healthcare
team—doctors, nurses, pharmacists and other key
professionals—and how to maintain a productive and
healthy relationship with them.
CONTENTS
• Your healthcare
professionals
• Putting together your
healthcare team
• Building a healthy
relationship with
your doctor
About the author
Evan Collins is a doctor, psychiatrist, researcher,
consultant, advocate and person living with HIV.
About
the author
His involvement
with HIV/AIDS dates back to 1984
Dr
MacPherson
is an
Assistant
of Medicine
when
he joined the
board
of theProfessor
AIDS Committee
of
and
a
specialist
in
the
Division
of
Infectious
Diseases
at
the
Toronto. Over the years, he has served on numerous boards and commitOttawa
Hospital
Campus.
His community
clinical practice
is
tees, including the
CATIE
board General
of directors,
and was
co-chair
to the
treatment
patients
with HIVas a
for AIDS 2006. primarily
He worksdedicated
as a doctor
at Hassle
FreeofClinic
in Toronto,
infection.
Heinisaalso
appointed
to the
Deptprogram,
of Biochemistry,
psychiatrist
community
mental
health
and as aMicrobiology
policy and
and
Immunology
at
the
University
of
Ottawa
and
is
a
Staff
Scientist
at the
organizational development consultant. He currently is President of the
Ottawa
Research
Institute.
Hisisprimary
research NGO
focusdelegate
is on underOntario Health
HIV Treatment
Network
and
North American
for
standing
at
the
molecular
level
how
HIV
disables
the
immune
system.
the Board of UNAIDS.
MANAGING YOUR HEALTH
15
3
YOUR
HEALTHCARE TEAM
Your healthcare professionals
Doctors
Medical doctors, also called physicians, play key roles in the lives of people
with HIV. Even if you do not take anti-HIV drugs, you will need a doctor to
monitor your health and your HIV infection. It is important that you are treated
by a doctor who has experience treating people with HIV. Some people with
HIV see a family doctor (general practitioner or GP) who specializes in HIV, and
these doctors are sometimes called HIV primary care physicians. Others see a
It is important that you
are treated by a doctor
specialist in infectious diseases or immunology who treats their HIV, while their
family doctor deals with non-HIV-related problems like colds or flu.
In addition, you may have other specialists like cardiologists (heart doctors),
who has experience
dermatologists (skin doctors), gynecologists (doctors who look after women’s
treating people with HIV.
reproductive health) or obstetricians (doctors who care for pregnant women)
for problems that may or may not be associated with HIV. You might see
these doctors in a private office, clinic or hospital, by consultation or on an
on-going basis.
You may also see other doctors on a one-time or short-term basis, such
as in an emergency room, walk-in clinic or a sexual and reproductive health
clinic. This will especially be the case if you live in a community where it is hard
to find a family doctor. Whichever combination of doctors you have, ensure you
give them permission to communicate with each other to allow them to work
together in your best interest.
If you are seeing different doctors at different times, it is good to know
some of your own medical details. This could include:
• details of your past medical history, such as surgeries, hospital stays,
significant illnesses and any history of illnesses in your family;
• any allergies you have;
• results of any medical tests you have had, such as blood tests;
• all the medications you take, including prescription and non-prescription
drugs, herbs and supplements.
Sometimes it is good to keep this written down in your own personal health
record (see page 317) and carry it with you to appointments.
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Your personal health record
It’s a good idea to keep all of your health information together in one
place. A personal health record makes it easier to keep track of your
prescriptions and appointments, to collect and review your various test
3
YOUR
HEALTHCARE TEAM
results and look for trends over time. You can record information in case
of an emergency, a list of your healthcare providers, your allergies and
the questions you want to raise with the various members of your
healthcare team. See page 317 for a sample personal health record.
Feel free to use it as a starting point and adapt it to your needs.
Nurses and nurse practitioners
Nurses play a vital role in your health care. The nurse at a clinic or hospital can
often provide the information, counselling or practical assistance like filling out
forms that the doctor may be too busy to do well. Some clinics also have
nurse practitioners. They are specially trained nurses who can diagnose and
treat many diseases on their own.
To avoid unexpected
interactions among your
drugs, it’s best
to get them all from
a single drugstore,
especially if you are
filling prescriptions from
more than one doctor.
Pharmacists
Pharmacists dispense prescription drugs from a drugstore (pharmacy). They
keep careful records and can help you keep track of your drugs, avoid allergies
or interactions between drugs, and provide useful information on taking your
drugs regularly without any missed doses. To avoid unexpected interactions
among your drugs, it’s best to get them all from a single drugstore, especially
if you are filling prescriptions from more than one doctor. Because pharmacists
are generally more available than doctors, many people with HIV rely on their
pharmacists for information about HIV and their treatment. Pharmacists are
also experts on getting your drugs paid for by government programs and
insurance companies.
Dentists
Unfortunately, there are a lot of dental problems related to HIV disease and
the drugs used to treat it. It is important that you have a good dentist who is
MANAGING YOUR HEALTH
17
3
YOUR
HEALTHCARE TEAM
knowledgeable about HIV and knows that you have HIV. If you don’t have
dental coverage though a health plan, some public health departments and
university dentistry programs have clinics that provide free dental services.
Many people dislike going to the dentist, but good dental health is extremely
important for people living with HIV. Try to take good care of your teeth by
brushing and flossing and seeing a dentist regularly.
Rehabilitation therapists
Physiotherapists, occupational therapists and other rehabilitation therapists play
It is important to have
important roles in the management of many chronic diseases, including HIV
a good dentist who is
(see Chapter 14, HIV and rehabilitation).
knowledgeable about
HIV and knows that
you have HIV.
Nutritionists and dietitians
Healthy eating is vitally important when living with HIV, not only to maintain your
immune system but to prevent or treat many side effects of anti-HIV drugs.
Nutritionists, dieticians and therapists who give advice about vitamins and supplements can be an important part of your healthcare team (see Chapters 4, Healthy
living, 5, Complementary and alternative therapies, and 13, Hospital stays).
Social workers and case managers
Social workers and case managers are professionals who work in clinics, hospitals and many community organizations. They can help in arranging benefits,
housing and other forms of practical assistance. They know the health and
social service systems and can help you navigate them to get what you need.
They often do counselling and psychotherapy as well.
Community health representatives
Community health representatives are healthcare workers who are mainly located
in First Nations and Inuit communities. They are employed by the Band Council
or regional health board. The role of the community health representatives will
vary depending on the availability of other healthcare workers and how close
the community is to a hospital. Generally, community health representatives
provide health information, counselling and first aid. They also make referrals
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and appointments, dispense some prescription drugs, provide advocacy and
advise on government policy and programs. Not all community health representatives will have the same level of knowledge of HIV or be comfortable with
3
YOUR
HIV-related issues.
In some areas Aboriginal health workers, wellness facilitators or community
HEALTHCARE TEAM
health workers may carry out similar work to community health representatives.
Mental health professionals
Doctors, nurses and social workers often help to support your mental and
emotional health. Sometimes, you may need the services of more specialized
Sometimes, you may
mental health professionals such as psychologists, psychiatrists, counsellors
need the services of
and others. They can provide individual or group therapy for emotional problems
(see Chapter 6, Your emotional health).
more specialized mental
health professionals
Complementary and alternative therapists
There are many different types of complementary and alternative therapists
who can offer non-drug therapies to help support your immune system, treat
symptoms of HIV disease, or help your body deal with the side effects of anti-
such as psychologists,
psychiatrists, counsellors
and others.
HIV drugs. These therapists include elders and traditional healers working in
Aboriginal communities and they can play important roles in your health care.
They are often outside of the formal healthcare system, so make sure these
therapists know about your other healthcare providers and treatment plans,
and vice versa (see Chapter 5, Complementary and alternative therapies).
Administrative staff
The administrative staff (receptionists, secretaries and office managers) at your
clinic, hospital or doctor’s office are also an important part of your healthcare
team. They control access to your healthcare providers and are often the
“power behind the throne.” In addition to getting you appointments, they may
be able to arrange many of the other things you need, such as prescription
renewals, forms and referrals, without your having to see the doctor. These
people are often taken for granted, but it is often in your best interest to treat
them well.
MANAGING YOUR HEALTH
19
3
YOUR
HEALTHCARE TEAM
Community support workers
Community agencies such as AIDS service organizations can also be a valuable
part of your support and care team. Most AIDS service organizations provide a
range of support services for people with HIV, ranging from information and
counselling to practical supports like food banks. Check with your local AIDS
service organization(s) to see what services may be available. Many other support
services may be available in your area as well; AIDS service organization staff
can often help you find services you might not know about.
Your local AIDS
service organization is
a good place to start
when putting together
your healthcare team.
Putting together your
healthcare team
Your local AIDS service organization is a good place to start when putting
together your healthcare team. The staff and volunteers there can help you
locate a doctor with experience treating people with HIV. They can tell you
about other services for people with HIV that you may need and they can help
you to meet other people with HIV through support groups and social events.
They can also provide you with advice, support and tips on how to live well
with HIV.
To get in touch with an AIDS service organization close to you, you can
contact CATIE’s free HIV information phone line at 1-800-263-1638 or go to
our website, www.catie.ca.
As a person living with HIV, you will probably see many healthcare providers
for different reasons at various points in time. You can play an important role
to ensure that there is good communication among all the members of your
healthcare team by sharing information. Keep your personal health record
(see page 317) up to date and take it to all your appointments to help you in
this co-ordinating role.
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How to get on famously with your doctor
Your doctor’s appointment lasts about 15 minutes. That’s not a long
time! Here are eight great tips for making the most of those 900 precious
seconds. Use the personal health record on page 317 to help you get
3
YOUR
HEALTHCARE TEAM
yourself organized.
• Jot down symptoms and side effects, including any changes in
your bowel movements. These are clues for better diagnosis
and treatment.
• Make a note of anything going on in your life that’s affecting
your health.
• Have all official information and cards ready: your insurance or
health card and your pharmacy’s name and number.
• Keep a list of all the drugs you’re taking (including over-the-counter
ones) and all the anti-HIV drugs you’ve ever taken. Also keep track
of which doses of your anti-HIV drugs you’ve missed. Adherence
difficulties are nothing to feel guilty about, so let your doctor know.
• Tell your doctor about any alternative or complementary treatments
(herbs, vitamins, supplements) you’re on. You may want to be prepared
As a person living with
for some scepticism, but this isn’t about his or her endorsement.
HIV, you will probably
It’s an update. And it’s important in order to check for any possible
interactions between your medications and supplements.
• Keep a to-do list to check with your doctor: What prescriptions are
you running low on? What lab tests do you need? What appointments
see many healthcare
providers for
different reasons.
do you have coming up? Do you need referrals (acupuncturist,
therapist, herbalist, etc.)?
• Bring clippings about possible new drugs or treatment strategies
to discuss.
• Bring something to read. They’re always running late.
Adapted from POZ magazine: Special Edition, Fall 2000.
MANAGING YOUR HEALTH
21
3
Building a healthy relationship
with your doctor
YOUR
A relationship with your doctor is like any relationship: it has its ups and downs
HEALTHCARE TEAM
and effort is required to make it work. This section discusses what you can do
to build healthy and productive relationships, not just with your doctor but with
all your healthcare providers.
You need to find a doctor who can help you manage your HIV disease—
someone you can work with over a long period of time. Some of the things that
A relationship with
your doctor is like any
relationship: it has its
ups and downs and
effort is required to
make it work.
experienced people living with HIV say they value in their doctors include:
• someone who is knowledgeable about HIV through training and experience, who has other HIV-positive patients in his or her practice, and who
keeps up with new developments;
• a doctor who is respectful and caring and who is as interested in you as
a person as he or she is in your lab results;
• someone who will be accepting of your lifestyle, with whom you can be
open and honest.
Your doctor should run an efficient office. You should be able to schedule
an appointment within a reasonable amount of time, not have to wait too long
in the waiting room, have long enough appointment times to adequately deal
with all your concerns, and feel that your privacy is respected.
These are things that you can reasonably expect from a doctor. But what
should your doctor be able to expect from you, the patient? Some of the things
that experienced HIV doctors say they value in their patients include:
• keeping your appointments and being on time for them. If you need to
cancel, do so with sufficient notice;
• preparing a list of your questions and things you need done in advance
of your appointment;
• being open and honest around issues relating to your lifestyle, substance
use, drug adherence, alternative treatments and anything else relevant
to your health. You may risk a judgmental response, but hopefully over
time you and your doctor will develop a level of mutual respect. It is better
for the management of your HIV if your doctor has all the information.
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HIV Patient’s Bill of Rights
• You have the right to be treated with dignity and respect.
• You have the right to hope.
• You have the right to ask questions.
3
YOUR
HEALTHCARE TEAM
• You have the right to honesty.
• You have the right to a second opinion.
• You have the right to confidentiality.
• You have the right to up-to-date and balanced information.
• You have the right to refuse any therapy.
• You have the right to have all tests and treatments done with your full
If you have questions
that require a lot of
time to answer, try
informed consent.
• You have the right to your doctor’s full attention.
• You have the right to get important information in person.
calling the telephone
educators at CATIE or
talking with a counsellor
To work well with your doctor, try to keep up to date about HIV and related
issues. Resources from CATIE and other AIDS service organizations can
at your local AIDS
service organization.
provide the information you need to become an informed patient and an active
partner in your health care. You can take advantage of the Internet, fact sheets,
articles, newsletters and books like Managing your health, and there are often
lectures and workshops on HIV issues you can attend. While your doctor can
be a good resource for some of this information, often he or she is working
under time constraints. So, if you have questions that require time to answer,
try calling the telephone educators at CATIE or talking with a counsellor at your
local AIDS service organization. This type of homework can help to make your
time with your doctor more productive. But take your time, proceed at a pace
that is comfortable for you and don’t overload yourself with information.
If your doctor is not meeting your needs, there is certainly nothing wrong
with “firing” your doctor and finding a new one. Most doctors have a thick
enough skin that they won’t be offended if you transfer your care to someone
else. Of course, this is a luxury only people living with HIV in larger cities can
MANAGING YOUR HEALTH
23
3
afford. In many places, it is hard to find a doctor taking new patients, let alone
someone who is knowledgeable about HIV and has the right personal qualities.
Even if you’ve found the right doctor who meets your needs and you are
YOUR
working well together, as with any relationship, there will inevitably be the occa-
HEALTHCARE TEAM
sional disagreement or disappointment. If you and your doctor do not see eye
to eye on some issues, it is not the end of the world. What’s important is that
you continue a dialogue over a number of visits and sometimes agree to disagree.
Even in the face of conflict, try to communicate in a spirit of mutual respect.
All doctors are regulated by professional colleges or territorial medical
regulatory authorities in the province or territory in which they practice. In the
rare event that your doctor’s conduct is unprofessional, you can make a complaint through the appropriate college or territorial medical regulatory authority.
The same situation holds for other healthcare professionals, all of whom have
national or provincial regulating bodies.
Like any relationship, although it takes effort to make it work, it is worth it in
the end.
Resources
The Positive Side
Health and wellness magazine containing articles about working with
different healthcare providers, such as:
• Patients are from Venus, doctors are from Mars
• Top nine reasons to call your doctor right away
• The pharmacist list
Look under Health Care Access in the e-zine index (www.positiveside.ca)
These and many other relevant resources can be accessed on CATIE’s website
(www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by
calling CATIE at 1-800-263-1638.
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YOUR
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MANAGING YOUR HEALTH
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4
Healthy living
Sometimes living with HIV can make you feel like things
are out of your control. But there are many things you
can do to feel healthier and better about living with HIV.
One of the best ways to cope with it—other than taking
anti-HIV drugs—is to work toward achieving a healthy,
happy and relaxed you. Like the old saying goes: “Living
well is the best revenge!” This chapter focuses on
proactive strategies, options and ideas to help you get
and stay healthy, reduce harm and take control of your
personal well-being. Finding the right balance for your
body and lifestyle can make living well with HIV a reality.
About the author
Alex McClelland has been involved in many Canadian
CONTENTS
• Eating well
• Getting the vitamins and
minerals your body needs
• Exercise
• Coping with stress
• Tattoos and piercings
• Harm reduction as a tool
to healthy living
and international civil society organizations and NGOs
working toward and advocating for the support, care
and rights of people living with HIV. Alex has been living
with HIV since he was 19 years old and for five years he coordinated
Positive Youth Outreach, a peer support program for young people living
with HIV in Toronto. Alex has since continued to work toward the HIV
response with such organisations as the AIDS 2006 XVI International
AIDS Conference, the Canadian AIDS Society, UNAIDS, the World AIDS
Campaign and the Global Network of People Living with HIV/AIDS.
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HEALTHY LIVING
Eating well
Eating a balanced diet based on fresh and unprocessed foods is essential for
health and will help your body cope with HIV infection.
So what does eating well actually mean? To help you understand how to
make healthy food choices, Canada’s Food Guide recommends that you eat
the following servings daily from each food group:
• at least seven servings of vegetables and fruits
• six to eight servings of grain products
Eating a balanced diet
• two to three servings of milk products and alternatives
• two to three servings of meat products and alternatives
based on fresh and
At first, this may seem like a lot of food! However, you only need one piece of
unprocessed foods is
bread or half a cup of cooked rice to make up one serving of grain products.
essential for health and
Similarly, half a cup of fresh, frozen or canned vegetables or half a cup of fruit
will help your body cope
with HIV infection.
juice is all you need to make up one serving of vegetables or fruits. One serving
of meats or alternatives can mean two eggs, two tablespoons of peanut or nut
butters or just half a cup of cooked meat or fish.
A word of caution: Canada’s Food Guide points the way to good nutrition
for all Canadians, but it may not take adequately into account particular foods
that you are accustomed to eating, especially if you are from an ethnocultural
community. And it doesn’t take into account special dietary considerations
that you may have as a person living with HIV. This may be particularly true if you
are on anti-HIV drugs or dealing with other medical conditions or complications.
Maintaining a healthy
weight can be a
challenge. Some people
Talk to your doctor, nutritionist, naturopath, dietician, nurse or other healthcare
provider if you have questions or concerns related to food and nutrition.
Maintaining a healthy weight
with HIV find it hard to
Maintaining a healthy weight can be a challenge. Some people with HIV find
keep enough weight on.
it hard to keep enough weight on. Others tend to gain weight—often in the
Others tend to gain
weight—often in the
unhealthy form of fat.
unhealthy form of fat. Fat redistribution as a side effect of some anti-HIV drugs
makes this issue even more complicated.
You deserve to look and feel your best, but you also need to make sure
you are getting all the nutrition you need. Look for healthy ways to lose or gain
weight. Any weight-loss diet that places too much emphasis on a small range
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of foods, or deprives you of vital nutrients is a no-no! Likewise, if you are trying
to gain weight you should include a wide range of foods in your diet, and avoid
saturated and trans fats. In most cases, attention to your diet should be combined
with an exercise routine. Discuss any weight loss or weight gain plans with your
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HEALTHY LIVING
doctor, dietician, nutritionist, naturopath, nurse or other healthcare provider.
Carbohydrates, fats and proteins
Carbohydrates, fats and proteins are the building blocks of a nutritious diet.
They are also needed to give your body the energy it needs to carry out daily
tasks. Calories are the common measure of the energy in various foods.
Learning more about the number of calories in different foods will help you
understand how much food energy your body needs each day depending on
your age, weight, gender and other factors.
Carbohydrates or carbs are a primary source of healthy food energy and
should be eaten with every meal. There are two kinds of carbohydrates: simple
carbs and complex carbs.
Complex carbs include whole grains, beans and peas, vegetables and
fruits. These foods are considered healthy because they take some time for
your body to process, raising your blood sugar (or glucose) levels gradually and
giving you a steady source of energy. Complex carbs also tend to be great
sources of fibre, vitamins and minerals.
Simple carbs include sugars, fruit juices and white starchy foods such as
white rice and white bread. Found in most processed foods, simple carbs raise
your blood sugar rapidly and give you instant energy. This rapid rise is followed
by a dramatic drop in blood sugar that can leave you feeling drained. Unlike
complex carbs, simple carbs are usually not a good source of nutrients, vitamins,
minerals or fibre.
Carbohydrates or carbs
are a primary source of
healthy food energy and
should be eaten with
every meal.
As much as possible, you should try to eat complex carbs and limit your
intake of simple carbs. Some easy ways to include complex carbs in your diet
include replacing white rice with brown rice, white bread with whole wheat and
using grain or spinach pastas.
We have all heard bad things about fats over the years. But in fact, fats are
a vital part of your diet because they provide the most concentrated form of
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energy that is available from food. There are different kinds of fats, some that
are healthy and some that are not, especially for some people with HIV. Make
sure your diet contains the healthy type of fats.
Unsaturated fats, monounsaturated fatty acids and omega-3 fatty acids
are all good for heart health. These types of fats come mainly from plant
sources. They can be found in olive oil, canola oil, flax oil, nuts and avocados.
Salmon is also an excellent source of omega-3 fatty acids.
Saturated and trans fats are not good for the health of your heart because
they can clog your veins and arteries and raise your risk of heart disease.
Make sure your diet
Avoiding saturated and trans fats is particularly important for people with HIV
contains the healthy
who are taking anti-HIV drugs, which may increase their levels of cholesterol.
type of fats.
Unsaturated fats,
Saturated fats are found mainly in animal fats and dairy fats and should
only be eaten in very small amounts. Trans fats are found in processed fast
foods and snack foods. They are also known as partially hydrogenated oils.
monounsaturated fatty
Most baking shortenings and shortenings used for deep fat frying in restaurants
acids and omega-3 fatty
are major sources of trans fats. Since significant health risks have been associ-
acids are all good for
heart health.
ated with trans fats, it is recommended that you avoid them completely.
Food labels contain important information about what is contained in the
foods we eat. Read the fine print on cans, bags and bottles in order to know
more about what you are eating. This information will help you to avoid or
reduce the amount of saturated fats, trans fats, simple carbohydrates and
other things that are not healthy in your diet.
When you have HIV, you tend to need a lot of protein in your diet. Protein
helps your body to produce hormones, enzymes, cell structures and parts of
the immune system. Protein also helps build and maintain lean muscle mass.
Proteins are found in all meats, fish and shellfish, eggs, legumes (beans and
When you have HIV,
you tend to need a lot of
protein in your diet.
peas), peanut and nut butters, nuts and seeds, milk products, including cheese
and yoghurt, and soy products such as tofu and soy milk.
It is important to note that certain medical conditions, such as kidney disease,
can be made worse if you eat too much protein, so be sure to talk with your
doctor or nutritionist about his or her recommendations for the amount of
protein you should be eating.
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Food safety
HIV disease makes your body more susceptible to disease-causing
bacteria found in food or water. In the years before effective anti-HIV
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drugs, many people living with HIV experienced life-threatening illnesses
caused by contaminated food and water. Though serious illnesses are
less of a problem if you are taking anti-HIV drugs, it is still very important
to observe safe food preparation rules:
• make sure that your hands and the surfaces that you are
preparing the food on are clean;
HIV disease makes your
• ensure that meat and seafood are thoroughly cooked;
body more susceptible to
• carefully peel or wash fruits and vegetables;
disease-causing bacteria
• avoid foods that are past their “best before” dates or are spoiled;
found in food or water.
• keep raw meat, poultry and seafood separate from ready-to-eat
foods, such as fruits or salads, and keep raw meat, poultry and
seafood separate from cooked foods. This includes paying attention
that you don’t reuse your cutting board for ready-to-eat foods after it
has been used for raw meat or seafood;
• don’t let food sit out at room temperature for long if it is prone to
spoiling. Keep hot things hot and cold things cold;
• pay attention to warnings about food contamination.
You have better control over these things if you are preparing your
meals at home. When you are dining out, it may be better to avoid raw
or undercooked foods, especially fish, poultry and meats.
Some anti-HIV drugs
are meant to be
taken without food.
Food and anti-HIV drugs
Some foods interact with anti-HIV drugs. This means certain foods can change
the way that your body absorbs the drugs that you are taking. This can result in
your having either too much drug in your bloodstream, which could lead to side
effects, or too little, which could lead to the development of drug resistance
(see Chapter 10, Treatments). Make sure to ask your doctor or pharmacist about
any special food considerations for each anti-HIV drug you are prescribed. Also,
MANAGING YOUR HEALTH
It’s important to know
about these special food
instructions so your
anti-HIV drugs work as
well as they can.
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ask whether or not you are supposed to take your drugs with food. In some
cases, eating at the same time that you take your drugs could cut down on
certain side effects, such as upset stomach. But some anti-HIV drugs are
meant to be taken without food. It’s important to know about special food
instructions so your anti-HIV drugs work as well as they can.
Getting the vitamins and minerals
your body needs
A healthy diet should provide all the vitamins and minerals your body needs.
However, due to digestive problems, many people living with HIV have a difficult
time absorbing nutrients from their food. This means that your body may lack
Many people living
with HIV have a difficult
time absorbing nutrients
from their food. This
means your body may
certain vitamins and minerals that help it to function well.
Vitamin and mineral supplements
HIV disease and some of the side effects of anti-HIV drugs can make it hard to
absorb vitamins and minerals from your food so taking a daily multivitamin is
highly recommended.
Your doctor, nutritionist or naturopath can determine if your diet is not pro-
lack certain vitamins and
viding you with adequate vitamins and minerals. If this is the case, supplementing
minerals that help it
your diet with vitamins and minerals is a good idea. Talk to your doctor, nutritionist,
function well. Taking a
daily multivitamin is
highly recommended.
naturopath, nurse, dietician or other healthcare provider about the value of
supplements in HIV. Be sure to choose supplements that match your body’s
needs and that don’t interact with your other drugs.
Vitamin and mineral supplements can be costly because, for the most part,
they are not covered by health plans. Some AIDS service organizations provide
limited funds so that people with HIV can buy supplements, or they may have
bottles of supplements available for their clients. In larger cities, some health
food or supplement stores offer a discount to people with HIV.
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Eat your veggies! Chicken soup
This soup is a great way to use up leftovers.
Bring some chicken broth (you can buy this in cartons, cans or
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cubes, or you can make your own) to a boil in a large pot. Add a wide
variety of colourful vegetables, fresh and frozen: corn, green or yellow
beans, peas, cabbage, broccoli, onions, spinach, kale, Swiss chard,
bok choi, carrots, potatoes… the list is almost endless. If they don’t
give you problems with gas, pre-cooked or canned beans such as
lentils, kidney beans or chick peas can be added to increase the protein
Some AIDS service
in this soup. You can also add some leftover chicken pieces and a few
organizations provide
spoonfuls of olive oil to really boost the taste and the nutritional value.
limited funds so that
Salt, pepper and other herbs like parsley, cilantro, oregano or basil can
people with HIV can
be added to taste. From start to finish, this soup shouldn’t take more
purchase supplements,
than 15 minutes to make.
If you are vegetarian, you can modify this recipe by starting with a
vegetable broth and omitting the chicken. You could add cheese or tofu to
boost the protein content and some sesame oil to give it a hearty flavour.
Croutons, parmesan cheese, nuts or whole grain crackers can top
or they may have bottles
of supplements available
for their clients.
off this nutritious soup.
Make a big pot and freeze some of it for a day when you feel too
tired to cook but want to feed your body and soul!
Adapted from Lark Land’s KISS Chicken Veggie Soup, The Positive
Side, Spring/Summer 2004.
Antioxidants
Made naturally by the body, antioxidants are also found in some foods and
supplements. Antioxidants are important because they neutralize molecules
called free radicals inside your body. Free radicals start a process called oxidation which damages healthy cells in the body. HIV can intensify this process of
cell damage. Antioxidants protect against cell damage.
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Foods that are rich in antioxidants include blueberries, red peppers and
spinach, as well as black and green tea, red wine and dark chocolate. You can
also find antioxidants in supplements including vitamin C and E supplements,
co-enzyme Q10, selenium, zinc, alpha-lipoic acid and N-acetyl cysteine (NAC).
B vitamins
B vitamins are great for increasing your energy. B vitamins are found in potatoes, bananas, lentils, liver, turkey and tuna, among other things. If your diet is
not providing you with enough B vitamins, you might consider supplementing
Many of us in Canada
experience harsh winters
where we do not get
as much sun as we
would like or as much
with vitamin B1, B2 and B3.
Low levels of vitamin B12 are associated with anemia, low energy and the
inability to think clearly. Your doctor can check your levels and, if they are low,
you can get a B12 injection from your doctor, which provides B12 in a way that
your body can use that is better than oral or liquid B12 formulations.
Vitamin C
as our body needs to
Vitamin C is one of the best antioxidants available. If you feel that you are not
make vitamin D.
getting enough vitamin C in your diet through fruits and vegetables, such as
citrus fruit, broccoli, parsley and red peppers, you may consider supplementing
with vitamin C. In high doses, vitamin C can cause diarrhea.
Vitamin D
Vitamin D helps our bodies to use calcium properly and has many other
functions as well. Our skin makes its own vitamin D when exposed to the sun.
However, many of us in Canada experience harsh winters, where we do not
get as much sun as we would like or as much as our body needs to make
vitamin D. Since it is difficult to get vitamin D from food, many common foods
such as milk, bread and margarine have vitamin D added to them.
Vitamin E
Vitamin E is another great antioxidant. It is found in such foods as avocados,
nuts and seeds, leafy green vegetables and vegetable oils such as canola, corn
or sunflower. High doses of vitamin E may increase your risk of heart disease,
so don’t overdo it if you are supplementing with vitamin E.
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Calcium
Calcium is essential for healthy bones. It is found in dairy products such as
milk, cheese or yoghurt. Certain anti-HIV drugs can affect your bone health,
leading to thinning bones. People who are older, especially menopausal
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women and people with thinning bones, should especially ensure that they
have sufficient calcium intake. If you are concerned that you are not getting
adequate calcium from your diet, consider calcium supplements. Some people
find calcium supplements can be constipating. A small amount of magnesium
can ease this effect.
A diet low in iron,
Iron
which is often the case
Iron plays an important role in supporting your immune system. A diet low in
with the typical North
iron, which is often the case with the typical North American diet, can make
you prone to infection. It is important for people with HIV to ensure they are
American diet, can make
getting enough iron, which is found in meats, dried peas and beans, some
you prone to infection.
cereals and some fruits and vegetables. You should only take an iron supplement
if it is prescribed by your doctor or nutritionist.
Selenium
Selenium is an essential micronutrient and plays a role in how the thyroid gland
works. It is found in foods such as nuts (especially Brazil nuts), cereal, meat,
fish and eggs.
Zinc
Zinc is important for the health of your immune system. Foods that contain
zinc include most meats, poultry and shellfish. If you are a vegetarian, a great
source of zinc is pumpkin seeds, as well as milk and cheese, beans and
brown rice.
Other supplements for people with HIV
Other supplements which may benefit people living with HIV include:
• alpha-lipoic acid;
• carnitine;
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• N-acetyl cysteine (NAC);
• L-glutamine;
• probiotics;
• coenzyme Q10.
To get more information on these supplements and the role they play in your
health, check out CATIE’s A Practical Guide to Nutrition for People Living
with HIV.
Rainbow Fruit Smoothie
Put a sliced, ripe banana in the blender. Since colour is where the
nutrients are, add a whole rainbow of fresh or frozen fruits to your
blender till it is about three-quarters full. Add orange juice—fresh
squeezed, if possible—to the level of the fruit. Blend the mixture till it
Not only is a strong body
better equipped to fight
is smooth, then add a couple of spoonfuls of plain yoghurt and blend
a little longer. This is a delicious way to start your day!
There are lots of variations to this basic recipe. You can add cranberry
HIV, but achieving a level
juice concentrate, frozen mango purée, pomegranate juice or some
of physical fitness can
grated ginger. Ginger and pomegranate boost the anti-oxidant, anti-
help you fight stress.
inflammatory and cancer-protecting nutrients in the smoothie. If you
need extra calories in your diet, add coconut milk in place of some of
the juices. If you need extra protein, add a little protein powder.
Experiment and make this basic smoothie your own.
Adapted from Lark Land’s KISS Fruit Shake, The Positive Side,
Spring/Summer 2004.
Exercise
Many people living with HIV find that exercise helps their overall health and wellbeing. Not only is a strong body better equipped to fight HIV, but achieving a
level of physical fitness can help you fight stress. Physical fitness is also important
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because it reduces your risk of depression, and people living with HIV have
high rates of depression. Last but not least, exercise will help you maintain your
ideal body weight in the form of muscle rather than fat. Running, walking fast,
biking, skating, swimming and other similar aerobic activities all promote a
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healthy body. Be careful though! You don’t want to overdo an exercise plan,
especially when you are just starting out. Check with your doctor before you
start in a workout program and consider meeting with a personal trainer who
can demonstrate how to get the most from your workout. Exercise can also be
a part of a rehabilitation program. For more information about exercise in the
context of rehabilitation (see Chapter 14, HIV and rehabilitation).
On the move
Exercise can lead to:
• more energy;
• less stress;
• an improved mental outlook;
• improved heart capacity and lung function;
• sound sleep;
To put on weight that
• more regular bowel function;
will stay on, you need to
• enhanced self-image and self-esteem.
lift weights and increase
the amount of protein
Building lean muscle
Gaining weight and building lean muscle mass can be especially important if
and complex (healthy)
carbs in your diet.
you have experienced rapid weight loss with HIV disease. To put on weight that
will stay on, you need to lift weights and increase the amount of protein and
complex (healthy) carbs in your diet. Eating high-fat foods is not the answer!
For weight training, use machines at a gym, free weights or do push-ups, sit-ups,
and squats, which use your own body weight to build muscle.
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Training tips
When working out, don’t forget to:
• breathe;
• wear comfortable clothing;
• drink lots of water before, during and after you exercise;
• include a warm-up and cool-down period as a component of
your workout;
• listen to your body;
• eat a nutritious, well-balanced diet with adequate calories and protein
to fuel your body;
• give yourself a break, such as days off between workouts, to let your
body recover.
Make time in your
life for the things you
love to do.
Coping with stress
Finding time for yourself is an effective stress buster, so make time in your life
for the things you love to do. Go dancing, cook a healthy meal, bake bread,
go for a walk in the park or woods, go swimming, listen to music, or do some
gardening. And of course, spend time with the people you love. There are other
ways to deal with stress:
• Learn more about meditation and relaxation breathing techniques
Take a course or buy or download meditation guides. Most naturopaths
will have more information for you.
• Start taking yoga or Tai Chi Check for free or pay-what-you-can yoga
classes at yoga studios, community centres or AIDS service organizations.
• Get a massage If you work, the cost of massage may be partially or
completely covered through your insurance plan. Massage may also be
available free at your local AIDS service organization. Some massage
schools offer free or pay-what-you-can massages from their students.
• Take breaks This includes small breaks such as having a nap or taking
a sick day from work or school, as well as longer breaks such going out
of town for a vacation.
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Tips to help you de-stress
• Drink lots of water Our bodies are made up of 75 per cent to 90
per cent water, and water flushes out toxins from the body and keeps
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us hydrated. Try to drink at least eight glasses of water a day.
• Eat fresh fruits and greens, whole grains and soy products
Try juicing fruits and vegetables, which is a great way to get lots of
nutrition from fresh foods. Think of how good your body feels when
you feed it a fresh, colourful salad and compare that to how you feel
when you eat over-processed and overcooked food. Avoid the centre
aisles in your grocery store as much as possible because this is where
most processed foods are located.
• Slow down, savour the moment Be mindful and present. Rest and
relax. Get a massage to boost your body’s circulation and immune system.
• Trust yourself Listen to your inner voice. Keep a journal. Dare to
fulfill a dream. Put out a wish or prayer and don’t be surprised if you
get what you ask for. Remember to give thanks.
• Rejoice Celebrate by doing one of your favourite activities or discovering a new one. Learn how to knit. Join a choir. Try salsa dancing or
African drumming.
• Exercise Get your heart pumping and blood circulating. And don’t
forget to breathe! Walk, swim, dance, cycle… pick your favourite. Not
only will it benefit you physically, it will also lift your spirits. Sex counts
as exercise!
• Speak sweetly to yourself Your words to yourself can either heal
or harm you. Speak and think positive thoughts. Respect yourself
and your contribution. Each of us is unique and holds different gifts
and perspectives.
• Seek out help Use your local AIDS service organization. They may
have resources or programs that make your life easier. Opportunities
may exist that you are unaware of. Connect with others. If you live in a
remote area, reach out by e-mail, on the Web or use toll-free numbers.
Communicating with other people with similar issues is an invaluable
resource of support and information. Accept support from family and
friends. Celebrate your relationships.
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Tattoos and piercings
People with HIV can get tattoos and piercings. But if you are considering getting
a tattoo or piercing, be aware that if the instruments used are not sterilized or
disinfected, the risk of hepatitis B or C transmission to you does exist. As well,
reused or unsterilized equipment can transmit HIV. Single-use, disposable needles
and ink cups should be used. Any reusable instruments or devices that penetrate the skin and/or come in contact with blood should be thoroughly cleaned
and sterilized between uses. Look for a clean, hygienic shop, with staff who
can speak knowledgeably about what procedures they use to prevent the
transmission of blood-borne infections.
In prisons, tattoos are a part of the subculture, where prisoners who are
tattoo artists create their equipment from available materials. Because this
equipment is reused and not sterile, it can easily transmit blood-borne infections
from one person to another. Prisoners and their advocates are attempting to
promote safe tattooing projects within prisons to protect both prisoners' and
public health.
Harm reduction as a tool
to healthy living
You may find it strange that information about drug use and harm reduction is
in a chapter about healthy living. But people with HIV may be at very different
places with regards to healthy living practices and decisions. Some of us are
risk-takers and party people, while others prefer calm pursuits that keep us
close to home. Some of us are people who have always prioritized our health
and cared for our bodies, while some of us have learned how to do this in a
way that suits our character and temperament over time. Any commitment to
healthy living with HIV, no matter how big or small, begins with where we are at
now in our lives.
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Drugs, drug use and harm reduction
The terms drug and drug use have specific meanings in this section of the
book. They do not refer to the drugs used to treat HIV as in the rest of
Managing your health. Instead they refer here to a wide range of substances
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and activities, from the occasional use of drugs for pleasure or fun through to
dependence and addiction. When we refer to drugs in this section we are
including substances that are often referred to as party drugs, street drugs or
recreational drugs.
The term harm reduction refers to an approach to drug use that provides
options or choices to help you live as healthily as possible, even if you are using
drugs. Drug use can put you at risk for many health problems. But you can
take steps to reduce those risks.
Drugs can include stimulants or “uppers,” like cocaine and methamphetamines, depressants or “downers,” like methadone or oxycontin, and hallucinogens, like LSD. Drugs can be smoked, as in the case of cigarettes, marijuana
or crack. They can be swallowed, as with ecstasy or oxycontin. They can be
drunk, as in the case of alcohol or methadone. They can also be snorted as
with cocaine or injected as in the case of heroin.
Reasons for using drugs
People have different reasons for using (or not using) drugs. Some people use
drugs recreationally, which means that they take drugs or alcohol in social situations or on special occasions for fun. Some experience problems associated
with drug use, such as loss of inhibition, hangovers, blackouts with memory
loss and overdoses. Some people become addicted to drugs.
Drugs can be used as a coping mechanism. Some people use drugs to
help deal with problems such as emotional pain, anxiety, stress or low selfesteem. Drugs may help to cover up these problems, but they interfere with
figuring out ways to deal with the underlying issues. In these cases, drug use
can become a problem.
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Maintaining a balance
Many people are able to keep a balance between their drug use and the other
things in their lives. However, this balance can be hard to maintain. In some
cases, getting and using drugs becomes a main focus of our lives. In these
cases, drugs become more important than our friendships and our interests,
and we may find ourselves doing things we don’t really like doing in order to
get drugs: spending too much money on them, missing work, borrowing
money and not paying it back, exchanging sex for drugs. This is a sign that
drug use has changed to dependence or addiction.
Drug dependence is very complex and can involve physical, psychological
and emotional changes, where you don’t have control over the drugs you’re
taking—they have control over you. If you think that you’re having problems
like this, there are ways to take back control: cutting back, taking a break,
switching the amount or type of drug you’re taking or trying addiction treatment.
You can get help to explore your options—talk to a doctor or healthcare
provider that you trust.
One way that drugs can
affect us is by lowering
our inhibitions.
Loss of inhibition
Inhibitions are the little warning bells in our heads that go off telling us we’re
about to do something dangerous or risky. One way that drugs can affect us is
by lowering our inhibitions. For example, cocaine can lower your inhibitions by
making you feel confident and almost invincible, so you don’t have to listen to
the warning bells. Alcohol can suppress the part of our brain that holds the
warning bells and make it easier to take risks. Crystal meth can increase your
sex drive to the point where nothing seems more important than having sex.
Lowered inhibitions make it more likely that you will have unsafe sex, including
having sex without using a condom, or with people or in places you normally
wouldn’t. As a person with HIV, this not only puts you at greater risk of passing
on HIV to other people, but can also put you at risk for becoming infected with
a sexually transmitted infection or a strain of HIV that’s already resistant to
some anti-HIV drugs.
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Stimulants, depressants and hallucinogens
There are generally three types of drugs—stimulants, depressants and
hallucinogens—and they are classified based on the general effects
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HEALTHY LIVING
they have on the body.
Stimulants
Stimulant drugs speed up the body and body processes and are
sometimes called “uppers.” They can increase heart rate, breathing rate,
energy, sex drive, confidence and sometimes aggression. Stimulants
include caffeine (in coffee), guarana and taurine (in energy drinks), nicotine
(in cigarettes), cocaine (coke and crack) and methamphetamines
(speed, crystal meth and ecstasy).
Depressants
Depressant drugs cause body processes to slow down and some are
painkillers. Depressant effects include slower heart rate, slower breathing
rate, reduced pain, feeling calm or relaxed and sometimes even unconsciousness. They are called “downers” or “downs” and this category of
drugs includes alcohol, opiates (heroin, methadone and oxycontin),
GHB (G) and ketamine (K).
Hallucinogens
As the name suggests, these types of drugs can cause hallucinations
and change the way we perceive the world, with effects ranging from
mild to severe. Some of these common effects include paranoia, hearing
voices, seeing things or making us think we can do impossible or
dangerous things without getting hurt. Examples of hallucinogens
include magic mushrooms and LSD.
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HEALTHY LIVING
Interactions between anti-HIV drugs
and recreational drugs
Recreational drugs have unpredictable interactions when combined. This
increases the possibility of overdose or of an effect that you did not plan for,
such as getting too high when you mix alcohol with hallucinogens or getting an
erection that lasts for too long when mixing crystal meth with erectile dysfunction
drugs. The interactions between anti-HIV drugs and various recreational drugs
are also not well defined. Anti-HIV drugs often increase the activity of recreational
drugs in the body—this means that you need less of the recreational drug to
get the same effect when you’re also taking anti-HIV drugs along with it. In
some cases, as with methadone and ddI (Videx) or d4T (Zerit), an interaction
can occur that makes your anti-HIV drugs less effective, leading to the
possibility of drug resistance. You may experience symptoms of withdrawal
if you mix nevirapine (Viramune), efavirenz (Sustiva, and also found in the
combination pill Atripla), abacavir (Ziagen, and also found in the combination
pill Trizivir) or darunavir (Prezista) with methadone. It is best to talk openly and
honestly with your doctor about possible interactions between your anti-HIV
drugs and the substances that you take.
Alcohol
Having a few drinks once in a while is one way that many of us relieve stress
and socialize. But excessive alcohol consumption can be dangerous. It can
deplete important vitamins and minerals from your body. It can also be very
hard on your liver. Too much alcohol can lead you to make errors in judgment,
and since sex and alcohol often go together, alcohol can lead you to make
choices you may regret, like not having safer sex and not telling your sex
partners about your HIV status. Alcohol is also a well-known depressant and
depression is an issue with which many people with HIV struggle. Proceed with
caution when it comes to alcohol and if you feel that alcohol is affecting your
decision making and your quality of life, speak to your doctor about ways that
you can regain control of your alcohol use.
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Cigarettes
Smoking tobacco has been shown to lead to heart disease and cancer and
can make breathing-related conditions, such as asthma and emphysema,
much worse. The nicotine in cigarettes is highly addictive.
4
HEALTHY LIVING
If you smoke, quitting may be one of the single best things you can do for
your health and well-being. Many strategies can be found to help cut back or
quit altogether, from government-sponsored smoking cessation programs to
nicotine substitutes (like gum or the “patch”) to prescribed medications. Talk to
your doctor, naturopath or even friends who have quit to learn more about
these options.
Smoke-free: Things to look forward to
• After a few days: Taste and smell improve
• After a few weeks: Circulation improves
• After one year: Risk of heart disease is cut by half
• After a few years: Risk of heart disease is the same as someone who
never smoked
• After 10 years: Risk of lung cancer is cut in half
Marijuana (pot)
Marijuana is the most commonly used recreational drug in Canada. It is a
controversial drug, with some people claiming it is a “gateway” drug to “harder”
substances like crack or heroin and others claiming it has health benefits.
For many years, people with chronic disease, like cancer, hepatitis C and
even HIV, have used pot to manage treatment side effects and disease symptoms. It can stimulate the appetite and promote weight gain for those of us
who are struggling to keep our weight up. It can also help with general pain
management, anxiety, stomach upset, sleep and relaxation.
Health Canada runs the Marihuana Medical Access Division to allow people
with grave or debilitating illnesses access to medical marijuana legally. There are
forms that you and your doctor fill out and, if approved, you then have the legal
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HEALTHY LIVING
right to use marijuana. Many people use buyers’ clubs or “compassion centres”
as their source of marijuana. Compassion centres sell clean, safe marijuana to
anyone with written proof of a relevant medical condition such as HIV.
THC, the ingredient in marijuana that is responsible for its medicinal effects,
is also available by prescription in a drug called Marinol (dronabinol).
Some people use pot recreationally and never suffer any negative consequences. Other people may develop depression from regular use. Smoking
pot, like smoking cigarettes, can also increase risk for cancer, so some people
choose to consume it by vapourizing or baking with it.
If your pot use is causing you to feel depressed or you are experiencing
negative consequences from pot, talk to your doctor about strategies for quitting
or reducing your pot use.
Crack, crystal meth or cocaine
Using crack, crystal meth or cocaine can put you at risk for a number of healthrelated problems. If you are living with HIV and using these drugs, there are
things you can do to maintain your health and to protect the health of those
around you. These include:
• not sharing your filters, straws, pipes, and other drug-use equipment.
Talk to workers at your local needle exchange program about safer
drug-use equipment;
• planning ahead so that you have a safe place to use, new equipment,
condoms and lube for sex, food and a place to crash;
• learning how to avoid overdosing and how to detect overdose symptoms
in others;
• if you are taking anti-HIV drugs, taking them regularly to prevent the
development of drug resistance;
• practising safer sex by using condoms for vaginal and anal sex. In addition
to protecting the health of your partners, safer sex also protects your
health by preventing STIs, re-infection with HIV and other infections;
• getting tested and, if necessary, treated for TB (tuberculosis) and hepatitis
A, B and C;
• getting vaccinated annually against the flu and getting a hepatitis A and
B vaccination.
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Basic harm reduction strategies that you can put in place for yourself
include eating regularly, drinking lots of fluids and getting enough sleep. Try to
set yourself limits on how much and how often you use and stick to these limits
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HEALTHY LIVING
as much as possible.
If you are feeling like your use of these drugs is getting out of your control
and negatively impacting your life, you might consider discussing this with your
doctor or a healthcare worker. They can provide you with information on harm
reduction strategies such as drug substitution (replacing your drug of choice
with something less harmful, such as methadone instead of heroin). If you are
having trouble taking your anti-HIV drugs as prescribed and you are missing
doses, talk to your doctor or a healthcare worker. They can help you to come
up with strategies to help you remember to take your anti-HIV drugs, or they
may be able to prescribe a combination that is easier for you to take regularly.
Injection drugs
If you are HIV-positive and inject drugs—heroin, crack, crystal, cocaine, pills or
steroids—you can take steps to stay healthy, even if you don’t want to or can’t quit.
It’s important to know that every time you inject a hit, you make a direct,
open path to your bloodstream. This makes it easy for you to get other viruses
such as hepatitis B and C, which, like HIV, are passed on through infected
blood. All the drug equipment you use—needles, syringes, rigs, spoons, cookers,
filters, water—can spread these viruses.
To avoid transmitting HIV, or getting and transmitting hepatitis B and C and
other infections, it’s important to shoot safely.
• Use a brand-new clean needle/syringe/rig every time you shoot.
• Try not to share needles, syringes or any other drug use equipment—
filters, spoons, cookers, water, ties, pipes.
• When shooting with others, make sure you have your own needles,
syringes and other equipment. Mark yours so you can tell them apart.
• Talk to the workers at your local needle exchange program about safer
injection practices and how to prevent abscesses and other infections.
• Before you shoot, clean your hands and the injection site. This will help
keep germs from getting into your bloodstream.
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HEALTHY LIVING
• Use a different injection site (rotate) each time you shoot—it helps save
veins. Go back to sites you’ve already used only after they’ve healed.
Try to avoid dangerous injection sites on your body: groin, thighs,
breasts, wrists, neck.
• After you shoot, recap the needle and put it in a sealed puncture-proof
container like a soft drink bottle so nobody can use it again. Bring it to a
needle exchange or give it to an outreach worker. If there is no needle
exchange near you, put the needle in a sealed container and throw it in
the garbage. Do not dump it where someone could find it and get hurt.
Injection drug use has a negative impact on your overall health, and as a person with HIV you need to be especially careful to keep yourself and the people
around you as healthy as possible. Some things that you can do to reduce the
harms that are associated with injection drug use include:
• when you know that you are going to be using drugs, plan ahead and
get a safe place to use, new equipment, condoms and lube for sex,
some food and a place to crash;
• talk to the workers at the needle exchange program to find out what you
can do to avoid overdosing, how you can recognize overdose symptoms
in others and what to do if someone is overdosing;
• get vaccinated annually for the flu and ask your doctor for a hepatitis A
and B vaccination;
• get tested, and (if necessary and advisable) get treated for TB
(tuberculosis) and hepatitis A, B and C.
If you are feeling that your use of injection drugs is getting out of your control
and negatively impacting your life, you might consider discussing this with your
doctor or a healthcare worker. They can provide you with information on harm
reduction strategies such as drug substitution that doesn’t have to be injected
(replacing your drug of choice with something less harmful, such as methadone
instead of heroin) or on treatment for your dependency on injection drugs.
Though it may not be your first priority, it is important to make time to deal
with your HIV infection. Many services that support injection drug users also
provide support, care and referrals related to living with HIV. You should consider:
• talking with your doctor or healthcare worker about taking anti-HIV drugs;
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• if you are taking anti-HIV drugs, try to make sure that you take them
regularly to prevent the development of drug resistance;
• if you are having problems taking your anti-HIV drugs regularly, talk to
your doctor or healthcare worker. They may be able to help you to come
4
HEALTHY LIVING
up with solutions to the challenges you are experiencing;
• practice safer sex by using condoms for vaginal and anal sex. In addition
to protecting the health of your partners, safer sex also protects your
health by preventing sexually transmitted infections, re-infection with HIV
and other infections.
To find a needle exchange program near you, where you can get new syringes
and other drug use equipment for free, call your public health department or
local AIDS service organization. Needle exchange programs also offer information
and support about harm reduction and drug use.
Resources
The Positive Side
Health and wellness magazine containing articles about health living,
such as:
• 10 commandments for living strong and well with HIV
• Let’s get physical
• Conquer the kitchen
• How to find the joy in everyday life
Look under Health and Well-Being in the e-zine index
(www.positiveside.ca)
A Practical Guide to Nutrition for People Living with HIV
Comprehensive book covering healthy eating, vitamins and supplements,
managing symptoms and side effects through nutrition and more
Canada’s Food Guide (www.healthcanada.gc.ca/foodguide)
Canadian Food Inspection Agency
This federal government agency, responsible for food safety in Canada, posts
up-to-date information on contaminated food products (www.inspection.gc.ca)
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HEALTHY LIVING
Pre*fix : Harm reduction for + users
Booklet about maintaining health and well being for people who use
injection drugs and their care providers (www.catie.ca)
Street Drugs and HIV
Article from Relay magazine on street drugs (relaymagazine.com)
Cannabis and HIV
Information sheets by the Canadian AIDS Society on the medicinal use
of marijuana (www.cdnaids.ca)
Medical Use of Marijuana
Information on Health Canada’s system for accessing medicinal marijuana
(www.hc-sc.gc.ca/dhp-mps/marihuana/index-eng.php)
Living Positive Magazine
Magazine, from the British Columbia Persons with AIDS Society, providing
informative, current information on a broad range of HIV/AIDS topics
(www.bcpwa.org)
Most of these and many other relevant resources can be accessed
on CATIE’s website (www.catie.ca), through the CATIE Ordering Centre
(www.orders.catie.ca) or by calling CATIE at 1-800-263-1638.
NOTES
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NOTES
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NOTES
HEALTHY LIVING
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Complementary
and alternative
therapies
5
Complementary and alternative medicine is a very broad term that
covers many different approaches to health and healing. It usually
CONTENTS
refers to any kind of therapy that lies outside the standard western
medical model. Many people with HIV use complementary and
alternative medicine along with western medical treatments, in
order to get the benefits of both.
This chapter will touch on many of the major systems and
strategies of complementary and alternative medicine, but it’s by no
means a comprehensive list. You can refer to the Resources section for more detailed information about complementary therapies
that you are interested in.
About the author
Devan Nambiar has been working in the HIV sector for
• What is complementary
and alternative medicine?
• Some examples of
complementary and
alternative therapies
• How to access and
pay for complementary
and alternative
therapies
15 years and is actively involved in the HIV community
regionally, nationally and internationally. He specializes in
allopathic and complementary health care and has been
• Putting it all together:
a personal perspective
actively studying and researching ethno-botanicals and indigenous medicines
for their efficacy and use with anti-HIV drugs. He is also involved in research
in ethnoracial communities
Devan was presented with the Honour Roll Award of the Ontario AIDS
Network in 2002, and in 2006 he was the recipient of the Canadian AIDS
Society Leadership Award. Devan worked at CATIE for nine years as a
treatment educator, and now works as a consultant with his own company,
Global Health Integrative Systems.
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5
What is complementary
and alternative medicine?
COMPLEMENTARY
Complementary and alternative medicine (often called CAM) is a very broad
AND ALTERNATIVE
term that covers many different approaches to health and healing. In Canada,
THERAPIES
complementary and alternative medicine usually refers to any therapy outside
the standard western medical model. Complementary and alternative medicine
is also known by many names, such as alternative medicine, complementary
therapies, integrative medicine or holistic medicine. These terms reflect the way
Complementary and
many people living with HIV use complementary and alternative medicines—
alternative medicine
not as an alternative that rejects the benefits of western medicine, but as
usually emphasizes the
importance of linking the
various dimensions of
an individual, including
the mental, physical,
emotional, sexual
and spiritual.
something that works with western medicine to provide them with the benefits
of both.
Complementary and alternative medicine usually emphasizes the importance of linking the various dimensions of an individual, including the mental,
physical, emotional, sexual and spiritual. Complementary and alternative medicine
attempts to heal on various levels, and explore root causes instead of just dealing with symptoms. There are many complementary and alternative therapies
that may help you improve and maintain your quality of life, repair immune
damage or treat symptoms.
Complementary and alternative medicine takes time to bring successful
results. It involves making daily effort to improve dietary intake, exercising often,
practising meditation, etc. Complementary and alternative medicine is not a
quick fix for ailing health.
A word of caution
Be wary of claims that any therapy or treatment can cure AIDS,
or reverse HIV status from positive to negative. Inform yourself by
researching the therapy and talking with other people with HIV who
have used the therapy or treatment you’re interested in.
Contact your nearest AIDS service organization, or call CATIE at
1-800-263-1638 if you have questions.
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Some examples of complementary
and alternative therapies
5
There are many different therapies and practices that are included under the
COMPLEMENTARY
term complementary and alternative medicine. Below is an alphabetical list
AND ALTERNATIVE
of some of the therapies that people with HIV may benefit from. It is by no
THERAPIES
means a complete list, but it gives a sampling of some wellness strategies and
approaches you may want to explore. Some of these strategies may become
part of your personal health plan, and the practitioners who offer them may
become members of your health team.
For more information about these and other therapies, see CATIE’s A
Practical Guide to Complementary Therapies for People Living with HIV and
A Practical Guide to Herbal Therapies for People Living with HIV.
Many people with HIV
believe that having
a positive attitude is
an important part of
Affirmations and visualization
survival and healing.
(also called guided imagery)
Many people with HIV believe that having a positive attitude is an important part
of survival and healing. An affirmation is a statement of something you want to
happen, declared in the present tense. Some examples of positive affirmations
are: “I am strong and healthy” or “I love myself.” Visualization or guided imagery
is one way of developing positive thinking that is popular with people who have
life-threatening illnesses. It involves imagining your body and your life as healthy
and well. Usually, a group leader guides the process of the visualization with
spoken instructions. Alternatively, you can use audiotapes or CDs that lead you
through the visualization process.
Aromatherapy
Aromatherapy is a branch of herbal medicine that uses the medicinal properties
found in the oils of various plants. The oils are extracted from the flowers, leaves,
branches or roots. The oils can be breathed in directly, added to bathwater, or
warmed to produce an aroma. Aromatherapy can enhance a guided visualization
or a massage.
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Ayurvedic medicine
Ayurvedic medicine is a medical system that comes from India and is more
than 5,000 years old. It is the oldest recorded medical system. In Sanskrit,
COMPLEMENTARY
“ayur “means life and “veda” means knowledge or science, so Ayurveda
AND ALTERNATIVE
means the science of life. Ayurvedic medicine uses natural healing methods like
THERAPIES
nutrition, herbs, exercise, massage, yoga and meditation to bring your body to
a healthy state.
Medicinal herbs are used
Herbal medicine
The first medicines ever used were derived from plants. Medicinal herbs are
by many people in many
used by many people in many cultures around the globe. Herbal medicine is
cultures around the globe.
also known as botanical medicine.
Herbal medicines are used by herbalists, doctors of Chinese medicine,
naturopaths, homeopaths, aromatherapists and Ayurvedic doctors. If you’re
thinking about taking herbal treatments, it’s useful to consult one of these
healthcare professionals to find out which herbs are best for you and what
dosages would be effective and safe. Practitioners experienced in treating
HIV-positive people may also be able to warn you of possible interactions with
prescription drugs you are taking. It’s wise to find out about possible interactions
before starting an herbal treatment.
Some herbs sold as “immune boosters” may be harmful to people with
HIV. Some immune-boosting herbs may stimulate parts of your immune system
that are already overactive while weakening other parts. Ask a naturopath or
herbalist, or do your own reading to find out how various herbs may be helpful
for you.
Homeopathy
Homeopathy is a system of medicine that began in Europe about 200 years
ago. It is based on the principle that “like cures like.” This means that your
symptoms are treated with small doses of a medicine that would cause those
symptoms if a full dose were given.
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Massage and touch therapies
There are many types of massage and touch therapies. Some involve light
superficial touch and some massages go deep into tissue. Massage and touch
5
therapies relieve stress and give you a sense of well-being. They can relax
COMPLEMENTARY
your body and may improve the circulation of your blood and other body fluids.
AND ALTERNATIVE
Massage therapists sometimes use oils, aromatherapy and/or lotions.
THERAPIES
Specific types of massage and touch therapies often used by people
with HIV include reflexology, therapeutic touch, reiki, shiatsu, Trager, Bowen
technique, osteopathy and chiropractic.
Massage and touch
therapies relieve stress
Meditation
Meditation is an exercise of the mind in which you learn to become an observer
of your thoughts. It is a simple practice, but it takes great discipline. Meditation
can give you a sense of calm, peace, joy and efficiency in everyday life.
and give you a sense
of well-being.
Mind/body medicine
Stress and anxiety can negatively affect your immune function and health.
Mind/body medicine is based on the idea that the health of the mind affects
the health of the body. It covers a number of health practices that focus on
reducing stress, creating a sense of wellness and fostering spiritual and
emotional connectedness to one’s surroundings.
North American Aboriginal healing traditions
The Aboriginal peoples of Canada include First Nations, Inuit/Innu and Métis.
All of these peoples have different healing traditions, but share many common
ideas, beliefs and images. These include: sharing and healing circles, traditional
ceremonies, elders, traditional medicines, feasts and gatherings. Aboriginal
healing traditions attempt to balance the four parts of the person: the physical,
mental, emotional and spiritual. It is believed that illness is not necessarily a
bad thing, but is rather a sign sent by the Creator in order to help people
re-evaluate their lives.
There are two practices often used by Aboriginal people with HIV. In
smudges, four sacred herbs are burned in a cleansing and purifying ritual.
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In sweat lodges, heated stones are placed in a pit in a small, enclosed structure,
water is poured on them, and the steam cleanses and purifies the participants.
COMPLEMENTARY
Naturopathy
AND ALTERNATIVE
The word naturopathy comes from Greek and means “a natural way to relieve
THERAPIES
suffering.” Naturopathic practitioners, called naturopaths, see symptoms as
your body’s attempt to restore balance. They use a holistic approach to healing
that can include herbal medicine, nutrition, supplements, homeopathy, traditional
Chinese medicine, chiropractic (spinal manipulation), massage and counselling.
Traditional Chinese
medicine sees illness as
an imbalance in your
body’s energy flow.
Tai Chi
Tai Chi is a form of Chinese martial art involving a series of slow, rhythmic
movements. This relaxing exercise tones your muscles, improves your posture,
breathing and circulation, and increases your energy, strength and stamina.
Traditional Chinese medicine
Traditional Chinese medicine is a complete, integrated system of healing.
Traditional Chinese medicine sees illness as an imbalance in your body’s energy
flow. This energy, known as chi or qi, moves along invisible pathways in your
body called meridians. Meridians connect your body’s organ systems to each
other and to pressure points. Techniques for Traditional Chinese medicine
include acupuncture, herbs, exercises such as Tai Chi and qi gong, and nutrition
to bring the body to a healthy state.
Yoga
Yoga uses deep breathing, stretching, the holding of postures, meditation techniques and a diet of pure foods to establish a balance between body and mind
and give you better control of your muscle systems, including your digestive
system. Many people living with HIV report improved quality of life, more energy
and less fatigue with regular yoga practice.
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How to access
and pay for complementary
and alternative therapies
Most complementary and alternative therapies listed in this chapter are not
paid for by government drug coverage plans. However, some private health
5
COMPLEMENTARY
AND ALTERNATIVE
THERAPIES
insurance benefits packages, such as those you may have through your
employer, cover some of these therapies. Review your policy or speak to the
person in charge of human resources where you work. Otherwise, you will
need to pay for these therapies yourself.
Your local AIDS service
Many complementary and alternative medicines, as well as herbs, are
organization will have
available from health food or supplement stores, and sometimes from drugstores.
information about how
Other sources include Chinese herbalists and some practitioners. Options for
people in smaller communities where these products are not readily available
include specialized mail-order services and buyers’ clubs. Your local AIDS service
organization may have information about how to access complementary and
alternative medicines and therapists in your area.
Some AIDS service organizations offer a limited range of complementary
to access complementary
and alternative medicines
and therapists in
your area.
therapies free to people living with HIV. Some offer a limited fund for people
with HIV to cover a portion of their out-of-pocket expenses for complementary
and alternative therapies. Many also hold workshops on various complementary
and alternative therapies, where you can try out these techniques for free,
before spending your money on them. Also check with local complementary
and alternative therapists for sliding-scale rates, student rates or barter systems.
Putting it all together:
a personal perspective
When you look at the long list of complementary and alternative therapies that
can benefit people living with HIV, making choices can seem overwhelming. In
this section, I am going to describe how I have incorporated complementary
and alternative therapies into my life. This is my personal perspective, and the
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COMPLEMENTARY
AND ALTERNATIVE
THERAPIES
choices I have made do not need to be the ones that you make. What you
choose to do depends on your circumstances, your health issues and your
personality. But I hope that by sharing my perspective, you will be motivated to
look at what complementary and alternative medicine has to offer you.
In order to make room for complementary and alternative medicine in your
life, it’s important to create quiet time. If you have a busy life already, you may
need to prioritize your activities and possibly give some up in order to create
quiet time for yourself.
With anti-HIV drugs, your doctor can measure your viral load and CD4+
cell count to see if your drugs are working. But there are not a lot of tests in
complementary and alternative medicine to tell you which therapy is better for
you than another. The key is to learn to listen to your body and to believe that
you can tell what works best for it. It takes time to build a relationship with
your body.
Even before my HIV diagnosis, my health was a big priority in life. So things
that might otherwise seem like a chore have become part of my daily routine.
Making my health my priority has created structure in my life. There are particular
things that I do in the morning, in the afternoon and in the evening. Other
things, I do weekly or seasonally. I like the structure, personally.
A daily routine
I wake early and begin the day by chanting Sanskrit hymns. I take my morning
vitamins and micronutrients and anti-HIV drugs. I take a multivitamin, calcium
with magnesium, vitamin D3, omega-3 and vitamin B12. Five mornings a week
I go to the gym where I do resistance weights to combat bone thinning, which
I’ve been diagnosed with. I also do yoga. The “high” of a workout feels good
and it’s a bonus that I like how my body looks, too. If I miss a day at the gym,
I don’t worry too much about it.
At lunch and at dinner I take more vitamins and micronutrients. At lunch,
I take coenzyme Q10, vitamin C, zinc, selenium, N-acetyl cysteine, vitamin B
complex and vitamin B6. At dinner, I take calcium/magnesium and omega-3
plus my anti-HIV drugs. In the evening, I meditate to Tibetan chants. I’m in bed
well before midnight and I find my sleep is deep and restorative.
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If I lose focus and don’t do these core practices regularly, my body sends
me a message. I become easily annoyed and agitated. I don’t like how this
feels, so I make sure to maintain these practices.
5
COMPLEMENTARY
AND ALTERNATIVE
Eat healthy
Good nutrition is essential. We know that high levels of HIV are found in the
THERAPIES
gut, even very early on in HIV disease. This can cause nutritional deficiencies.
It doesn’t need to cost lots of money to eat well. For breakfast, I eat non-fat
organic yoghurt (I love Liberté organic yoghurt!) mixed with muesli that I make
myself. I buy nuts and seeds at bulk food stores and mix them with fresh or
dried fruit.
On the weekend, I try to do a juice. For this, you need a juicer. This will
cost you about $50 if you buy it new, but I often see them at garage sales. I
tend to juice carrots, apples and beets with a slice of ginger. This is great for
your kidneys and liver. The beets are good if you are slightly anemic and ginger
is good for digestion.
I don’t eat out much, because I enjoy the food I make for myself. I almost
always pack a lunch and take it to work. I feel it’s important to make good
choices about the food you put into your body, but this doesn’t mean you
can’t splurge every once in a while. What’s life without cheesecake or dark
chocolate? When you shop for groceries, read the labels. Ask yourself if there
is a healthier substitute.
Take time for yourself
Every few weeks I do a gastrointestinal cleanse using psyllium husks and a
quality apple cider vinegar. Yes, it tastes awful! I also use a neti pot, which you
can purchase at a health food store, to flush out my sinus passages regularly.
This is a great little tool if you smoke or have frequent colds or sinus infections.
Every Friday night, I take my ritual soak in the tub, with a lit candle and a few
drops of essential oils. Your very own spa for minimal cost! I take Ayurvedic
herbs on a seasonal basis, get a massage monthly and see my Traditional
Chinese doctor every two months.
MANAGING YOUR HEALTH
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Two practices that I am really enjoying right now are my electric massage
chair and some new Holosync meditation tapes, which claim to work with your
brain wave patterns. These tape takes me into a deep meditative state, often
COMPLEMENTARY
lulling me to sleep, but they are creating neural pathways in the brain that help
AND ALTERNATIVE
me cope with stress. Both the chair and the tapes cost a bit of money, but
THERAPIES
I feel they they are worth it. I think of them as a long-term investment in
my health.
Newly diagnosed?
I’ve been doing these kinds of health practices for many years now. For a
“newbie” to the world of HIV who wants to start a healthier lifestyle, I think that
selecting a quality multivitamin and adopting an exercise program that really
gets your heart pumping are good places to start. Of course, speak to your
doctor first before starting an exercise program.
The cost of complementary and alternative therapies is an issue, but there
are lots of very simple, inexpensive things that you can do for yourself. Look at
your budget and see what you can afford. AIDS service organizations are good
places to look for assistance when you are first starting out. Your local AIDS
service organization may have a volunteer massage therapist on site, or they
may have a fund to help you cover the costs of some of these therapies. Buy
vitamins on sale and stock up.
Start with a multivitamin once a day. I feel that taking selenium, N-acetyl
cysteine and omega-3 oils are also important for people with HIV.
The next stages
After a few months, think about adding vitamin C, zinc and any other micronutrients that you can afford. The beauty of vitamins and micronutrients is if you
miss a dose or stop taking them, it is perfectly fine. Try to buy good quality
products. I would also recommend reading CATIE’s fact sheets and practical
guides on nutrition, multivitamins and micronutrients. Knowledge is power but
if it is not put into action, it is useless.
The best part of complementary and alternative medicine is having sex!
Yes, getting laid is a boost to the immune system! Let your imagination guide
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you. If you are in a relationship, spice up your love life. If you’re single, take a
chance and go on a date, fall in love.
5
Set yourself a goal
COMPLEMENTARY
The point of these therapies isn’t to make life more complicated than it needs
AND ALTERNATIVE
to be. I feel that if you set yourself a goal, whether it’s to have more energy, or
THERAPIES
to put on more muscle, or to be less stressed, and then you work toward it,
you’ll be successful.
Little baby steps are the way to start. Conduct a scan of your life. Determine
what you want to add, delete or enhance. Make a list of ten things you want to
do for your health. This list could include things as simple as taking a half hour
walk daily, or a multivitamin daily or soaking in the tub once a week. From this
list, pick two of the easiest and get started! Every six months or so, add one or
two more things from this list. If you have doubts, assume failure is impossible.
Give yourself a good reason to wake up every morning. Take joy in learning
new things for your body, mind and spirit. Expand your mind. If you have
access to the Internet, there is so much you can learn online for free. Most
important of all, do not be defined by HIV. You are so much more then the sum
total of your HIV serostatus, viral load and CD4+ cell count!
Resources
Practical Guides for People Living with HIV
CATIE’s practical guide series contains extensive information about
complementary and alternative medicine. See:
• A Practical Guide to Complementary Therapies for People Living with HIV
• A Practical Guide to Herbal Therapies for People Living with HIV
• A Practical Guide to Nutrition for People Living with HIV
• A Practical Guide to Managing HIV Drug Side Effects
The Positive Side
Health and wellness magazine contains articles about complementary
therapies, such as:
• The role of naturopathic medicine in HIV
MANAGING YOUR HEALTH
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• Sensual aromatherapy
• Introduction to Yoga
• In-te-grate
COMPLEMENTARY
Look under Complementary and Alternative Therapies in the e-zine index
AND ALTERNATIVE
(www.positiveside.ca)
THERAPIES
Plain and Simple Factsheets on Complementary Therapies
Available in multiple languages
In-Depth Factsheets on supplements
Comprehensive information for people living with HIV and their
care providers
These and many other relevant resources can be accessed on CATIE’s website
(www.catie.ca), through the CATIE Ordering Centre (www. orders.catie.ca) or
by calling CATIE at 1-800-263-1638.
NOTES
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5
NOTES
COMPLEMENTARY
AND ALTERNATIVE
THERAPIES
MANAGING YOUR HEALTH
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5
NOTES
COMPLEMENTARY
AND ALTERNATIVE
THERAPIES
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6
Your emotional
health
There is a connection between the mind and body.
While most people understand that living with HIV can
be stressful, they don’t always realize that emotions can
affect your body and your physical health, making it
more difficult to fight off HIV. This chapter explores your
emotional and mental health, its relationship with your
physical health, and the importance of paying attention
to your emotional health when you're living with HIV.
About the author
Evan Collins is a doctor, psychiatrist, researcher,
CONTENTS
• Self-esteem
• Stress
• Anxiety
• Depression
• Drug and alcohol abuse
• Seeking emotional support
• Seeking professional help
consultant, advocate and person living with HIV. His
involvement with HIV/AIDS dates back to 1984 when
he joined the board of the AIDS Committee of Toronto.
Over the years, he has served on numerous boards and committees,
including the CATIE board of directors, and was community co-chair for
AIDS 2006. He works as a doctor at Hassle Free Clinic in Toronto, as a
psychiatrist in a community mental health program, and as a policy and
organizational development consultant. He currently is President of the
Ontario HIV Treatment Network and is North American NGO delegate for
the Board of UNAIDS.
MANAGING YOUR HEALTH
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YOUR
EMOTIONAL HEALTH
Self-Esteem
Self-esteem is a term that describes how good or bad we feel about ourselves.
It is important because many emotional problems have their roots in poor selfesteem. After an HIV diagnosis, self-esteem can be affected if people with HIV
continue to blame themselves or others for becoming infected. Even after
many years of living with HIV, poor self-esteem can be reinforced by things like
stigma (social disapproval) and discrimination, social isolation or visible changes
in your appearance brought on by HIV. Poor self-esteem can make it difficult to
Poor self-esteem can
live a healthy and happy life with HIV. Addressing emotional problems often
starts with dealing with self-esteem.
make it difficult to live a
healthy and happy life
with HIV.
Stress
As a person with HIV, experiencing stress is very common. We fear getting
sick, worry about infecting others and fear that we will be discriminated against.
Even if we try not to think about the fears, the worry can eat away at us and
create chronic stress. Our bodies react with tension in our muscles, inability to
relax and other physical symptoms. The more constant the stress is, the more
it negatively affects our bodies. Some people cope with chronic stress well by
seeking support, developing spiritual practices, learning to relax and trying not
to worry too much about things they cannot control. Others react to stress
poorly by worrying too much or by relying on practices that create more problems—like abusing alcohol and drugs or having unsafe sex. Many studies have
shown that the more stress you experience and the more poorly you cope with
it, the more it will affect your immune system negatively.
If you feel that you are not coping well with stress, there are lots of things
you can do. You might consider talking to your doctor or a counsellor at your
local AIDS service organization. If you take comfort in your spirituality, you might
talk to somebody from your faith community. Sometimes just talking about the
stress in our lives can be helpful and put things in perspective. You might join a
local support group for people with HIV or a community program in meditation
or yoga. Often taking time to be good to ourselves can reduce stress and
promote a more positive outlook.
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Some things you can do about stress right now
• Breathe—concentrate on taking slow, steady breaths.
Find some time every day to watch your breath and slow it down.
• Relax—tense up each muscle in your body, one at a time, then
6
YOUR
EMOTIONAL HEALTH
release it to see how a relaxed muscle feels. Hot baths in sea salts
and getting a massage also help to relax muscles.
• Laugh—studies show that laughter reduces stress and boosts the
immune system. Watch a silly movie or learn some funny jokes.
• Appreciate the good things—this reinforces a positive attitude. Every
Sometimes just talking
day, try to count five different things in your life you are grateful for.
about the stress in our
• Talk about your fears—keeping your fears bottled up makes them
lives can be helpful and
worse. Find a friend or a counsellor with whom you can talk about
your biggest fears and worries.
put things in perspective.
• Learn stress reduction—there are many complementary therapies
that teach relaxation and stress reduction. Some community
organizations offer free massage, yoga and meditation classes.
• Live in the here and now—life with HIV can be all about living in the
past with regrets, or in the future with worry about what lies ahead.
Find some time every day to forget the past and future and live in
the moment.
Anxiety conditions can be
treated effectively with
Anxiety
counselling, behavioural
Some people react so poorly to stress that they develop anxiety conditions.
therapy or anti-anxiety
These can include panic attacks; phobias (intense fears about specific things
drugs, but require a
like needles, for example); somatization (experiencing physical symptoms that
do not have a physical cause); or generalized anxiety disorder (a nervousness
professional to diagnose
that interferes with everything you do). Anxiety conditions can be treated effec-
and treat them.
tively with counselling, behavioural therapy or anti-anxiety drugs, but require
professional diagnosis and treatment.
MANAGING YOUR HEALTH
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YOUR
EMOTIONAL HEALTH
Depression
Although everyone, with or without HIV, experiences short periods of feeling
sad or down, some people develop states of sadness and helplessness they
cannot shake. These are often accompanied by low energy, problems in sleeping,
eating or concentrating, and even feelings of wanting to commit suicide. These
feelings are known as depression. Depression is very common, with more than
40 per cent of people with HIV experiencing episodes of depression at one
time or another. Like other emotional problems, depression limits your quality
of life and interferes with your immune system’s ability to fight HIV. As well,
depression can often undermine your ability to care for your health. It may lead
to poor anti-HIV drug adherence, drug and alcohol abuse or unsafe sex.
The causes of depression may include your genetics and family history,
past experiences of loss, social isolation without support of friends and family,
or the consequences of prolonged recreational drug use. Depression may also
More than 40 per cent
of people with HIV
be brought on by some medications like the anti-HIV drug efavirenz (Sustiva,
and also in the combination pill Atripla) or interferon treatment for hepatitis C.
HIV disease itself can also be a factor in depression. Certain conditions related
experience episodes of
to advanced HIV disease such as anemia (low red blood cell count), severe
depression at one time
fatigue and dementia can cause symptoms that feel very similar to depression.
or another.
Low energy and feeling helpless are key symptoms of depression that
make it hard for people to seek help. However, depression is very treatable
and, with the right therapy, you can feel much better. Effective treatment for
depression can include individual and group counselling, cognitive behavioural
therapy, which alters depressive thinking, and antidepressant drugs.
Drug and alcohol abuse
Some people with HIV use substances like recreational drugs and alcohol to
help cope with poor self-esteem, stress, anxiety and depression. Sometimes
this use can lead to addiction and becomes an emotional problem itself. This
can happen very gradually: often people don’t realize that their social drinking
or recreational drug use is getting out of hand. Substance abuse can directly
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harm the immune system. It can also interfere with your ability to stay healthy
by contributing to poor anti-HIV drug adherence or poor sleep and nutrition.
If you or others identify your drug or alcohol use as a problem, there are
many resources to help you get it under control. If you are not ready to reduce
or abstain, another approach is harm reduction, which tries to lessen the
6
YOUR
EMOTIONAL HEALTH
potential harm associated with substance use. Harm reduction techniques like
education, distribution of clean drug-use equipment, and promotion of safe sex
will help reduce transmission of HIV and hepatitis and other problems associated
with drug and alcohol abuse (see Chapter 4, Healthy living).
If you or others identify
your drug or alcohol use
Seeking emotional support
as a problem, there are
In dealing with any emotional problem, the first step is always admitting you
many resources to help
need help. Next comes taking the steps to seek it. Especially after first learning
that you are HIV-positive, it can be very easy to become isolated from friends,
you get it under control.
family and community. Experiences of stigma and discrimination can reinforce
this further. Any of the emotional and mental health issues discussed above will
be made worse by social isolation and can be helped by seeking support from
others. It is helpful to have others to talk to, laugh with, cry with and count on
for support and practical assistance.
Telling others you have HIV (disclosure)
It is important to decide whom you can tell about being HIV-positive. This is
called disclosure. To help you decide whom you can tell, ask yourself the
following questions:
It is helpful to have
others to talk to,
laugh with, cry with and
• Whom do you feel needs to know?
• Who will not judge you?
• Whom can you feel safe with?
count on for support and
practical assistance.
• Who is a good listener?
• Who will support you unconditionally?
• Who will respect your privacy and only tell others if you ask them to?
• Who is sensible, reliable and practical and might be able to help you if
they knew?
MANAGING YOUR HEALTH
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For the most part, you don’t have to tell anybody until you’re ready, and you
don’t have to tell everyone at once. You may choose to tell different people for
different reasons. It may seem very hard at first, but will become easier the
YOUR
longer you live with HIV. The one exception is that you are obliged by law to
EMOTIONAL HEALTH
disclose your HIV status to former, current and future sexual partners and
people with whom you share drug equipment. Sharing this information can be
very difficult, but there are counsellors at some HIV testing clinics or with Public
Health who can help you plan how to do this, or even do it for you. For more
information about disclosure and sexual partners (see Chapter 7, Your sexual
You are a good judge of
whom you should tell
about your HIV status,
so trust your feelings.
health, and Chapter 21, Legal issues). Although you may experience rejection
in telling friends, families, co-workers, sexual partners or people you have
shared drug equipment with, often the reactions are not as bad as you fear.
You are a good judge of whom you should tell about your HIV status, so trust
your feelings. Disclosing to children presents special challenges. For more
information about disclosing to children, see Chapter 16, Children and HIV.
The people you decide to tell may need some accurate information about
HIV, including how it is and is not transmitted. This book might be useful for
them. Many AIDS service organizations have counsellors who can help you
prepare for disclosure to sexual partners, people you have shared drug equipment with, friends, family and co-workers and give you pamphlets you can give
to the people you tell.
Start building a network
Support from partners, families and friends
Once you decide whom you can safely disclose your HIV status to, you can
of people you can rely
start building a network of people you can rely on for companionship and
on for companionship
support. Obviously, you will count on different people for different things. Some
and support.
friends or family members are good for socializing with; some are ones you
could talk to if you are feeling down. Still others are those you might rely on to
accompany you to the doctor or to bring you some soup if you get sick. Like
all things, it takes time and hard work to find the people you can rely on and
build healthy relationships with.
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Support from the community
Many AIDS service organizations have counsellors who can provide support
either individually or in groups, as well as practical assistance in a number of
areas. In addition to these support services, organizations often hold social
events that allow people with HIV to meet and socialize together. Volunteering
6
YOUR
EMOTIONAL HEALTH
for an HIV organization is a great way to meet new people and build friendships
among people who are HIV-positive themselves or non-judgmental about HIV.
Volunteering also gives people a sense of accomplishment and worth.
If you need more support
Seeking professional help
than friends and family
If you need more support than friends and family can offer, there are places you
can offer, there are
can go for professional help. If you are unsure where to start, many communities
places you can go for
have telephone hotlines that can direct you. Some of these are HIV-specific,
and others deal with mental health problems. Although many of the mental
professional help.
health hotlines are advertised as crisis lines and are intended for people in an
emergency, they are often very willing to talk to people who aren’t in a crisis,
but who have questions about where to seek further help for emotional issues.
Doctors
Either your family doctor or your HIV specialist can help you if you tell him or
her how you are feeling. Many doctors do counselling themselves, and many
HIV specialists work with social workers or counsellors available to people with
Many doctors do
HIV who have emotional problems. Psychiatrists are doctors with extra training
counselling themselves,
in mental health issues: your doctor might refer you for an assessment and/or
and many HIV specialists
treatment if this is required. Psychiatrists are often helpful if your emotional
problems are complicated by medical problems or drug side effects.
work with social
workers or counsellors
Precription drugs
available to people
There are many effective prescription drugs that can treat specific emotional
problems like depression and anxiety. Other drugs can be used to treat certain
symptoms, like using sedatives for sleep problems. As with any drug, there can
MANAGING YOUR HEALTH
with HIV who have
emotional problems.
73
6
be side effects and interactions with anti-HIV drugs that need to be managed.
If you choose to try prescription drugs for an emotional problem, make sure
your doctor understands both HIV and mental health issues.
YOUR
EMOTIONAL HEALTH
Counselling and psychotherapy
There are many types of counselling and psychotherapy that are used to help
people with specific emotional problems. Some of these are individual (where
it is just you with the therapist) and some of them are done in groups (where
you and other people are seen together by a therapist). Sometimes they are
provided in a private office, and other times in a clinic, hospital or AIDS service
organization. The type and setting of service you receive will depend on the
problem you need help with, and which services are available in your community.
Some of these services are paid for through your provincial or territorial health
plan or are free through a community organization. A broader range of services
will be available privately if you pay. Often, the cost will be reimbursed by an
No one should face
employer health plan, or it will be considered a tax-deductible health expense
emotional problems
on income taxes (see Chapter 20, Money matters).
alone. There is
help available.
Complementary and alternative therapies
Numerous complementary and alternative therapies can help with mental
health problems either by treating the underlying problem or relieving symptoms
of the problem (such as sleeplessness or stress). Some of these therapies
include acupuncture, light therapy and aromatherapy. Some natural health
products have been shown to help depression, but one of these, St. John’s
wort, will interfere with anti-HIV drugs. Another, called kava kava, can cause
liver damage. Make sure your doctor knows what you are taking. See Chapter
5, Complemenary and alternative therapies, for more information.
Living with HIV can be as hard emotionally as it is physically and, given the
mind–body connection, one affects the other. No one should face emotional
problems alone and there is help available.
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Resources
The Positive Side
Health and wellness magazine contains articles about emotional health,
6
YOUR
such as:
EMOTIONAL HEALTH
• De-stress yourself
• Lady sings the blues
• How does it feel?
Look under Health and Well-Being in the e-zine index (www.positiveside.ca)
These and many other relevant resources can be accessed on CATIE’s website
(www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by
calling CATIE at 1-800-263-1638.
NOTES
MANAGING YOUR HEALTH
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YOUR
EMOTIONAL HEALTH
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Your sexual health
7
Sexuality and sexual practices are incredibly diverse. Although we
may think we know what we mean when we refer to “gay sexuality”
or “what straight people do,” as often as not we realize that we
were thinking in limited or even stereotypical ways. The diversity of
sexuality and the variety of sexual practices presents challenges
in writing clearly and completely about sexual health and HIV.
Hopefully, this chapter meets the challenges of clearly explaining
the relationship between HIV disease and sexual health for all
CONTENTS
• What is sexual health?
• About safer sex
people with HIV and their partners, because HIV disease has
important consequences for all of us. The chapter covers important information for people living with HIV about what we can
do to ensure that our sexual lives are as healthy and as fulfilling
as possible.
• Preventing and treating
sexually transmitted
infections in both partners
• Sexual dysfunction
About the author
John Maxwell is a manager at AIDS Committee of
• Relationship issues
Toronto (ACT). He has been working in the communitybased HIV movement for more than 15 years. He has
extensive experience in the area of HIV prevention/sexual
health promotion, and has been an active participant in many communitybased research projects. In addition to his work at ACT, he is a member of
numerous local, provincial, national and international HIV working groups.
In 2007, John was honoured at the Canadian Association for HIV
Research conference with the Red Ribbon Award, which was presented
to him for “outstanding service to the cause of research in Canada that will
lead to increased understanding of the treatment and prevention of HIV/AIDS,
while enhancing the quality of life for those living with this disease.”
MANAGING YOUR HEALTH
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YOUR SEXUAL HEALTH
What is sexual health?
Taking care of your health includes taking steps to ensure that your sex life is
as healthy as possible. Sexual health means more than the absence of sexually
transmitted infections, or the absence of other medical conditions that might
prevent you from having a fulfilling sex life. Sexual health is not just the lack of
such ailments or conditions, but the presence of a satisfying, respectful and
beneficial sexual part of your life.
To be sexually healthy means enjoying a fulfilling and respectful approach
To be sexually healthy
means enjoying a
fulfilling and respectful
approach to sexuality
and sexual relationships.
to sexuality and sexual relationships. Signs of sexual health include the ability
to have pleasurable and safe sexual experiences that are consensual and free
from discrimination and violence. To achieve and maintain sexual health, the
sexual rights of all persons must be protected, respected and fulfilled.
But in the context of HIV, it’s important to think about more than just your
own individual sexual health. Since sex is, for the most part, a social act that
takes place between or among people, your own sexual health is inescapably
linked to the sexual health of your partners. The idea that you need to be thinking
about yourself and your partner(s) may seem obvious at first, but not thinking
this idea through can put you in situations of risk for transmission of HIV.
A note about language: this chapter has been written so that the information
Because having safer sex
reduces—but does not
contained in it is applicable to all people with HIV: men, women and trans people,
gay, lesbian and straight.
entirely prevent—the
possibility of transmitting
About safer sex
HIV or a sexually
A very important aspect of sexual health is the ability to have safer sex. For
transmitted infection,
people with HIV, safer sex involves learning and practising behaviours that
reduce the chances of transmitting HIV or other sexually transmitted infections
safer sex is always
(as well as hepatitis A, B and C and parasites) to our partners and reduce the
about the negotiation of
chances we will get re-infected with HIV or get a sexually transmitted infection
risk between you and
from them.
Because having safer sex reduces—but does not entirely prevent—the
your partners.
78
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always about the negotiation of risk between you and your partners. You try to
negotiate risk or arrive at an agreement between the level of risk that is acceptable to you and the level of risk that is acceptable to your partner.
The Canadian AIDS Society publication HIV Transmission: Guidelines for
7
YOUR SEXUAL HEALTH
Assessing Risk is an excellent starting point to learn about safer sex. This publication is available online at the CATIE ordering centre.
However, we are learning a lot about other factors that affect our risk for
getting or transmitting HIV—things like co-infections, the presence of other
sexually transmitted infections, the health of our mucous membranes, even our
age. With this knowledge, questions (as yet unanswered) continue to emerge
about the complex relationship between sexual health, safer sex and HIV.
Using condoms for intercourse
We are learning a lot
about other factors that
affect our risk for getting
If you’re having intercourse (meaning putting a penis into a vagina or an anus),
or transmitting HIV—
it is very important always to use a latex condom. Polyurethane (plastic) con-
things like co-infections,
doms protect against HIV, sexually transmitted infections and pregnancy, but
the presence of other
break more easily than latex ones. Natural (lambskin) condoms do not provide
protection against HIV. It doesn’t matter whether your penis is going inside
sexually transmitted
someone else or his penis is entering you. HIV and other sexually transmitted
infections, the health of
infections go both ways.
our mucous membranes,
Use a water-based lubricant (lube) with condoms. There are many brands
available. Some AIDS service organizations provide free packages of lube as
even our age.
well as condoms. Never use oil-based skin lotions, cooking oil, Vaseline,
Crisco, butter or anything oily as these can cause condoms to break. Drugs
used to treat problems in your anus or vagina, such as suppositories for fungal
infections or creams for hemorrhoids, can also damage condoms.
All condom packages should carry an expiry date. Throw them away if the
date has passed. Never store condoms in direct sunlight or in places that are
very hot or cold.
Condoms for men should be placed on the penis before starting intercourse
or penetration. HIV can be transmitted through pre-cum and vaginal and anal
secretions at any time during intercourse. Put a drop of lube inside the tip of
the condom before you put it on. Place the condom on the penis with the tip
MANAGING YOUR HEALTH
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YOUR SEXUAL HEALTH
sticking out. Squeeze the tip so that there are no air bubbles in it. Unroll the
condom to the base of the penis. If you’re having anal sex (putting a penis in a
partner’s anus), make sure the condom is always slicked up with lots of waterbased lube. If you want to be really careful, use an extra-strong condom. If one
partner is allergic to latex, use both a natural (lambskin) condom and a latex
one, keeping the natural one next to the skin of the allergic person. You can
also use a polyurethane condom instead of a natural condom.
When you’re finished having sex, take the condom off while the penis is still
hard. Hold the open end of the condom while the penis comes out to prevent
any semen (cum) from leaking out. Throw the condom out. Never use a condom
more than once.
Never use latex condoms that are lubricated with nonoxynol-9 (a spermicide), as this can cause irritation, increasing the risk of HIV transmission.
Women who have sex with men can protect themselves from pregnancy with
contraceptives (birth control pills, spermicides, for example), but until recently
had no way of protecting themselves against sexually transmitted infections
and HIV except by convincing their sexual partners to wear condoms.
A condom for women (made of polyurethane, and sometimes called a
“female condom”) is available, and it gives women another option for protection.
It’s shaped like a large condom and has two flexible rings, one on the top and
one on the bottom (where it’s open). The top ring is inserted into your vagina
and covers your cervix (much like a diaphragm). The bottom ring remains outside your vagina. It can be inserted minutes or hours before intercourse.
Never douche before or after anal or vaginal intercourse (even if the condom
breaks). Douching may irritate your mucous membranes (the skin lining your
vagina or rectum) and increase the risk of HIV transmission.
There is evidence that people with HIV may be at increased risk for getting
infected with the hepatitis C virus if they have unprotected sex. Although the
exact way this happens is unknown, co-infection with HIV and the hepatitis C
virus is a very serious health situation.
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MALE REPRODUCTIVE SYSTEM
7
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FEMALE REPRODUCTIVE SYSTEM
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YOUR SEXUAL HEALTH
Oral sex
Oral sex (contact between the mouth and genitals) without using a latex barrier
is considered a low-risk activity for HIV transmission. If you are HIV-positive and
you perform oral sex on your partner, the chances of your transmitting HIV to
your partner are extremely low. If your partner is performing oral sex on you, it
is considered low risk. This means that HIV transmission can happen, but the
chances are much smaller than the risks associated with anal or vaginal intercourse without a condom. The main risk in oral sex is getting or passing on
sexually transmitted infections other than HIV, as well as hepatitis and parasites.
The risk of HIV transmission increases, however, if your partner has cuts or
sores on or inside the mouth. The same is true if your partner’s gums bleed.
If you want to have oral sex as safely as possible, you or your partner
should put a condom on the penis or cover the labia (the outer lips of the vulva)
or anus with a dental dam (one of the little rubber squares that your dentist
uses) or plastic wrap (use the non-microwaveable kind). Or, instead of a dental
dam, use a condom in the following way: first cut the top off, then cut the
condom lengthwise and open it up. Safer sex guidelines suggest using a nonlubricated condom for oral sex. If you don’t use a condom, dental dam or
plastic wrap for oral sex, neither you nor your partner should perform oral sex
for at least two hours after brushing or flossing your teeth, since brushing or
flossing can cause tiny cuts in the lining of your mouth. If you or your partner
smoke or have nutritional problems, your gums can take up to two hours to
heal after these activities.
Sex toys
Dildoes and other sex toys can be a fun part of safer sex. You just have to
make sure that you keep them clean and don’t share them with sexual partners.
Wash them with soap and water before and after you use them. Better yet, use
warm water and a little bit of bleach and then rinse them really well. Or, if you
don’t want to bother with all that, use condoms on your toys, or wrap them in
non-microwaveable plastic wrap. Don’t use your sex toy in one person’s body
and then put it into someone else’s without changing the condom or plastic.
Ideally, everyone should have his or her own set of toys that are never used
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inside anyone else. Everyone living with HIV, and people with the bleeding disorder hemophilia, in particular, should be cautious of anything going into the
body that might lead to heavy bleeding.
You can get more information on safer sex and sexually transmitted infec-
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YOUR SEXUAL HEALTH
tions from your nearest AIDS service organization or public health office. You
(or you and your partner or partners) may also want to talk about sex with a
counsellor. Counsellors are available at many AIDS service organizations.
What’s safe and sexy?
You can get more
You and your partners can have sex that is safe—in other words, where
information on safer sex
there is no possibility of transmitting or getting HIV—as long as the sexual
and sexually transmitted
activities that you engage in do not involve any contact with blood or
sexual fluids. Learning how to bring yourself and your partner to orgasm
infections from your
through masturbation is very safe and very sexy. You can masturbate
nearest AIDS service
together while reading or looking at porn, you can have phone and
organization or public
cyber sex, you can tell each other your sexual fantasies while masturbating, you can have or give an erotic massage, as long as no sexual
health office.
fluids are exchanged. Perhaps Tantric sex, which views sex as a path to
greater self-awareness without concentrating on orgasm as the “goal,”
has something to offer you.
If your definition of abstinence includes having great sex alone,
try out porn and experiment with sex toys to please yourself. Womenfocussed sex stores can be found in some cities and they often offer
workshops in masturbation for women who want to learn more about
self-pleasure.
Safer sex when both of you are HIV-positive
Some HIV-positive people choose not to use condoms with other HIV-positive
sexual partners. However, there are still risks that go with unprotected sex,
even between HIV-positive people. So, while you may still choose to make this
decision, it has to be made with some care.
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YOUR SEXUAL HEALTH
First of all, it’s important to be certain your sexual partners are also HIVpositive before deciding not to use condoms. People may make assumptions
about each other’s HIV status that could be wrong. Don’t assume you know
your partner’s status; find out for sure.
All of the sexually transmitted infections we will talk about later in this chapter
can be passed between HIV-positive people. In fact, people with HIV may be
more vulnerable to getting infected with sexually transmitted infections. Hepatitis
C can also be transmitted through unprotected sex.
Even HIV itself can sometimes be passed on from one HIV-positive person
Don’t assume you know
your partner’s status;
find out for sure.
to another. (This is called reinfection or superinfection.) You may wonder, what’s
the problem with getting HIV if you already have it? The danger lies in the fact
that not all HIV is the same. It’s possible to be reinfected with a strain that could
make you sicker than the one you already have, or one that’s resistant to the
anti-HIV drugs you’re taking.
Safer sex and disclosing your HIV status
Sometimes people are afraid to talk about (or disclose) their HIV status or the
issue of safer sex because of how other people may react. This fear can make
When thinking about
disclosing your HIV
a lot of sense, especially if you’re worried about rejection or violence.
Discussing your HIV status with someone you’re planning to have sex with
is very different from telling a healthcare provider or a support worker. When
status to sexual
thinking about disclosing your HIV status to sexual partners, there are many
partners, there are many
factors to consider. Do you tell someone as soon as you meet him or her, or
factors to consider.
do you wait until you are going to have sex? Does it make a difference whether
this is a one-night stand or an ongoing relationship? What if sex work is how
you make your living?
There have been an increasing number of legal cases in which people
who knew they were HIV-positive have been taken to court for placing another
person at risk for HIV infection through unsafe sex. Some people have been
charged even though they disclosed that they were HIV-positive before having
unsafe sex. If you need advice on how to get your partner(s) to have safer sex,
or if you have fears about your relationship(s), safety or legal issues, contact
someone at your nearest AIDS service organization. For more information
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about disclosure of your HIV status (see Chapter 6, Your emotional health,
Chapter 8, Positive prevention, and Chapter 21, Legal issues).
Building on the foundation of safer sex
7
YOUR SEXUAL HEALTH
In addition to practising safer sex, there are other strategies that you can use
to reduce the risk of transmitting HIV to your partners and to keep yourself
healthy. However, we don’t know how effective these strategies are yet. They
include keeping your viral load as low as possible through effective anti-HIV
treatment and adherence, and making efforts to prevent and treat sexually
transmitted infections in both you and your partner(s).
Your viral load is a measure of the amount of HIV in your blood (see
Chapter 9, Monitoring your health). Many people wonder if having a low or
undetectable viral load makes them less infectious. This isn’t necessarily the
case. That’s because virus is always present in your body, even if levels in your
Even if viral load
levels in your blood
are undetectable, levels
of HIV may be higher
blood are too low to measure. And, even if viral load levels in your blood are
in other body fluids like
undetectable, levels of HIV may be higher in other body fluids like semen or
semen or vaginal or
vaginal or rectal fluids.
Research into the different biological factors (such as viral load, the pres-
rectal fluids.
ence of genital sores, the presence of sexually transmitted infections and type
of intercourse) that affect the risk of HIV transmission during sex is ongoing.
The picture that appears to be emerging is that HIV risk is changeable. Over
the course of time, people with HIV may experience periods of heightened
infectivity, while at other times their infectivity may be quite low. Likewise,
susceptibility of people who are HIV-negative can vary over time. Having a
better understanding of how HIV is transmitted can help us make decisions
about safer sex. Unfortunately, we don’t yet know all of the factors involved in
accurately predicting transmission risk.
MANAGING YOUR HEALTH
We don’t yet know all
of the factors involved
in accurately predicting
transmission risk.
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YOUR SEXUAL HEALTH
Preventing and treating
sexually transmitted infections
in both partners
A sexually transmitted infection is an infection that can be transferred from one
person to another through sexual contact. Sexual contact is more than just
vaginal or anal sexual intercourse. Sexual contact also includes oral sex and
the use of sex toys such as vibrators. HIV is considered a sexually transmitted
If you’re sexually
active, it is good idea
to get tested for
sexually transmitted
infections regularly.
infection. Others include chlamydia, gonorrhea, syphilis, genital herpes, genital
warts, hepatitis A, B and C and parasites.
Some sexually transmitted infections, such as herpes, genital warts and
syphilis, can be more easily transmitted than HIV, and condoms may not be as
effective at preventing infection.
Many sexually transmitted infections can be transmited to babies during
pregnancy or delivery. Syphilis, like HIV, can be pased on to the baby in the
womb. Others, such as gonorrhea, chlamydia, hepatitis B and C and genital
herpes, can be transmitted during delivery.
People living with HIV may get some sexually transmitted infections more
easily than other people, and often have more serious symptoms. If you have a
sexually transmitted infection that isn’t treated, this can increase your ability to
pass on HIV to other sexual partners if you do not practice safer sex. You can
reduce your chances of getting or passing on sexually transmitted infections by
practising safer sex. If you’re sexually active, it is good idea to get tested for
sexually transmitted infections regularly. Speak with your doctor about testing
for sexually transmitted infections.
Chlamydia
Chlamydia is one of the most common sexually transmitted infections. Symptoms
of chlamydia include a burning feeling when you’re urinating, and a discharge
from your penis, vagina or rectum (ass). Chlamydia can also infect your throat
and eyes. Many people, especially women, won’t have any symptoms. If left
untreated in women, chlamydia can cause a serious infection called pelvic
inflammatory disease. In men, chlamydia can cause an inflammation of the
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epididymis, the thin tube that connects the testes to the urethra (the tube you
pee through). Chlamydia can be treated easily with antibiotics. If you have
chlamydia, anyone you’re having sex with should be treated; otherwise, you
and your partner(s) can get reinfected again and again. Chlamydia is transmitted
7
YOUR SEXUAL HEALTH
easily through unprotected oral, vaginal or anal sex.
LGV
LGV stands for lymphogranuloma venereum and is caused by a type of
chlamydia bacteria. LGV is common in Africa, Asia, South America and the
Caribbean. There have also been outbreaks among gay men in Europe, the
United States and Canada. Both men and women can be infected with LGV.
The infection has three major stages. In the first stage, three days to three
weeks after getting infected, there may be a small, painless sore where the
bacteria got into your body (mouth, anus, vagina or penis). Many people don’t
get a sore or don’t notice it. You will be able to give LGV to others from this
point. In the second stage, 10 to 30 days later (or even longer), your glands
may become painfully swollen. You may feel ill and have a fever, and you may
have discharge from your penis, vagina or anus. If left untreated, LGV can later
go on to cause serious complications. This third stage of infection can happen
years after the first infection. Hemorrhoid-like growths can appear around your
anus. The genitals can swell massively and the rectum (inside your ass) can be
seriously damaged; you may need to have surgery.
Most symptoms of the first two stages can be easily missed. As long as it’s
treated before it gets to the third stage, LGV is quickly cured with three weeks
of antibiotics and leaves no lasting damage. In women, LGV often shows no
symptoms until the third stage.
Gonorrhea
Gonorrhea may cause a thick discharge from your penis, rectum or vagina, and
sometimes a burning feeling while you’re urinating. In many people, especially
women, there may be no symptoms. Gonorrhea can also occur in your throat if
you have unprotected oral sex. It can develop into an ongoing, serious infection
if it isn’t treated. It can spread through your blood to other parts of your body,
MANAGING YOUR HEALTH
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and can lead to sterility—the inability to have children. In women, it can cause
pelvic inflammatory disease. Gonorrhea is treated with antibiotics. If you have it,
anyone you’re having sex with should be checked and treated if necessary.
YOUR SEXUAL HEALTH
Syphilis
If left untreated, syphilis goes through three stages, with different symptoms
at each stage. In the first stage, a single chancre (painless sore) forms in or
around your penis, vagina, rectum, mouth or throat. The chancre will disappear
on its own in three to six weeks, without treatment. The second stage happens
two to four weeks after the disappearance of the chancre. The symptoms of
the second stage are sores and a rash that may appear over your entire body
and/or on the palms of your hands and soles of your feet. You may feel like
you have the flu, with headache and aches and pains in your joints or bones.
In addition, you may experience hair loss and flat, wart-like growths inside
your anus or vagina. Without treatment these symptoms may come and go.
However, you are only infectious during the first year. Symptoms of the third
stage can be very serious and can result in blindness, heart or brain damage
and, in some cases, death. Third-stage syphilis may take many years to
develop, but people with HIV seem to develop third-stage syphilis much faster
than others.
Syphilis is diagnosed by a series of blood tests. The first test, called the
The usual course of
VDRL, is a screening test. Usually, if this test is negative, you don’t have
syphilis may be faster
syphilis. However, people with HIV may have false-negative VDRL tests.
and harder to treat in
people with HIV.
(That is, the test says you don’t have syphilis, even though you actually do.)
If you suspect you have been exposed to syphilis, you may want to ask your
doctor to run two other tests, called the FTA-ABS and the MHA-TP.
The usual course of syphilis may be faster and harder to treat in people
with HIV. Syphilis is treated with large doses of benzathine penicillin, given by
injection into your butt cheeks over three consecutive weeks. Penicillin is the
preferred treatment for syphilis. If you’re allergic to penicillin, your doctor may
“desensitize” you to its effects. This is done by giving you tiny doses at first,
and slowly building up the dosage until you can take the full amount.
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Condoms can reduce but do not eliminate the risk of transmitting syphilis
when used for anal, vaginal or oral sex. Syphilis can also be transmitted to a
baby in the womb or during delivery.
In the past few years, there have been outbreaks of syphilis in several
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YOUR SEXUAL HEALTH
Canadian cities. Many of these infections have been among people living
with HIV.
Genital herpes
Genital herpes is caused by a virus known as herpes simplex 2, or HSV-2.
(“Cold sores” around the mouth are usually caused by a related virus, HSV-1).
Symptoms of genital herpes include itching or tingling around the infected area
(such as the anus, vagina, penis or testicles), an outbreak of painful blisters or
sores that later form scabs, and sometimes a mild flu-like illness. It may take
two to three weeks for symptoms to go away. Doctors can often diagnose
herpes simply by recognizing the symptoms, but infection can only be confirmed
by swabbing the blisters and sending the fluid to the laboratory.
Herpes blisters may show up two days to three weeks after contact with
an infected person, but can take months or years to appear. Once you are
infected, the herpes virus stays in the body permanently, usually causing
periodic outbreaks of blisters and symptoms. Some people have monthly out-
There’s no cure for
herpes infection,
breaks, some less frequently, and some people (about one in 10) never have
but treatment can reduce
another outbreak after the first. Between outbreaks, the virus stays in the body
the symptoms and speed
in an inactive state. Stress, menstruation, poor diet, lack of rest, illness, and
exposure to extreme heat, cold or sunlight seem to trigger outbreaks for some
up recovery.
people. Others don’t notice any special reason for an outbreak.
Condoms can reduce the risk of transmission, but they don’t eliminate it,
since condoms do not always cover the infected area. The herpes virus can be
passed on during skin-to-skin contact—mouth to genitals, genitals to genitals,
genitals to ass and mouth to ass. It can be transmitted when there are no
symptoms present, as well as by direct contact with a sore. As with all sexually
transmitted infections, pregnant women can pass the virus to their babies
during delivery.
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YOUR SEXUAL HEALTH
There’s no cure for herpes infection, but treatment can reduce the symptoms
and speed up recovery. The possibility of repeated outbreaks varies from person
to person. In time, outbreaks may become less frequent or stop altogether.
However, people with severely weakened immune systems (very low CD4+
cell counts) can experience more severe and more frequent outbreaks. Having
herpes also makes it easier to transmit or be infected by HIV.
HPV and genital warts
The human papillomavirus (HPV) can cause genital warts. These warts appear,
often in large numbers, around the head of your penis, on your vulval lips, in
your vagina, on your cervix, on your anus (your asshole), in your rectum
(inside your ass) or around your groin area. The warts are ugly but generally
painless. They may make sex less pleasant. The warts are usually removed
with liquid nitrogen.
The human papillomavirus is associated with cervical dysplasia (abnormal
cells of the cervix) and cervical cancer in women, and with anal dysplasia
Practising safer sex and
keeping it sexy can be a
challenge for everyone.
(abnormal cells of the anus) and anal cancer in both men and women.
Women who have HIV should have regular Pap tests. Men who have had
the human papillomavirus should have regular rectal exams and possibly Pap
tests of the rectum, where available. Condoms reduce but do not eliminate
the risk of transmission. Vaccination can prevent some strains of papillomavirus
infection. This may reduce the likelihood of getting warts or cancers. Vaccination
may have a role to play for people living with HIV—especially if given before
exposure to the papillomavirus strains targeted by the vaccine.
Hepatitis A, B and C
For more information on hepatitis, A, B and C see Chapter 12, HIV-related
infections and cancers.
Sexual dysfunction
Practising safer sex and keeping it sexy can be a challenge for everyone.
Sexual dysfunction can be defined as any difficulty during sex that prevents the
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individual or couple from enjoying sexual activity. Living with HIV can increase
the challenge, as certain anti-HIV drugs might cause problems in becoming or
staying aroused. Using a condom can interrupt the moment and make this
even more difficult. It is important to talk to your doctor or other healthcare
7
YOUR SEXUAL HEALTH
provider because, in many cases, sexual dysfunction can be treated and you
can have a fulfilling and safe sexual life.
Relationship issues
Beginning and maintaining a relationship can be challenging. Living with HIV
Many people with
can add a complication and may make a romantic or sexual relationship seem
HIV are in fulfilling
impossible. Still, many people with HIV are in fulfilling relationships, some with
relationships, some with
partners who are HIV-negative and others with partners who are also living with
HIV. Some people with HIV choose not to focus on romantic or sexual relationships and are satisfied to focus on relationships with friends and family.
People in relationships may work to make decisions together, including
decisions about sexual activities and sexual health. However, partners in rela-
partners who are
HIV-negative and others
with partners who are
also living with HIV.
tionships may find it hard to balance each other’s concerns, needs and influence. When one partner has more power and control than the other, it is
important to talk about this imbalance. Power imbalances in relationships can
develop for all sorts of reasons. For example, one partner might earn more
money and the other is dependent on him or her for living expenses. Power
imbalances can change: one partner might have power in one circumstance
but not in another.
Be aware of the power you hold in your relationship. Make sure it doesn’t
prevent you and your partner from talking about things that are important to
each of you. Make sure that both you and your partner(s) are able to communicate freely.
Sometimes the use of unequal power, or the fear that it might be used,
might make it difficult for you to insist on things that are important to you, such
as condom use. If this is the case, talk to someone—a friend, supportive family
member or a community organization.
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YOUR SEXUAL HEALTH
Resources
HIV Transmission: Guidelines for Assessing Risk
National guidelines from the Canadian AIDS Society (www.cdnaids.ca)
The Positive Side
Health and wellness magazine contains articles about health living,
such as:
• Sexual healing
• Magnetic [serodivergent] couples
• HIV, sex and viral load
• Herpes: the other “H” word
Look under Health and Well-Being in the e-zine index (www.positiveside.com)
Pozitively Healthy: a gay man’s guide to sex and health
Booklet on sexual health for gay men living with HIV from the Poz
Prevention Working Group of the Ontario Gay Men’s Sexual Health Alliance
In-Depth Factsheets on sexually transmitted infections
Comprehensive information for people living with HIV and their
care providers
Family planning options: a guide for serodiscordant couples
Booklet from the Canadian Hemophilia Society (www.hemophilia.ca)
Condoms. Unwrapped. The ins and outs of condoms for gay and bisexual men
Booklet from the AIDS Committee of Toronto (www.actoronto.ca)
Cruising: the ins and outs of hooking up for men
Booklet from the AIDS Committee of Toronto (www.actoronto.ca)
Sexuality and U
Information and education from the Society of Obstetricians and
Gynaecologists of Canada (www.sexualityandu.ca/home_e.aspx)
STD Resource
Comprehensive information on sexually transmitted infections from the
British Columbia Centre for Disease Control (www.stdresource.com)
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
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7
NOTES
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NOTES
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8
Positive
prevention
Positive prevention, or poz prevention, is a way of reducing
HIV transmission by involving HIV-positive people in
prevention strategies and prevention work. It builds on
years of thought and attention that people living with
HIV have given to HIV prevention. This section is an
introduction to positive prevention and a step toward
making it useful in practical ways for those of us living
with HIV.
CONTENTS
• What is positive
prevention?
• Why is positive
prevention important?
• Principles of positive
prevention
• Some things to think about
About the author
David Hoe’s work on HIV/AIDS over the last 20 years
includes work in the community and being an advisor
to governments. David is a person living with HIV
and is a personal life coach in Ottawa. His HIV work
now focuses on advocating for new ways to engage people with HIV in
HIV prevention. As part of this work, David is currently working with the
Positive Prevention Working Group of the Ontario Gay Men’s Sexual
Health Alliance.
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POSITIVE PREVENTION
What is positive prevention?
Positive prevention, or “poz prevention,” is a way of reducing HIV transmission
specifically designed by and for people living with HIV. For many years, HIV
prevention campaigns were directed mainly at HIV-negative people, focusing
on how they could protect themselves from getting HIV. This neglected to
consider how people with HIV can contribute to HIV prevention.
Positive prevention resources
Positive prevention is a
way of reducing HIV
transmission specifically
designed by and for
people living with HIV.
In 2000, the British Columbia Persons with AIDS Society (BCPWA)
began to work on positive prevention. You can find BCPWA’s online poz
prevention resources at:
www.bcpwa.org/empower_yourself/positive_prevention.
At about the same time in the United States, the National
Association of People with AIDS (NAPWA) set out their Principles on
Prevention with Positives. You can find NAPWA’s online poz prevention
resources at: www.napwa.org/resources.
The Ontario Poz Prevention Working Group of the Gay Men’s
Sexual Health Alliance has published a guide for positive gay men with
advice on sex and sexual health. The guide, Pozitively Healthy, is available
from the CATIE ordering centre at: www.catie.ca.
Positive prevention is a set of ideas about how people with HIV can
contribute to the shared responsibility of reducing HIV in our communities. In
practical terms, it is about taking better care of ourselves and the people we
connect with. It is also about having the necessary services and environment
to support us to do this over our lifetimes. Positive prevention aims to:
• empower people with HIV and the people with whom we have sex;
• promote healthy relations with sexual partners;
• improve the conditions that contribute to strengthening the sexual health
and well-being of people with HIV;
• reduce the possibility of new HIV infections and other sexually
transmitted infections.
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Why is positive
prevention important?
All new HIV infections come from people who already have HIV. Research tells
8
POSITIVE PREVENTION
us two important things in this regard: firstly, that the vast majority of us have
no desire to pass on HIV and that, even if we slip up, we still carry a standard
of caring for people and our communities. Secondly, we know that just over
one-quarter of people who are infected with HIV in Canada are unaware of their
HIV status.
Taking responsibility for preventing HIV transmission is not as simple as
knowing about safer sex, or not sharing needles. It involves thinking deeply
about how we make risk decisions and taking the step to know our HIV status
by testing.
Beyond knowing our own HIV status, being committed to preventing HIV
transmission involves a deep and personal understanding of why we might
Just over one-quarter
consider taking risks with our own and others’ health. We need to understand
of people who are
the value we place on sexual pleasure, the role that addictions play in our per-
infected with HIV in
sonal lives, the reasons we might be led to place ourselves or another person
in a vulnerable situation, our fears about rejection, our need to be accepted,
our insecurities about our attractiveness to others, and so forth. We also need
Canada are unaware of
their HIV status.
to look directly at what we truly value when we increase risk. This could be
about deep connection, heightened sexual charge or a sense of holding on to
a really important part of who we are.
If we are able to find ways to use this self-knowledge to lessen the risk to
our partners and ourselves, then we become part of the solution. In practice,
this may mean changing an inner decision of “I’m willing to take this risk” to
actually asking our partner, “What risks are you all right with taking?”
Principles of positive prevention
The following principles of poz prevention are a starting place for managing our
health and risk. They also call on us to respect our sexual partners. Strategies
for putting these principles into practice are also included.
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POSITIVE PREVENTION
Shared responsibility
It takes two for an HIV infection to move from one person to another. Shared
responsibility means that preventing HIV transmission is not solely up to the
HIV-positive person or the HIV-negative person. We do have a responsibility
to share decisions that can help prevent the virus moving from one of us
to another.
Behaviour change
Behaviour change is easier when we know why we want to change. The
Shared responsibility
biggest change in behaviour has to do with communication, particularly with
means that preventing
yourself (self-talk). A good time for self-talk is either before you find yourself in
HIV transmission is
not solely up to the
HIV-positive person or
the HIV-negative
person. We do have a
responsibility to share
decisions that may result
in the virus moving from
one of us to another.
a situation where risk may happen or after you have taken a risk and want to
make sense of it.
The self-talk might consist of visualizing a situation where you meet someone you want to have sex with and you talk to them about HIV and the risks
they are willing to take. Think about how you would introduce the topic.
Imagine the questions that the person might have and how you would react.
Imagine how you would react to different things that this person might say
about HIV and risk. In this way, you can practice and perfect the words you’ll
say and the things you’ll do when the opportunity arises.
Alternatively, you might try reviewing a situation where you took risks that
you didn’t want to and imagine what you could have done or said so that
things happened differently.
Taking care of your health and reducing harm
Reducing harm means making decisions to lessen some of the potential harms
from sex to yourself and others. Preventing HIV transmission is about developing
self-respect and confidence. If risky behaviour is the thing you want to change
and it is a challenge, you can always start with practising a change in another
behaviour that you care about and that is more manageable, perhaps something that is not even directly related to sex. For example, you might simply
make a plan to clean your apartment weekly or start going to an exercise class
at your local gym. Success with small changes begins to rewire our ability to
take charge.
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Disclosure
Telling another person that you are HIV-positive is a brave act. It is especially
tough if you believe it might result in rejection. However, the law requires people
with HIV to disclose their status before having sex that could pose a “significant
8
POSITIVE PREVENTION
risk” to their partners. This certainly includes unprotected anal and vaginal sex.
Disclosure may even be required in some cases of protected sex (see Chapter
21, Legal issues, for a discussion of this complicated topic).
Tips on disclosing your status
Here are some tips on the art of disclosing your status. There are more
in Chapter 6, Your emotional health and Chapter 7, Your sexual health.
• Decide on disclosure or safer sex before you get to the heat of
the moment.
• Know that you can handle rejection. Even though it can be painful and
upsetting, it is not the end of the world.
• Practice disclosure with people you trust.
• Go out with a friend. If you find yourself rejected after disclosing,
Telling another
person that you are
HIV-positive is a
brave act.
you can still talk it over with your friend.
• Be ready for a conversation with your prospective partner after
you disclose.
Some things to think about
Twenty-five years ago when AIDS first appeared, many people began to think
about and discuss their sexuality in ways they never had before. Since that
time, the ways in which we think about sex and how we have sex have
Preventing HIV
transmission is about
developing self-respect
and confidence.
changed greatly.
Desire for unprotected sex
Many people wish they could have unprotected sex more often. This is a
natural and normal desire. In the gay community, unprotected anal sex is often
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POSITIVE PREVENTION
Handling rejection after disclosure:
It’s not about me. It’s about you.
In order to get ourselves loved—or laid—we all risk the possibility of
rejection. But as people with HIV, we may feel we have a “special”
relationship to rejection. Some of us have been rejected by a potential
sexual partner after we have told this person that we are HIV-positive.
Though HIV-positive people definitely meet partners who accept our
status, don’t think of it as a big deal and love us for the amazing people
we are, many of us are afraid to take emotional risks because the
possibility of rejection scares us.
Here are some practical tips and affirmations to help you pick
yourself up, dust yourself off and keep looking for love if you disclose
and are rejected.
1. Know that you did the right thing even though it was difficult to
disclose your HIV status. It took courage to be honest and to put
yourself in a vulnerable position. Give yourself credit for that.
2. There are lots of happy, sexy HIV-positive people with partners who
are HIV-negative (or HIV-positive, for that matter!) out there. So this
person rejected you—it’s their loss! There are lots of people out there
who are going to see you for the great catch that you are. It will
happen in time. You just need to stay in the game.
3. There may be reasons for their rejection that can take the sting of it
away. Maybe they are carrying too much emotional baggage about
HIV around with them right now: a recent scare about their own HIV
status, a friend or lover who died of HIV in the past, a bad experience
with someone who wasn’t honest about their status.
4. Maybe they’re dealing with other stuff: a bad break-up that had nothing to do with HIV, depression, self-esteem issues, financial worries
or the loss of their job. None of this is about you; it’s about them.
5. There’s really not much you can do if this person has decided that
they don’t want to take the risk of having sex or pursuing a relationship
with someone who has HIV. It is their choice to make and though
you may not like it, you have to respect it.
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called barebacking. It is a controversial issue that has received a lot of attention.
Sex workers are sometimes offered additional payment to have unsafe sex with
their customers—creating a difficult dilemma. Some mixed-status heterosexual
couples choose to have unprotected sex so they can become pregnant.
8
POSITIVE PREVENTION
Serosorting
Often, the choice to have unprotected sex is combined with other strategies
that are meant to reduce risk. Some people choose sex partners of the same
HIV status—HIV-positive people with HIV-positive partners, HIV-negative with
HIV-negative—with the intent to avoid a new HIV infection. This is known
as serosorting.
Serosorting does not necessarily mean having unprotected sex. However,
for many people, the two go together. Serosorting allows two HIV-positive
people to have unprotected sex without infecting an HIV-negative person.
What is absolutely vital in serosorting is knowledge and communication. For
HIV-positive people, it is vital you get to know the other person’s HIV status; do
NOT assume your partner’s status. Many new HIV infections happen because
of misunderstandings and assumptions about the other person’s HIV status.
If you are not sure, ask.
Two HIV-positive people who decide to have unprotected sex must also
consider the risks of re-infection and other sexually transmitted infections,
including hepatitis C. See Chapter 7, Your sexual health, for a more detailed
discussion of these risks.
Life changes
A major stress in our lives—an addiction, a breakup, health problems, loss of a
job or friendship—can lead us to agree to do things we normally would not. If
you find this is happening to you, then it is time to seek help to understand the
feelings you may have about taking risks or the stress you are feeling. Talk to a
friend or go to an AIDS service organization or other mental health professional.
You are worth it.
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POSITIVE PREVENTION
Stimulants, recreational drugs and addictions
Alcohol and recreational drugs can be fun, but they can also affect our safer
sex decisions and the way we look after our own health. If you feel that partying
is not getting in the way of you maintaining your health, always take condoms
and lube with you when you go out. But if partying is affecting your ability to
make good sexual decisions and you find yourself having unprotected sex
without being in charge, get help from a counsellor at an AIDS service organization or from another mental health professional. See Chapter 4, Healthy living,
for more on drugs and harm reduction.
Preventive treatments
You may have heard about using anti-HIV drugs to prevent transmission. This
is a relatively new field of research and we are just beginning to learn what role
these drugs may play in HIV prevention.
Some studies appear to show that some people with HIV who maintain a
sustained undetectable viral load as a result of adhering to their anti-HIV drugs
may reduce the chances of transmitting HIV to partners when having unprotected sex. Not everyone agrees with this research and this research has not
been done on gay men. More importantly, studies have shown that even with
an undetectable viral load, it is possible to transmit HIV through unprotected
sex. For decision-making between individuals, lowering viral load is not a
completely reliable way to make sex safe.
Post-exposure prophylaxis (or PEP for short), means a temporary course
of anti-HIV drugs for an HIV-negative person, starting immediately after he or
she has been exposed to HIV. If you think you may have exposed your sexual
partner to HIV, you can take your partner to the emergency room of your local
hospital. PEP may be available there, although payment will probably be an
issue. PEP should be started within 72 hours after exposure to HIV.
Pre-exposure prophylaxis, or PrEP, is a similar idea, in which an HIV-negative person may take anti-HIV drugs before being exposed to HIV. The idea is
that this may reduce the chance of becoming infected. Currently there has not
been enough research to determine whether or not PrEP will work.
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Resources
Positive Prevention
Information and resources for people with HIV from the British Columbia
Persons with AIDS Society:
8
POSITIVE PREVENTION
(www.bcpwa.org/empower_yourself/positive_prevention)
Safer Sex for the HIV positive
Collection of positive prevention articles and resources:
(www.thebody.com/index/treat/prevpos.html)
Pozitively Healthy : a gay man’s guide to sex and health
Booklet on sexual health for gay men living with HIV from the Poz
Prevention Working Group of the Ontario Gay Men’s Sexual Health Alliance
Poz Prevention: knowledge and practice guidance for providing sexual health
services to gay men
Practical manual for service providers who work with gay men
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
NOTES
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NOTES
POSITIVE PREVENTION
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Monitoring
your health
9
This chapter is about keeping track of your health. First of all, we’ll
look at what you and your doctors should be looking for—the
most important aspects of your physical and mental health. Next,
we’ll look at how that’s done—the various tests and procedures
used to make sure you’re staying healthy and to spot problems
CONTENTS
• Why your health
is monitored
that need attention.
This includes the tests you may have heard about—CD4+
cell counts and viral load tests. While those are critical to HIV
• Monitoring your
HIV infection
care, there’s a lot more to monitoring your health. We’ll look at
how your CD4+ cell counts and viral load fit into the overall picture.
CD4+ cell counts and viral load are especially important for
deciding when to start anti-HIV treatment, and for monitoring your
response to that treatment. We’ll take a first look at those issues
here, and revisit them at greater length in Chapter 10 (Treatments).
About the author
• Other things to monitor
• How your health
is monitored
• Tests specific to women
• Tests specific to men
Paul MacPherson is an assistant professor of medicine
and a specialist in the division of infectious diseases at the
Ottawa Hospital General Campus. His clinical practice is
primarily dedicated to the treatment of patients with HIV
infection. He is also appointed to the department of biochemistry, microbiology and immunology at the University of Ottawa and is a staff scientist at
the Ottawa Health Research Institute. His primary research focus is on
understanding at the molecular level how HIV disables the immune system.
MANAGING YOUR HEALTH
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MONITORING
YOUR HEALTH
Why your health is monitored
You should monitor your health and overall state of well-being on a regular
basis. The saying, “an ounce of prevention is worth a pound of cure,” is particularly true if you are HIV-positive, whether or not you are on anti-HIV treatment.
Once inside your body, HIV slowly disables your immune system. While it
infects and lives in CD4+ cells, it also affects many other immune cells and prevents your body from mounting a normal immune response. Without an intact
immune system, you are not able to fight off other germs, including bacteria
Because each individual
progresses at his or her
and other viruses that can make you sick. Without treatment, the length of time
it takes HIV to destroy the immune system is different for different people, but
on average it requires about eight to 10 years (see Chapter 2, HIV... the basics).
own rate, and because
Some people, however, progress much more rapidly while others progress very
loss of immune function
slowly, if at all. Because each individual progresses at his or her own rate, and
can become evident in
different ways, it is
important that you see
your doctor regularly.
because loss of immune function can become evident in different ways, it is
important that you see your doctor regularly.
If you are not taking anti-HIV drugs, it is important that you and your doctor:
• monitor the effects of HIV on your immune system;
• watch for the appearance of life-threatening infections; and
• consider when to start therapy.
If you are taking anti-HIV drugs, you should still see your doctor regularly to:
• monitor for side effects;
• ensure that the drugs continue to work at preventing HIV from making
new copies of itself; and
• watch for any drug resistance that might develop.
Monitoring your HIV infection
In order to monitor how HIV is affecting you and your immune system, your
doctor will especially want to do blood tests to follow your CD4+ cell count and
your viral load, as well as your overall state of health.
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CD4+ cell count
One key component of your immune system is a type of white blood cell,
called a T-cell. T-cells help recognize and destroy germs that can harm you.
9
CD4+ cells (sometimes known as T4 cells) are a specific type of T-cell. CD4+
MONITORING
cells are crucial in co-ordinating your immune system and ensuring a number
YOUR HEALTH
of other immune cells function properly (see Chapter 2, HIV… the basics).
CD4+ cells are infected and killed by HIV. Initially, your body will be able to
replace the lost CD4+ cells. But as HIV continues to make copies of itself and
your overall immune system weakens, the CD4+ cell count will fall.
The CD4+ cell count, or simply CD4 count, is a measure of the strength of
your immune system. A normal CD4+ cell count is generally between 500 and
1,500 cells per cubic millimetre (mm3)—about the size of a pinhead—of blood.
As with other tests, some people’s CD4+ cell count may naturally fall above or
below these values. The CD4+ cell count also fluctuates depending on how
Your CD4+ cell count
active your immune system is when the test is taken. Even tests done just 12
will give you and your
hours apart from each other can give different values. If one CD4+ cell count
doctor a rough idea of
seems out of line with previous values, it may be worth repeating it. It is also a
good idea not to measure your CD4+ cell count if you are feeling unwell or
were recently vaccinated. Your immune response to the infection or vaccination
how strong your immune
system is.
may make your CD4+ cell count temporarily high or low.
Your CD4+ cell count will give you and your doctor a rough idea of how
strong your immune system is. Values above 500 cells/mm3 generally indicate
your immune system is strong enough to fight off most infections. Values
between 200 and 500 cells/mm3 raise some concern: they indicate that your
immune system is becoming weak, and that you are more vulnerable to infections. CD4+ cell counts below 200 cells/mm3 mean that your immune system
is very weak and that you are at risk of developing life-threatening infections
such as Pneumocystis pneumonia (PCP). If the CD4+ cell count drops to less
than 100 cells/mm3, there is a high chance that you will develop other severe
infections such as a vision-threatening virus infection known as cytomegalovirus
(CMV), or activation of mycobacterium avium complex (MAC) or the parasite
toxoplasma. For more information on these infections, see Chapter 12, HIVrelated infections and cancers.
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9
The CD4+ cell percentage shows what proportion of the total T-cells are
actually CD4+ cells. CD4+ cells usually make up between 35 and 50 per cent
(one third to a half) of your total T-cells. As the number of CD4+ cells declines,
MONITORING
they will make up less and less of the total T-cell population, and your CD4+
YOUR HEALTH
cell percentage will decline.
Anti-HIV treatment greatly reduces the ability of HIV to make copies of
itself. Once HIV is suppressed, it no longer attacks the cells of your immune
system, and your CD4+ cell count will begin to rise. How fast and how high the
CD4+ cell count increases varies from person to person and depends a great
Generally, as long as
deal on how advanced your HIV infection was before drugs were started.
the CD4+ cell count
Some people have a very modest increase in their CD4+ cell count; in others
rises or stays above
the CD4+ cell count returns to normal. Generally, as long as the CD4+ cell
3
200 cells/mm , you will
not be at high risk
of becoming ill.
count rises or stays above 200 cells/mm3, you will not be at high risk of
becoming ill. Your doctor will continue to monitor your CD4+ cell count to
ensure it remains within a safe margin.
Viral load
The viral load is a measure of the amount of HIV in your blood. The viral load
test measures the number of copies of HIV in a millilitre (mL)—about a teaspoon—of blood. In untreated individuals, it varies widely: some people have
Your doctor will use viral
viral loads of only a few hundred, while others may have viral loads greater than
load testing regularly to
100,000. Perhaps more than any other test, the viral load test may show signif-
monitor your response to
treatment. You should
icant changes over time in untreated people. With this test, it is especially
important not to focus on any one number, but to look at the trend over time.
Generally speaking, the higher the viral load, the faster HIV will disable the
see a significant reduction
immune system. For this reason, a high viral load may prompt your doctor to
in your viral load within
suggest beginning anti-HIV drugs sooner than if you have a low viral load.
Anti-HIV treatment reduces HIV’s ability to make new copies of itself. When
four to six weeks of
you start effective anti-HIV treatment, your viral load should begin to decline.
beginning anti-HIV drugs,
The goal of treatment is to maximally suppress HIV to the point that it can no
an indication that the
longer be detected using our current tests. The lower level of detection for HIV
drugs are effective.
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in the blood is 40 to 50 copies per mL, depending on which test is being used.
So, if your viral load is less than 50 copies/mL, it is undetectable. Keep in mind
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that undetectable does not mean there is no virus present. It simply means
there are fewer copies of HIV than can be measured by our current technology.
Your doctor will use viral load testing regularly to monitor your response to
9
treatment. You should see a significant reduction in your viral load within four
MONITORING
to six weeks of beginning anti-HIV drugs, an indication that the drugs are
YOUR HEALTH
effective. Once HIV is fully suppressed (that is, becomes undetectable) in your
blood, viral load tests should continue to be done on a regular basis to ensure
HIV remains suppressed.
Before you begin anti-
Resistance testing
HIV can become resistant to anti-HIV drugs. Drug-resistant strains of HIV can
be transmitted from person to person, and can be identified by resistance testing
(also called genotypic testing). Before you begin anti-HIV treatment, your doctor
will likely have already obtained a genotype of the HIV strain you were infected
with. The genotype will indicate which anti-HIV drugs the virus is sensitive to
and which ones it is resistant to. If your viral load does not reach undetectable
levels or if it rebounds after reaching undetectable levels, your doctor will likely
HIV treatment, your
doctor will likely have
already obtained a
genotype of the HIV
strain you were infected
do another genotype test and consider changing your drugs. Another type of
with. The genotype will
resistance testing, called phenotyping, is not widely available in Canada.
indicate which anti-HIV
drugs the virus is
Other things to monitor
Whether or not you are taking anti-HIV drugs, you should remain aware of your
sensitive to and which
ones it is resistant to.
overall state of health. Monitoring your health means more than monitoring the
effects of HIV.
General health
Keeping an eye on your overall health is important for everyone, regardless of
HIV status. It’s even more important for HIV-positive people, since HIV can
make you more vulnerable to conditions, both minor and major, that can affect
nearly any part of your body.
Strive to maintain a healthy lifestyle. Getting an appropriate amount of rest, eating a balanced diet and exercising regularly will help you to feel healthy and strong.
MANAGING YOUR HEALTH
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9
Sexual health
Sex is a natural and regular part of life for most people. It can reduce stress,
express intimacy and simply feel good. To maximize your pleasure, you should
MONITORING
take an active role in maintaining your sexual health. For those with HIV, there is
YOUR HEALTH
a greater risk of acquiring sexually transmitted infections and, if you get one,
the symptoms may be more severe. On the other hand, some sexually transmitted infections do not always cause symptoms right away. If you are sexually
active with different partners, you may want to be tested regularly for diseases
For people with HIV,
such as gonorrhea, chlamydia and syphilis (see Chapter 7, Your sexual health).
Using condoms greatly reduces the risk of transmitting HIV to your partner(s),
there is a greater risk
and will also protect you from sexually transmitted infections like gonorrhea and
of acquiring sexually
chlamydia. Keep in mind, though, that condoms will not necessarily protect you
transmitted infections.
from all sexually transmitted infections. Syphilis, herpes and genital warts can all
be passed on even if you always wear a condom.
Mental health
Depression and other mental health problems are common, and often go
unrecognized and untreated. Everyone feels down from time to time, but if you
feel low or hopeless for an extended period of time, be sure to discuss this
with your doctor. Depression, as well as stress and anxiety, are too frequently
ignored and will negatively impact your health and sense of well-being (see
Chapter 6, Your emotional health).
Other mental health problems can sometimes be caused by the effects of
HIV on the brain, or by certain life-threatening infections (see Chapter 12, HIVrelated infections and cancers). These problems are now very rare, since they
Make sure that mental
are preventable by proper care; they are usually only seen in people with very
health monitoring is
advanced HIV disease. Early symptoms of dementia caused by HIV or other
part of your regular
infections can include difficulty thinking, remembering or concentrating, as well
check-ups.
as problems with co-ordination and body movement. Other problems, such as
depression, can cause similar symptoms. You should immediately let your
doctor know if you notice anything unusual.
Make sure that mental health monitoring is part of your regular check-ups.
Try to be aware of your mental state, your coping skills and how you deal with
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stress. Difficulty coping can lead to excessive alcohol and drug use, both of
which can further compromise your health.
9
Infections, cancer and other complications
MONITORING
As HIV disables the immune system, people are more likely to get infections
YOUR HEALTH
that a healthy immune system would fight off. For example, the fungal infection
PCP causes fever and breathing difficulties and generally occurs in people with
a CD4+ cell count less than 200 cells/mm3. As the CD4+ cell count drops further, the parasite toxoplasma may reactivate in the brain, or the virus CMV may
flare up in the eye causing blindness. In addition, certain cancers such as lymphoma are more common in people with HIV with lower CD4+ cell counts.
These infections are described in more detail in Chapter 12, HIV-related infections
and cancers. They can usually be avoided by keeping your CD4+ cell count
high enough.
An immune system that has been disabled may also malfunction and attack
the body by mistake: this is known as autoimmune disease. One relatively
common autoimmune disease in HIV-positive people is called ITP, or immune
thrombocytopenia purpura. This occurs when your immune system mistakenly
destroys your platelets. Low platelets can put you at significant risk of bleeding.
You do not have to have a low CD4+ cell count to develop an autoimmune
disease. It is therefore important that in monitoring your HIV infection, you keep
track of more than just your CD4+ cell count and viral load. You should see
your doctor regularly and watch for any complications that may arise from HIV.
Cardiovascular (heart) health
Monitor your cholesterol
and blood pressure
with your doctor and
Heart disease can creep up on you slowly, but once present it can be difficult
consider treatment if
if not impossible to reverse. Monitor your cholesterol and blood pressure with
either is elevated.
your doctor and consider treatment if either is elevated.
Maintain good heart health by eating a low-fat diet and getting regular
exercise. Smoking is a major contributor to heart disease. If you smoke,
consider a smoking cessation program.
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Diabetes
Diabetes has often been referred to as “the silent killer,” as people may develop
high blood sugar without being aware of it. You should have your blood sugar
MONITORING
checked regularly, especially as you get older, if diabetes runs in your family
YOUR HEALTH
or if you are on anti-HIV treatment. The blood sugar test should be done in the
morning before you eat anything. Your doctor may also request a blood test
called a hemoglobin A1C, which provides a rough idea of your blood sugar
levels over the past couple of months.
You should consider
Hepatitis A, B and C
vaccination for hepatitis
Hepatitis B and C are viral infections that can remain in your liver for many
A and hepatitis B if you
years and cause permanent damage, including cirrhosis and liver cancer.
travel or have multiple
sexual partners.
Hepatitis A, another viral infection of the liver, is usually cleared by your immune
system and only very rarely causes permanent damage. However, it can make
you quite sick for a few weeks. If you already have hepatitis B or C, getting
hepatitis A on top of that can be serious. Blood tests can check whether you
have any of these infections (see Chapter 12, HIV-related infections and cancers).
If you do not have hepatitis B, consider getting vaccinated to protect
against getting it in the future. You should especially consider vaccination for
hepatitis A and hepatitis B if you travel or have multiple sexual partners.
Unfortunately, there is no vaccine for hepatitis C. If you have tested positive
for hepatitis B or C, you should get a referral to a hepatitis specialist.
How your health is monitored
Symptoms
Your doctor will monitor your health in a number of ways. First, he or she will
ask how you have been feeling lately, whether you have been having any
symptoms and, if so, when they started. These could include things like fevers
or night sweats, diarrhea, headaches or losing weight unexpectedly.
Your doctor will likely ask if you have noticed any changes or problems
yourself, then follow up with some specific questions about things you may
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not have mentioned. Be sure to take your time and answer honestly. Not every
ache and pain is abnormal, but let your doctor know about anything persistent,
that seems out of the ordinary, or is a definite change from the way you used
9
to feel. You can make a note of any changes to your health in your personal
MONITORING
health record (see page 317) so you don’t forget to mention things to your doctor.
YOUR HEALTH
Physical examination
Next, your doctor will examine you. This may or may not occur with every visit.
If you are feeling well and have no symptoms, your doctor may not examine
you or may only look for a few specific things. Physical exams may be more
Let your doctor
frequent if you have just been diagnosed or if you mention that you have
know about anything
noticed any changes. For an especially thorough exam, you may be asked to
persistent, that seems
undress and wear a hospital gown. In any case, your doctor should describe
any concerns and what action he or she will take to follow up.
The physical exam generally begins with your vital signs: your pulse, blood
pressure, breathing rate and temperature. Next, your doctor will likely look in
your ears, eyes and mouth for any signs of infection, and feel the lymph nodes
in your neck, armpits and groin. Your doctor will listen to your heart by placing
out of the ordinary,
or is a definite change
from the way you
used to feel.
a stethoscope on your chest and then listen to your lungs by placing the
stethoscope at various places on your back as you breathe in and out. To
examine your abdominal organs, your doctor will place his or her hands on
your stomach and press, lightly at first and then more firmly. The edges of your
Physical exams may
liver and spleen may be felt with the fingers or identified by tapping on your
be more frequent if
stomach just below the ribs. Your nervous system may be examined by check-
you have just been
ing your reflexes and strength as well as your balance. Finally, your doctor may
diagnosed or if you
have a look at your skin for any rashes or new lesions.
Depending on whether you have been sexually active and whether you
mention that you have
have symptoms, your doctor may also examine your genitals. For women, this
noticed any changes.
means having a look at the outer labia (the outer lips of the vagina) for any
sores or lesions. Then your doctor will insert a speculum to see the inside of
the vagina and the cervix. For men, your doctor will examine the end of the
penis for any discharge, and the shaft of the penis for sores or lesions. Next,
your doctor will gently squeeze the scrotum just above the testicles to see if
MANAGING YOUR HEALTH
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MONITORING
there are any signs of tenderness or inflammation. The testicles are also felt to
be sure there are no lumps or bumps.
For more information on tests specific to men and women, see pages 119
and 120.
YOUR HEALTH
Blood tests
Blood is made up of many different kinds of cells suspended in a clear fluid
called plasma. Blood transports oxygen from your lungs, nutrients from your
digestive tract and hormones from your glands to cells and tissues throughout
By looking at the levels
of the substances that
are carried in the blood,
blood tests can tell you
the body. It transfers waste products to the kidneys and liver for elimination.
Your blood also carries important proteins to allow for clotting, and antibodies
that help fight off infections.
By looking at the levels of the substances that are carried in the blood,
blood tests can tell you and your doctor a lot about how well your body’s
and your doctor a lot
organ systems are working. They may also help confirm a diagnosis that was
about how well your
suspected based on symptoms and the physical exam.
body’s organ systems
are working.
If you are interested, ask your doctor to explain your test results in a way
that you can understand. Do not get too caught up in the numbers, but instead
keep some of the following points in mind:
• Test results are compared to a normal range, which is a range of values
within which the majority of healthy people would fall. Some people
naturally have test results above or below the normal range, so the
important thing is to identify what is normal for you.
• Keep an eye out for trends. Test results will normally vary from time to
time but should generally stay within the normal range. Consistently rising
or falling test results suggest that something is going on.
• Test results can vary from one lab to another. It is generally a good idea
to have your blood work done at the same lab every time so changes in
results can be more easily identified.
• Test results can be wrong. Try not to let a single abnormal, unexpected
result worry you too much. Instead, consider repeating the test before
making significant treatment decisions.
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Common blood tests
Below is a list of the most common blood tests. For all of these tests, a
small amount of blood (generally 5 to 10 mL—a couple of teaspoons) is
taken from a vein in your arm and sent to the lab.
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MONITORING
YOUR HEALTH
Complete blood count (CBC) The CBC is one of the most common
tests, and can alert you and your doctor to a number of health problems. Results outside the normal range can suggest the presence of
infections, poor nutrition or specific diseases of the blood. Because
blood cells are made in your bone marrow, abnormal results may also
suggest problems with the marrow, such as infection or drug side
effects. The CBC is actually made up of several different tests:
• White blood cell count This test measures the total number of
white blood cells (your immune system cells) in a sample of your
blood. A high number may suggest the presence of an infection,
while a low number could suggest problems with your bone marrow.
• Differential There are several different types of white blood cells.
These include cells called neutrophils, lymphocytes and monocytes,
each of which has different functions. The differential tells your doctor
how many of each cell type are present in your blood. Increases or
decreases in the numbers can suggest different problems.
• Red blood cell count Red blood cells, which give blood its red
colour, contain iron and transport oxygen from your lungs to other
tissues. They also transport carbon dioxide from the tissues back
to the lungs where you breathe it out. The red blood count tells you
how many red blood cells are present in a sample of your blood.
• Hemoglobin Red blood cells contain hemoglobin, a molecule
that binds iron in your red blood cells to allow for the transport of
oxygen. Even if you have enough red blood cells, you may not
have enough hemoglobin. Low hemoglobin is called anemia and
can leave you feeling tired, short of breath or pale in appearance.
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Common blood tests
• Platelet count Platelets help your blood to clot. When the
platelet count is very low, you may bruise easily, bleed for longer
than usual when cut or injured, experience frequent bleeding of
the gums or develop a skin rash.
Urea and creatinine Urea and creatinine are normal waste products
formed by the chemical processes in cells. They are filtered out of the
blood by the kidneys and excreted into the urine. A build-up of urea and
creatinine in the blood suggest that the kidneys may not be functioning
normally.
Electrolytes Electrolytes, including sodium, potassium, chloride and
calcium, are dissolved in your blood and must remain in balance.
Severe vomiting or diarrhea can deplete electrolytes from your body
making you feel weak or confused.
Liver function tests Liver function tests include a number of different
tests. Together, these will indicate the overall health of your liver.
• Transaminases The transaminases (aspartate aminotransferase, or AST, and alanine aminotransferase, or ALT) are
enzymes contained within the cells of the liver. When the liver is
damaged by alcohol, drugs or infections like hepatitis B or hepatitis C, liver cells die and release these enzymes into the blood.
Raised levels of AST and ALT in the blood indicate the presence
of liver inflammation.
• ALP (alkaline phosphatase) and GGT (gamma-glutamyl
transpeptidase) A branching system of ducts collects a substance called bile from your liver and channels it to your gall
bladder. Raised levels of ALP and GGT in the blood can indicate
that these bile ducts are injured.
• Bilirubin When red blood cells die, a chemical called bilirubin is
produced. Normally, it is filtered from the blood by the liver and
excreted in the bile. If bilirubin builds up in the blood, it can make
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Common blood tests
your eyes and skin look yellow (this is called jaundice). Things that
can cause the bilirubin to rise in the blood include increased red
blood cell death, liver damage or a block in the bile ducts causing
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MONITORING
YOUR HEALTH
a backup of bile. Some drugs, such as the anti-HIV drug
atazanavir (Rayataz), can also increase the level of bilirubin by
slowing down the rate that the liver removes it from the blood.
• Albumin Albumin is a protein that is made in the liver and circulates in the blood. Low levels of albumin can indicate severe
malnutrition or poor liver function.
• INR The INR (for international normalized ratio) is a measure of
how quickly your blood can clot. Clotting proteins are made by
your liver and so a slow clotting rate can indicate decreased protein synthesis by your liver.
Blood sugar The sugar (glucose) in your blood is the major source of
energy for your cells. Your body normally keeps blood glucose levels
within a narrow range. When the glucose in your blood is abnormally
high, which occurs in diabetes, it can cause damage to cells and tissues.
High blood sugar levels are increasingly being seen in people on antiHIV drugs and may require a change of therapy, dietary changes or
additional medications. Your blood glucose levels are best measured
first thing in the morning before you have something to eat. Another
way to check for diabetes is to measure the hemoglobin A1C, which
provides a rough idea of the blood sugars over the past few months.
Lipids Cholesterol and triglycerides are two major kinds of fat found in
the body. Elevated LDL (low-density lipoprotein or “bad”) cholesterol is
associated with heart disease and hardening of the arteries. HDL (highdensity lipoprotein or “good”) cholesterol helps to clear “bad” cholesterol
from the bloodstream; higher HDL levels are good for heart health.
• Cholesterol The cholesterol in your blood comes from your diet
and from what is manufactured by your own body. High levels of
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Common blood tests
cholesterol, especially the “bad” LDL cholesterol, are known to
lead to heart disease. Anti-HIV drugs can also raise your cholesterol
levels. If your cholesterol is high, your doctor may encourage you
to exercise and adopt a low-fat diet in an attempt to bring it
down. If this fails, you may need to consider taking cholesterollowering drugs.
• Triglycerides Triglycerides are another form of fat found in your
blood. While you need some, too much is a bad thing. Anti-HIV
drugs can increase your triglycerides as well, so levels should be
monitored when people are on therapy.
Other tests
Urinalysis Testing your urine is another way to measure how well your kidneys
are functioning. Your kidneys filter your blood, retaining important nutrients and
excreting waste products into the urine. A routine urinalysis tests for things that
should not be present in the urine, such as blood, protein, glucose (sugar) and
white blood cells.
Culture If your doctor suspects you have an infection, a sample of your blood,
stool, urine, phlegm (sputum), pus, spinal fluid or other tissue may be sent to
the lab for culture. Technicians try to grow germs from your samples. This
process can take several days. If there are bacteria or other germs present in
the sample, they can be identified. Some germs grow very slowly and may
require several weeks to be identified.
Serology Some germs cannot be grown in culture. However, your doctor can
check your blood to see if you have antibodies to these germs.
Biopsy Having a biopsy involves removing a small sample of your tissue (such
as skin, lymph node or liver tissue) and examining it under the microscope.
A specialized doctor called a pathologist will examine these tissue samples for
abnormalities, germs or cancer.
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Scopes Fibre optics has allowed doctors to create scopes, long flexible tubes
that can be used to see inside various parts of your body. An endoscope,
inserted through the mouth, can be used to examine the stomach. A colono-
9
scope, inserted through the anus, can be used to examine the large intestine.
MONITORING
A bronchoscope, inserted through the mouth and down the windpipe, can be
YOUR HEALTH
used to look inside the lungs.
X-rays X-rays also allow your doctor to view inside your body. A chest X-ray
can reveal abnormal tissue densities in the lungs caused by pneumonia or cancer.
CT scan (CAT scan) and MRI These scanning machines create images of
the inside of your body. A specialized doctor called a radiologist will examine
these images to look for abnormalities in the organs and tissues.
Bone scan Thinning of the bones (osteopenia and osteoporosis), commonly
seen in older people, especially women past menopause, has been found in
some people with HIV, especially those who have been HIV-positive for a long
time. Bone scans can be used to measure bone density, predict the risk of
fractures and gauge whether any additional treatment is required. Such scans
are not yet standard practice for people with HIV, although some people now
argue that they should be.
Women with HIV are
at a higher risk of
developing cervical
Tests specific to women
The Pap test (or smear) is a screening test that looks for abnormal cell growth
in the cervix (the entrance to the uterus) often caused by the human papillomavirus (HPV). Some abnormalities are mild and will go away on their own.
Other abnormalities may suggest a more significant problem and the potential
abnormalities and
cervical cancer, and
should therefore have an
annual Pap test.
to develop cervical cancer (see Chapter 15, Women and HIV).
Women with HIV are at a higher risk of developing cervical abnormalities
and cervical cancer, and should therefore have an annual Pap test. If any
abnormalities are found, your doctor may do follow-up Pap tests more frequently.
To do a Pap test, your doctor will use a speculum to open the vagina and
examine the cervix. A brush is used to collect cells from the surface of the
cervix; these cells are then sent to the lab for examination.
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There is also evidence that anal cancer, which like cervical cancer is caused
by HPV, is also more common among women with HIV. Ways to check for anal
cancer include having your doctor use a finger to feel for abnormalities, having
MONITORING
an anal Pap test or having a scope inserted in the anus to look for cancerous
YOUR HEALTH
lesions. There are, however, no standard recommendations as to best practice.
Tests for anal dysplasia (abnormal cells in the anus) are not routinely available
throughout Canada; however, your doctor may know if a research project
involving anal Pap tests is recruiting in your area.
There is no evidence to suggest that breast cancer is any more common in
Men with HIV are
women with HIV than in HIV-negative women. It is generally recommended that
at increased risk of
all women over the age of 50 have an annual mammogram.
developing anal cancer.
Tests specific to men
The prostate lies just in front of the rectum and below the bladder (see Chapter
7, Your sexual health). Semen from the testicles and urine from the bladder
both pass through the prostate on their way out of the body. As men age, the
prostate tends to enlarge and this can make peeing difficult. Prostate cancer can
also develop, again more commonly in older men. Finally, sexually transmitted
infections that usually appear in the penis can travel up to and infect the
prostate, causing pain and discomfort. With this in mind, your doctor may
choose to examine your prostate. To do so, he or she will insert a gloved finger
with some lubricant into your anus and feel the prostate. Your doctor will assess
the size of the prostate and feel for any tenderness or bumps.
Men with HIV are at increased risk of developing anal cancer. Anal cancer in
men has been associated with the human papillomavirus (HPV). Ways to check
for anal cancer include having your doctor use a finger to feel for abnormalities,
having an anal Pap test or having a scope inserted in the anus to look for cancerous lesions. There are, however, no standard recommendations as to best
practice. Tests for anal dysplasia (abnormal cells in the anus) are not routinely
available throughout Canada; however, your doctor may know if a research
project involving anal Pap tests is recruiting in your area.
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Resources
HIV Viral Load Testing
Brochure of frequently asked questions and answers about viral load tests
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MONITORING
for people with HIV
Plain and Simple Factsheets on Monitoring Tests
YOUR HEALTH
Available in multiple languages
In-Depth Factsheets on Monitoring Tests
Comprehensive information for people living with HIV and their
care providers
The Positive Side
Health and wellness magazine contains articles about health monitoring,
such as:
• Resistance assistance
• HIV, sex and viral load
• Me and my liver
Look under Tests in the e-zine index (www.positiveside.ca)
These and many other relevant resources can be accessed on CATIE’s website
(www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca) or by
calling CATIE at 1-800-263-1638.
NOTES
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10
Treatments
This chapter provides an overview of all the main
questions about HIV treatment—when to start, what to
use and how to make it work.
Since treatment information can be complex and
changes quickly, we have written this chapter as a
general introduction to the major treatment issues that
you may face as a person living with HIV. However, as
you begin to make treatment decisions, you may want
more detailed and current information than this chapter
provides. At the end of the chapter, you can find further
resources by CATIE and others that provide more indepth information on the treatment topics covered here.
CONTENTS
• Treatment decisions
• Before you start
• When to start?
• Anti-HIV drugs
• Choosing treatment
• Starting treatment
• Making it work
About the author
Derek Thaczuk has worked and volunteered within
the HIV community since his own diagnosis in
1992. He has provided practical support and home
care, co-chaired the Ontario HIV Treatment Network,
• Changing treatment
• Taking breaks and
stopping treatment
and served as treatment resources co-ordinator at the Toronto People with
AIDS Foundation. Derek currently works as a freelance writer and editor
for CATIE and other organizations to bring plain-language, understandable
health and treatment information to people who are living with HIV.
MANAGING YOUR HEALTH
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Managing
your health
CHAPTER
UPDATE 2013
10
HIV treatment has evolved since Managing your
health was first published. This text, produced in
2013, provides an updated perspective on some
key issues to consider when deciding to start HIV
treatment. As always, make sure you have the most
up-to-date information on HIV treatment—visit
www.catie.ca or call us at 1.800.263.1638—and
discuss these issues carefully with your doctor.
Starting HIV treatment
Most people with HIV will start HIV treatment at some
point, and doctors nowadays often start talking
about treatment soon after diagnosis. This does not
mean that you need to start treatment right away,
though some people do need to start treatment
soon after diagnosis. The more time you have before
starting treatment, the better informed and prepared
you can be. With some preparation you can make
the right choice for you and make sure you have the
best chance for treatment success.
Your own health is the first factor to consider
when thinking about when to start treatment. You
want to start before you get sick. There is also
growing evidence that starting treatment earlier can
prevent some of the more subtle, long-term effects of
untreated HIV disease. A second reason to consider
starting is protecting others. Being on HIV treatment
can reduce the risk of HIV passing to others during
sex, and so some people also consider taking
treatment to reduce the risk of transmission.
Being ready to take treatment is also important
in deciding when to start. Not being ready makes
it harder to stick to treatment and have it succeed.
Getting ready includes understanding the benefits
and risks of treatment and coming to a decision. It
also includes preparing for the practicalities of taking
pills every day.
Starting for your own health
The decision to start is often linked to your CD4
count. Over time, HIV infection damages your
immune system, which causes a drop in CD4
counts. For many people this drop is gradual, and
they have time to prepare to start treatment while
they monitor their health. A CD4 count above 500 is
similar to that seen in people without HIV.
Experts have not yet determined at what CD4
count it is best to start HIV treatment, but they do
agree that by the time your CD4 count has reached
350, you should be on treatment. With any CD4
count below this number, your health is increasingly
jeopardized and your risk of getting sick or dying
over the long term is higher.
If your CD4 count is 200 or below, your immune
system is becoming seriously damaged and you are
at immediate danger of life-threatening infections.
HIV treatment is needed right away to bring the
virus under control and allow your immune system
to rebuild itself to a state where life-threatening
infections are no longer a risk. There is little time to
prepare to start treatment.
There are other specific situations in which
treatment is recommended, for example, when
someone is older than 55 years or has specific health
conditions, including hepatitis B or C co-infection,
declining kidney health or heart disease. Doctors
also recommend treatment during pregnancy (and
starting before getting pregnant if possible) because
in Canada effective treatment and care reduces the
chance of having an HIV-positive baby to less than
two percent.
While the benefits of HIV treatment are clear—
effective treatment brings the virus under control and
allows the immune system to partially rebuild itself—it
is also important to note that the effects of being on
treatment for many decades are still not known.
Starting for the health of others
We are learning that being on HIV treatment reduces,
but does not eliminate, the risk of passing on HIV
during sex. This is good news, and researchers
are working to understand the details around this
complicated issue. There are many factors that
determine the risk of transmission during sex—being
on treatment is only one of them. HIV treatment can
be part of a plan to reduce the risk of passing on HIV,
along with other strategies such as condoms.
People in certain situations, such as
serodiscordant relationships (in which one partner is
HIV positive and the other is HIV negative), may think
about starting treatment as part of a plan to help
reduce the risk of passing on HIV. Several treatment
guidelines support this position. However, the
decision to start treatment rests with you, the person
living with HIV. You need to be ready to start.
An insert of CATIE’s Managing your health: a guide for people living with HIV, available at www.catie.ca or 1.800.263.1638.
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TREATMENTS
Treatment decisions:
the pros and cons
Having HIV doesn’t necessarily mean you will need to go on anti-HIV treatment,
known as highly active antiretroviral therapy (HAART)—at least, not right away.
But, sooner or later, most people with HIV do have to go on treatment. The
best time to start varies. Since HAART can’t cure HIV infection, starting treatment
involves a trade-off: when do the benefits of going on treatment outweigh the
benefits of staying off? The benefits of successful treatment include:
Sooner or later, most
people with HIV do have
to go on treatment.
• Controlling the virus: HAART reduces HIV’s ability to make copies of
itself (see page 131–132). It forces the virus down to extremely low levels
and partly protects the body from the ongoing effects of infection and
immune system activation.
• Immune system restoration: people on HAART usually see significant
increases in their CD4+ cell counts. This means a stronger immune
system that’s better able to fight off infections (see Chapter 9, Monitoring
your health).
• Slowing or reversing disease progression: as the immune system
strengthens, the risk of life-threatening infections drops, and many of the
other, less serious symptoms of HIV infection diminish or disappear (see
Chapter 12, HIV-related infections and cancers).
If that all seems a bit abstract, let’s be blunt. Left untreated, HIV can kill
you. Treatment can save your life. We often tiptoe around that frightening fact,
but sometimes it’s best to look it in the face.
Naturally, when making decisions about treatment, the benefits, or pros
have to be weighed against the potential problems, or cons. These include:
• side effects and toxicities, both short term and long term;
• the difficulty of adherence: sticking to a drug schedule for the rest of
your life.
An important question for people with HIV is this: when should you start treatment so that you have good health and long-term quality of life? There is no
single answer—but that’s a far cry from saying nobody knows. The experience
of hundreds of thousands of HIV-positive people has been carefully evaluated.
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This has given us guidelines to help guide treatment decisions. These guidelines
provide answers to many questions, while allowing for more give and take in
other areas. They also change as our knowledge grows.
In this chapter, we will walk you through the biggest questions of anti-HIV
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TREATMENTS
therapy—the when, what and how of treatment. Since treatment changes
rapidly, with new drugs and new information constantly becoming available, this
chapter is only meant as a starting point. Treatment decisions will always have
to be made with your doctor and healthcare team, using the best and most
up-to-date information.
Treatment decisions will
always have to be made
Where do treatment guidelines come from?
Groups of experts from around the world meet regularly to agree on
recommendations for the use of HIV treatments. The treatment guidelines are long, comprehensive documents that incorporate evidence
from hundreds of studies. They include the most up-to-date answers
with your doctor and
healthcare team, using
the best and most
up-to-date information.
to treatment questions like when to start, what to take and when to
switch. If you have Internet access, you can review the most recent HIV
treatment guidelines at these websites:
• www.aidsinfo.nih.gov (U.S. Department of Health and Human
Services—DHHS). Guidelines for the use of antiretroviral agents in
HIV-1-infected adults and adolescents.
• www.cfenet.ubc.ca (British Columbia Centre for Excellence in
HIV/AIDS). Therapeutic guidelines: Antiretroviral therapy for HIV-1infected adults.
• www.bhiva.org (British HIV Association). Treatment of HIV-1 infected
adults with antiretroviral therapy.
• www.eacs.eu (The European AIDS Clinical Society). Guidelines for the
clinical management and treatment of HIV-infected adults in Europe.
• www.msss.gouv.qc.ca/sujets/prob_sante/itss/index.php?aid=132
(Le ministère de la Santé et des Services sociaux du Québec)
La thérapie antirétrovirale pour les adultes infectés par le VIH
– Guide pour les professionnels de la santé du Québec
(available in French only).
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Before you start
There are many things to consider before deciding to start HIV treatment. Once
you start HAART, you will be taking it for a very long time, probably the rest of
your life. Spending the time to think some things through before you start can
better your chances of success.
First of all, assess your overall health. Have you had any HIV-related illnesses,
such as Pneumocystis pneumonia (see Chapter 12, HIV-related infections and
cancers)? Have you had infections that keep coming back? Have you had
Once you start HAART,
ongoing symptoms like chronic fatigue, weight loss, skin problems or diarrhea?
If any of these are true, you may not be able to wait—these problems could
you will be taking it
signal a need to get on treatment right away. See When to start on page 130.
for a very long time,
Health conditions that are not related to HIV can influence your treatment
probably the rest of your
decisions, leading you to decide to start treatment earlier than you otherwise
would have, or to postpone treatment. For example, if you are pregnant, you
life. Spending the time to
may need to start treatment to reduce the chance your baby will have HIV. If
think some things
you’re depressed or using recreational drugs or alcohol a lot, you might have
trouble sticking to a strict medication schedule. In this case, it may be better for
through before you start
your health to postpone HIV treatment until you have your mental health and/or
can better your chances
substance use issues cleared up. Everyone with HIV should have a thorough,
of success.
head-to-toe checkup and medical history review to catch everything that might
be relevant.
Keep track of your CD4+ cell count and your viral load (see Chapter 9,
Monitoring your health). Unless your CD4+ cell count is already extremely low,
it’s better to make decisions based on trends rather than the results of a single
test. Have your CD4+ cell counts been falling? Is your viral load high or has it
recently increased significantly? If so, you might need treatment sooner rather
than later.
Consider how you feel about anti-HIV drugs. Some people have strong
feelings of scepticism, fear or distaste about taking them. They may feel that
taking anti-HIV drugs every day is a constant reminder of living with HIV. It’s
important to discuss such feelings with your doctor and work through them.
If you’re looking at each pill thinking, “I don’t want to take this,” that’s a difficult
emotional situation to be living with every day—and a set-up for poor adherence
and treatment failure.
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Think about the practical impact that treatment could have on your life.
Consider when and where you might have to take your drugs, such as on
vacation, at work, on the street, across the border or out socializing. If there
are going to be any issues, it’s better to think them through beforehand.
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TREATMENTS
You’ll definitely want to consider possible side effects. Not everyone will
have significant side effects; for some they may be short-lived, mild or barely
noticeable. However, for many others, side effects may be much more severe
(see Chapter 11, Side effects and symptoms).
Nobody wants to live with side effects but, realistically, they may be
something you have to deal with. Decide where you’re willing to draw the line.
Try to learn as much as
Remembering that HIV endangers your life, what are you willing to put up with
you can about side
in exchange for that? Side effects vary with specific treatments, so this may
mean some practical trade-offs: would you rather risk diarrhea or sleeping
poorly? Higher cholesterol or visibly losing fat? With luck, you may not
encounter any of these things, but it’s important for you to know what side
effects and how to cope
with them before making
treatment choices.
effects you may have and to prepare yourself, emotionally and practically, to
deal with them.
Try to learn as much as you can about side effects and how to cope with
them before making treatment choices. Chapter 11 (Side effects and symptoms)
explains many ways to help prevent or lessen side effects. By considering
these issues before starting treatment, you will give yourself the best chance
of not just living longer with HIV, but living well.
Treatment-related definitions
• Side effects refers to an unintended reaction to a drug.
• A drug interaction occurs when two or more drugs increase or
decrease each others’ levels in your bloodstream. This may result in
side effects, or in the drug becoming ineffective.
• Drug toxicity happens when the level of drug in your bloodstream is
too high, which may also result in unwanted side effects.
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When to start?
Deciding when to start drug treatment is often one of the toughest choices a
person with HIV has to make. This decision means choosing the best margin
of safety: at what point does your HIV infection pose more risk than treatment
does? The answer to that is based on:
• your medical health history (that is, how long you’ve been infected,
your symptoms, co-infections and illnesses);
• your CD4+ cell count;
Deciding when to start
drug treatment is often
one of the toughest
choices a person with
HIV has to make.
• your HIV viral load;
• whether you are pregnant or thinking about pregnancy;
• the emerging understanding of the early and ongoing impact of HIV on
our body.
Treatment should definitely be started if:
• You have had serious symptoms or illness (symptomatic infection) related to HIV infection, regardless of your CD4+ cell count or anything else,
see Chapter 12 (HIV-related infections and cancers). Even if you’ve
recovered, you may be at immediate risk of getting seriously sick again
without treatment.
• Your CD4+ cell counts are very low. (As we learn more, guidelines can
Even during the phase of
change on how low CD4+ cell counts can safely fall before starting
HIV disease that we call
treatment is recommended. Make sure you consult the most up-to-
asymptomatic, HIV is
creating an ongoing
process of inflammation
date information.)
• You are pregnant, to prevent transmitting HIV to your baby. This is
regardless of your CD+ cell count or your viral load. Usually once you
start anti-HIV drugs, you continue for the rest of your life. In pregnancy,
women with HIV may use anti-HIV drugs just during their pregnancy and
in our bodies, particularly
then stop after the baby is born (see Chapter 15, HIV and women).
in the gut, brain and
Getting on treatment immediately will let your immune system rebuild itself until
heart, which has a
negative effect on
our health.
you’re no longer in immediate danger of infections.
If you have not had any HIV-related symptoms (that is, you are asymptomatic), your viral load is low, your CD4+ cell counts are high and your overall
health is good, you and your doctor may decide to postpone starting treatment.
Your own readiness to start treatment will be crucial as well.
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For people who have not experienced serious symptoms or illnesses
related to HIV and who have a relatively high CD4+ cell count, expert opinion
on the best time to start treatment has swung back and forth. Ongoing studies
keep tracking which treatment choices (starting earlier or starting later) lead to
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TREATMENTS
the best long-term outcomes. This means weighing the long-term effects of
treatment against the effects of having HIV for a long time—something that
is not always easy to analyze. As research reveals more about HIV, we are
coming to understand that even during the phase of HIV disease that we call
asymptomatic, HIV is creating an ongoing process of inflammation in our
bodies, particularly in the gut, brain and heart, which has a negative effect on
When HIV infects a cell
in your body, it takes
our health.
It’s important to get the most up-to-date information, and to discuss the
issue of when to start treatment carefully with your doctor. Delaying treatment
control of that cell.
may call for more frequent testing of viral load and CD4+ cell counts to watch
for emerging trends.
Anti-HIV drugs:
the building blocks of treatment
Because HIV is a type of virus called a retrovirus, anti-HIV drugs are also called
HIV then forces the cell
to make many more
antiretroviral drugs or just antiretrovirals. In order to explain how anti-HIV drugs
copies of the virus. Anti-
work, we need to first tell you some information about HIV. When HIV infects a
HIV drugs are designed
cell in your body, it takes control of that cell (see next page). HIV then forces the
to interfere with different
cell to make many more copies of the virus. This replication of HIV—called the
HIV life cycle—is a step-by-step process, like an assembly line in a factory. Anti-
steps in the replication
HIV drugs are designed to interfere with different steps in that replication process.
process. There are four
The HIV life cycle and classes of anti-HIV drugs
The viral life cycle is the process by which HIV makes copies of itself. There are
main stages in the
viral life cycle.
four main stages in the viral life cycle:
1. HIV enters a cell;
2. HIV takes control of the cell;
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3. HIV becomes part of the infected cell;
4. HIV tricks the infected cell into making copies of itself.
There are several different “classes” (or groups) of anti-HIV drugs: each class
works by interfering with a specific step of the cycle.
1. HIV enters a cell Different cells in your body have different molecules or
receptors on their surfaces. These molecules identify the cells like fingerprints.
CD4+ cells get their name from the CD4 receptors that are sprinkled over their
outer surface.
HIV also has certain specific molecules on its outer surface. These proteins
fit perfectly onto the CD4 receptors. This allows HIV to attach itself to the cell
like a key fitting into a lock.
HIV also needs to lock onto one or more co-receptors besides CD4. Once
HIV is attached to both CD4 and the co-receptor, the virus can fuse with the
cell and get inside. It’s as though there are two locks on the door, and HIV has
the key to both of them.
Anti-HIV drugs in the classes called entry inhibitors and fusion inhibitors
prevent HIV from getting inside cells.
2. HIV takes control of the cell Two molecules called RNA and DNA are
essential for every living thing. These molecules work like master instruction
manuals: they tell a living cell how to build everything it needs to build and how
to do everything it needs to do. The genes that you were born with are made
of DNA that explains how to make everything from your fingernails to your
blood cells.
HIV has its own “genes,” made of RNA. RNA is similar to but not exactly
the same as the DNA that makes up human genes. Once inside a human cell,
HIV has to convert its RNA into DNA before it can do anything else. HIV brings
along a molecule called reverse transcriptase, which converts the viral RNA into
DNA. After this conversion, the genetic material of the virus matches the genetic
material of the cell.
Anti-HIV drugs called reverse transcriptase inhibitors slow down or stop
the action of the reverse transcriptase enzyme. There are two classes of anti-
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HIV drugs that slow down this enzyme:
• nukes or nucleoside analogue reverse transcriptase inhibitors (also called
NRTIs);
• non-nukes or non-nucleoside analogue reverse transcriptase inhibitors
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(also called NNRTIs).
The nukes were the first drugs approved to treat HIV, and they continue to be a
major part of most drug regimens.
The non-nukes were developed later than the nukes. Due to their powerful
ability to suppress HIV, they have also become an important part of many treatment combinations.
3. HIV becomes part of the infected cell In the cell’s nucleus, genes made
of DNA contain all the instructions for the day-to-day running of the cell. The
cell follows the instructions that come from this DNA.
HIV takes advantage of this for its own purposes. It inserts its own viral
DNA (which was made in the previous step) into the cell’s DNA molecules—like
adding a few new beads to a necklace.
The virus uses an enzyme called integrase to make this insertion. Anti-HIV
drugs in the class called integrase inhibitors can be used to interfere with integrase, preventing the viral DNA from being inserted into the cell’s own DNA.
4. HIV tricks the infected cell into making copies of itself At this point,
the infected cell can’t tell the difference between the viral DNA and its own. It is
now programmed to produce new viruses when the cell becomes activated.
CD4+ cells can remain infected but inactive for long periods of time. This is one
of the challenges to finding a permanent cure for HIV infection. Once the infected
CD4+ cell is activated, which happens if it is called upon to respond to an
infection, it will start making copies of itself and eventually releasing new virus.
There are still a few steps needed to complete the process of making new
virus particles or HIV virions. First, the cell makes long chains of HIV proteins.
These long molecules contain all the various pieces of the new HIV virions, but
not put together in the proper way. An HIV enzyme called protease then works
like scissors to cut these chains into the correct smaller pieces. These newly
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cut pieces are assembled by the cell into new HIV virions. Finally, the new HIV
virions leave the infected cell, in a process called budding, and can go on to
infect other cells.
Protease inhibitors are the class of anti-HIV drugs that interfere with the
action of the HIV enzyme called protease. They prevent the protease enzyme
from cutting the long chains of new HIV proteins. This results in defective HIV
that cannot infect new cells. Protease inhibitors have a very powerful ability to
suppress the virus and are an important part of many drug combinations.
In order to effectively
treat HIV you have
to take a combination
of anti-HIV drugs
from different classes.
Such combinations
Putting it together: HAART combinations
In order to effectively treat HIV you have to take a combination of anti-HIV
drugs from different classes. Such combinations are called highly active antiretroviral therapy or HAART. They are also sometimes called ART (antiretroviral
therapy) or CART (combination antiretroviral therapy.)
At present, there are five different classes of drugs approved in most of the
world, including Canada:
• nukes;
are called highly active
• non-nukes;
antiretroviral therapy
• protease inhibitors;
or HAART.
• entry and fusion inhibitors;
• integrase inhibitors.
Each of these classes inhibits the HIV life cycle differently as described in the
section above.
Drug names and the names of drug classes can be wordy and confusing.
There is no single “best”
It does take a little getting used to, but don’t let it throw you too much. You may
combination of drugs that
end up sounding like an expert, but if not, don’t forget that your treatment won’t
overshadows all the rest.
stop working just because you forget exactly what “reverse transcriptase” means.
The goal is to pick a
combination that will
Choosing treatment: what to use?
work as well as
There is no single “best” combination of drugs that overshadows all the rest.
possible for you.
Instead, there are a number of desirable things to look for. The goal is to pick a
combination that will work as well as possible for you; there may be more than
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one of these. The most important things to look for in a drug combination are:
• efficacy—how well does it work? A treatment combination should lower
viral load as much and as quickly as possible, with the greatest increases
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in CD4+ cell counts;
• durability—how long has it been proven to work? The effects should be
sustained over the longest possible time;
• tolerability—how easy is it to take? Side effects, both short term and long
term, should be as tolerable as possible, and the dosing schedule should
be easy to live with.
There are other questions to consider, as well. For instance, what are your
prospects for treatment choices later on? HIV can develop resistance to drugs,
especially if they aren’t taken correctly or if the doses are too low because of
poor absorption. Could the drugs in your combination lead to resistance patterns that would make effective second- and third-line combinations harder to
There are several
preferred combinations
that have performed well
over years of study.
find? Your doctor will pay great attention to such questions and we’ll talk about
this issue in the Making it Work section, on page 137. It is also important to
know if the drugs in your HAART combination interact with any other drugs you
are taking now or may need to take in the foreseeable future. We’ll discuss this
later on page 138. If you are pregnant or thinking about becoming pregnant,
this could also impact your treatment choices.
Given all of these questions, and the dozens of anti-HIV drugs available,
the possibilities might seem mind-boggling. Fortunately, that’s not quite the
case. While new drugs, strategies and combinations are being investigated all
the time, there are several preferred combinations that have performed well
over years of study. Many alternative combinations are available as well.
Starting treatment:
first-line treatments
First-line treatments refer to the combinations of anti-HIV drugs that are
usually taken by people who are starting treatment for the first time. First-line
treatments are well studied and have a proven track record for people starting
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HAART. Your doctor will likely perform a drug resistance test to help decide
which combination will work best for you. Currently, three classes of anti-HIV
drugs are most often used in first-line treatments: nukes, non-nukes and protease
inhibitors. The other classes of drugs are generally only used by people who
have already taken treatment and/or are resistant to some of the drugs in firstline treatments. However, this may change in the future.
At the time of writing, the standard first-line treatment combinations
consist of two nukes, plus either a protease inhibitor or a non-nuke. These
are sometimes referred to as protease inhibitor-based and non-nuke-based
therapy, respectively.
Three classes of anti-HIV
Protease inhibitor-based therapy
The protease inhibitor/two-nuke combination is the oldest version of HAART,
drugs are most often
and the one for which we have the most long-term research data. The power
used in first-line
of protease inhibitor-based therapy as a treatment combination is well proven.
treatments: nukes,
non-nukes and
protease inhibitors.
However, most currently available protease inhibitors have possible side effects,
and many are subject to a wide range of drug interactions (see page 138).
Protease inhibitor-based combinations almost always include a small dose
of ritonavir (Norvir). The ritonavir works to boost the levels of the other protease
inhibitors in the combination, without having to take a larger dose. This
approach is called boosted protease inhibitor therapy.
For information about the side effects of protease inhibitor-based therapy
(see Chapter 11, Side effects and symptoms).
Non-nuke-based therapy
Non-nuke-based regimens use two nukes plus one non-nuke. In clinical trials,
protease-inhibitor-based and non-nuke-based combinations have both proven
to be very effective and durable (that is, they can keep HIV suppressed for
many years).
For information about the side effects of non-nuke-based therapy, see
Chapter 11, Side effects and symptoms.
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Once-daily therapy
Very few people actually like taking pills. Since effective anti-HIV drugs first
became available, there has been a push to find combinations that require
fewer pills, fewer times per day—preferably, once-daily drug combinations.
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The danger here lies in putting the cart before the horse: more convenient
does not necessarily mean better, and any once-daily combination also has to
be proven effective and durable. Recently, several such options have become
available. For obvious reasons, most people living with HIV greatly prefer these
once-daily combinations. There is also evidence that once-daily combinations
make adherence easier, and thus may be more effective in the long term.
However, there are some potential drawbacks that may be less obvious.
If you are only taking drugs once a day, skipping even one dose means there
could be inadequate amounts of the drug in your bloodstream for quite a
Sticking to your
pill-taking schedule
(this is called
lengthy period. This could increase the chance of developing drug resistance.
“adherence”) is very
The trade-off, therefore, is that while once-daily therapy may be easier, adher-
important: even missing
ence also becomes even more important.
pills occasionally
could sabotage your
Making it work:
aiming for long-term success
long-term success in
using anti-HIV drugs.
Resistance and adherence
No matter which drugs you end up taking, there is one crucial rule: the pills only
work when you take them. “Duh,” you say, but remembering to take your pills
at the right times every day isn’t always easy. And sticking to your pill-taking
schedule (this is called “adherence”) is very important: even missing pills occasionally could sabotage your long-term success in using these anti-HIV drugs.
This may set off all sorts of alarm bells for you. Some people don’t take
kindly to being told what to do, even (or especially!) when they’re told it’s “for
your own good.” Others may feel that the whole idea of adherence is very
challenging or overwhelming and will take some getting used to. But this isn’t
just an exercise in finger-wagging—adherence is crucial if the drugs are going
to work.
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Pill-popping schedules and correct doses are designed to keep enough
drugs in your bloodstream to keep the virus suppressed. Missing doses means
that drug levels may, at least temporarily, drop too low to keep the virus under
control and HIV can make more copies that will go on to infect new cells. In the
short run, this may not be a disaster—the next drug dose will probably knock
the virus back down under control. The real danger is drug resistance. If the
virus keeps making copies of itself while exposed to those low drug levels, it
will eventually figure out how to make copies of itself even at the proper doses.
Then your drugs will no longer work for you. Your viral load will go back up and
If the virus keeps making
your CD4+ cell count will start to fall, even if you keep taking the drugs. Then,
copies of itself while
you’ll need to find a new combination that will be effective against the resistant
exposed to low drug
virus. That may not be impossible, but it’s trickier than just staying with a combination that already works.
levels, it will
So, that’s why you may sometimes feel like you’re being lectured about
eventually figure out
adherence. Missing the occasional dose is not the end of the world (let’s face it;
how to make copies of
itself even at the proper
doses. Then your drugs
will no longer work
for you.
there’d be little hope for any of us if that were true). But you’ll keep your drug
combination working as long as possible by sticking to your combination as
best you can.
If you are having difficulties remembering to take your drugs as they were
prescribed, it’s important to get help. Sometimes people have underlying problems,
such as depression or substance use, that may affect their adherence. Dealing
with these underlying issues can help to improve adherence. Your doctor and
pharmacist may have practical tips to help with adherence, so be sure to discuss
this with them before starting your pills, or if you experience any challenges in
You’ll keep your drug
combination working
as long as possible by
sticking to your regimen
as best you can.
taking your pills regularly.
If you are at a point in your life, for whatever reason, where you are not
able to take your pills regularly and as prescribed, you should take a clear look
at exactly what’s giving you trouble. Solving adherence problems is a very individual matter. Your pharmacist, clinic nurse or even friends who are also HIVpositive can often help you work out strategies. In spite of the importance of
your anti-HIV combination in keeping you healthy, perhaps you are not ready
to be taking HAART until you get some things in your life sorted out, like your
housing situation or substance use issues. Talk to your doctor and perhaps you
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can find a combination that is more “forgiving” and easier for you to take. While
it does take some getting used to, drug adherence should eventually become
as routine as brushing your teeth.
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Drug interactions
A drug interaction occurs when you are taking a combination of drugs and one
drug affects how the others are absorbed, broken down, or flushed out of the
body. When choosing the drugs that will make up your HAART combination,
it’s important to look at the possibility of drug interactions. Drug interactions can
greatly affect the levels of drugs in the body. Too-high drug levels can lead to
Your doctor and
increased (sometimes dangerous) side effects. If levels are too low, the drugs
pharmacist may have
will not work properly. With anti-HIV drugs, this can lead to the drug resistance
you take such pains to avoid: you don’t want your near-perfect adherence
sabotaged by an unexpected drug interaction.
Complex drug interactions are just one more reason you need expert
medical care. An experienced doctor and pharmacist should be able to plan
your treatment so you don’t run into this trouble. Your part of the bargain will
practical tips to help with
adherence, so be sure to
discuss this with them
before starting your pills,
be to make sure your doctor and pharmacist are aware of everything you’re
or if you experience any
taking—prescription drugs, over-the-counter medications, herbal and nutritional
challenges in taking your
supplements, and even recreational drugs. Most drug interactions can be
anticipated and dealt with safely. See CATIE’s A Practical Guide to HAART for
pills regularly.
more information.
Changing treatment:
after first-line therapy, what next?
Even with the best planning, you may find you have to change your drug
combination. Maybe the combination is not working to control HIV (so your viral
load doesn’t stay undetectable), or maybe it doesn’t work for you because of
difficulties with adherence (see above).
MANAGING YOUR HEALTH
While it does take
some getting used to,
drug adherence should
eventually become as
routine as brushing
your teeth.
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Changing because of side effects
Sometimes your treatments seem to be working just fine: your viral load is
staying undetectable, and your CD4+ cell counts are climbing. Yet despite the
“good numbers,” you find the side effects are too hard to take, and they are
just not going away.
In that case, it’s important to talk to your doctor to find out exactly what is
causing the side effects you are experiencing. If you and your doctor determine
that your drugs are causing the side effects, you have two options: find some
Even with the best
planning, you may find
you have to change your
drug combination.
way to control the side effects, or switch off the drug(s) causing them.
Many side effects can be dealt with. See Chapter 11, Side effects and
symptoms, for a preliminary discussion of how to manage side effects and
symptoms. Depending on the side effect, you might consider seeing a naturopathic doctor or nutritionist. By using an integrated approach to HIV—combining the best available drugs with the remedies that help eliminate side effects
and other symptoms—you may be able to stay on your drugs happily instead
of miserably.
If nothing works to make the side effects more bearable, then it’s time to
talk to your doctor about changing your drugs. Your goal is to find a different
If your viral load is
still detectable after a
reasonable time on
combination that’s still effective, while avoiding side effects that make you miserable. It isn’t usually necessary to change all the drugs in your combination.
Often, your doctor can pinpoint the drug responsible for the problems you’re
experiencing, and change just that one while leaving the others alone.
therapy (usually about
24 weeks)—or if it
bounces back up to
consistently measurable
levels after being
undetectable—that
indicates your treatment
is not working.
Changing because of treatment failure
One big reason for changing treatment is treatment failure—that is, your treatment
isn’t keeping HIV suppressed. Your viral load will tell you this: on successful
treatment, viral load should drop to undetectable and stay that way. If your viral
load is still detectable after a reasonable time on therapy (usually about 24
weeks)—or if it bounces back up to consistently measurable levels after being
undetectable—that indicates your treatment is not working.
With your doctor, you’ll need to work out why the treatment failed (was it
because of drug resistance or adherence problems?) and which drugs you
need to go on next. This decision is more challenging than the choice of your
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first combination. You and your doctor will have to consider which of the original
drugs have failed, and which ones will likely work instead.
Cross-resistance is a challenge here: when HIV becomes resistant to one
drug, it may also be resistant to other drugs in the same class, even if you’ve
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never taken them. For example, if you’re resistant to efavirenz (Sustiva, and
also in the combination pill Atripla), you’ll likely be resistant to nevirapine
(Viramune) as well. Resistance testing can help guide these choices: resistance
tests pinpoint which drugs your virus is resistant to, and which ones still have a
shot (see Chapter 9, Monitoring your health).
The sooner action is taken to switch off a failing treatment, the better.
The sooner action is
Cross-resistance can worsen the longer you stay on a failing combination,
taken to switch off
making it harder to find alternatives.
a failing treatment,
the better.
Taking breaks
and stopping treatment
One thing everybody wants to know is: once you’ve started treatment, when
can you stop? The reality, since anti-HIV drug treatment does not get rid of
or “cure” HIV infection, is that treatment is pretty much ongoing. That is, you
generally can’t stop.
Many people hoped that “drug holidays”—more technically called structured
treatment interruptions—would give people with HIV a break from the ongoing
demands and side effects of treatment.
Unfortunately, large and carefully designed studies of treatment interruptions
showed surprising and disappointing results. People who took treatment breaks,
even at high CD4+ cell counts, had greater risks of serious, even life-threatening,
complications. As a result, treatment interruptions are generally not recommended,
except in specific circumstances, for instance, severe drug toxicity, or serious
complications due to other illnesses or surgical procedures.
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Resources
Practical Guides for People Living with HIV
CATIE’s practical guide series contains extensive information about HIV
treatments. See:
• A Practical Guide to HAART for People Living with HIV
• A Practical Guide to Managing HIV Drug Side Effects
Plain and Simple Factsheets on Complementary Therapies
Available in multiple languages
In-Depth Factsheets on supplements
Comprehensive information for people living with HIV and their
care providers
The Positive Side
Health and wellness magazine contains articles about treatment, such as:
• The importance of being adherent
• Staying on the road to health
• Resistance assistance
Look under Drug Treatment Strategies in the e-zine index
(www.positiveside.ca)
TreatmentUpdate and CATIE News
News bulletins about cutting-edge developments in HIV research
and treatment
Many other relevant resources can be accessed on CATIE’s website
(www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
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Side effects
and symptoms
11
This chapter is about managing the side effects and symptoms
that come with being HIV-positive and taking anti-HIV drugs
(HAART). Though some people experience no side effects from
their drugs, for most people side effects can range from mild to
moderate reactions. In rare cases, reactions may be more serious.
CONTENTS
• General advice for side
effects and symptoms
They are sometimes temporary and disappear after a few days or
weeks. In some cases they don’t go away for a long time; sometimes they never go away. They may show up months or even
years after starting treatment. HIV disease also produces certain
symptoms, some of which are similar to the side effects of HAART.
• Digestive problems
• Metabolic problems
• Bone problems
It can be tricky to figure out whether HAART or HIV itself is to
blame. Research is revealing that it’s often a bit of both. However,
• Liver problems
something you may think is a symptom of HIV disease or a drug
side effect may in fact be a signal that something unrelated to HIV
is wrong with your body—an infection, for example. It’s important
to consult your doctor for a diagnosis.
About the author
Derek Thaczuk has worked and volunteered within the
• Pancreatitis
• Skin problems
• Muscle problems
• Headaches
HIV community since his own diagnosis in 1992. He has
provided practical support and home care, co-chaired the Ontario HIV
Treatment Network, and served as treatment resources co-ordinator at the
• Problems with mental and
emotional health
Toronto People with AIDS Foundation. Derek currently works as a freelance
writer and editor for CATIE and other organizations to bring plain-language,
• Peripheral neuropathy
understandable health and treatment information to people who are living
with HIV.
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General advice for side effects
and symptoms
SIDE EFFECTS
Just looking at a list of possible side effects from HIV or anti-HIV drugs (HAART)
AND SYMPTOMS
can fill you with panic: is all that going to happen to me? Relax: nobody is going
to get all the side effects and symptoms that will be discussed in this chapter.
You may feel more prepared for side effects and symptoms if you know
about them in advance. Discuss the possible side effects of a drug with your
doctor before starting treatment. Once you start treatment, make sure you talk
Make sure you talk to
to your doctor about side effects or symptoms you are experiencing. It’s helpful
your doctor about side
to take notes so you can describe them accurately to your doctor. The personal
effects or symptoms you
are experiencing.
health record on page 317 can assist you with this. Side effects often improve
over time. Knowing that can make it easier to stick with a drug until you see
whether the side effects really do improve.
Remember that many things could be causing the problem you are having.
Get a full diagnosis from your doctor. Yes, it could be a drug side effect—but
maybe it’s a problem with what you are eating, or an infection or a result of getting older (see Chapter 18, HIV and aging). There are options for dealing with
symptoms and side effects.
• If the problem isn’t too serious, wait and see if it improves on its own.
• If it’s clear which drug is causing the side effect, your doctor may decide
to switch you to another drug that doesn’t cause this side effect.
• Perhaps it is not a drug that is causing the problem. Maybe it is something
else that is causing it. In this case, your doctor will try to diagnose and
treat this problem.
• You and your doctor may be able to find some way to deal with the
problem so that you can live with it.
Treatments taken to relieve side effects—including natural or herbal treatments,
and even things like nasal sprays—can sometimes have side effects of their
own. They may also interact with the drugs you’re already taking. Always ask
your doctor, pharmacist or naturopath to check these interactions for you.
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Digestive problems
Problems with your digestive system—what doctors refer to as gastrointestinal
or GI problems—are among the most common drug-related side effects for
people with HIV. HIV disease itself can also cause digestive problems. These
problems can include nausea, vomiting, loss of appetite, diarrhea and gas.
11
SIDE EFFECTS
AND SYMPTOMS
Tips to help settle your stomach
• Eat small, frequent meals instead of larger ones.
• Eat salty snacks (crackers or pretzels) before eating or taking
your drugs.
• Sniff grated lemon peel or drink water with lemon in it just
Problems with your
digestive system—what
doctors refer to as
gastrointestinal or GI
before eating.
• Chew slowly and eat in a calm, relaxed environment.
• Eat cool, bland, odourless foods.
problems—are among
the most common drug-
Nausea and vomiting
Nausea—that sick-to-your-stomach feeling like you may throw up—can be
related side effects for
people with HIV.
caused by many drugs, including anti-HIV drugs. It is especially common in
the first few weeks after starting new drugs.
Nausea caused by anti-HIV drugs will usually lessen or go away over time.
The best approach (especially at first) may be to ride out the nausea to see if it
improves. Meanwhile, in consultation with your doctor, you might try taking the
drug at a different time of day. If your prescription permits it, you can try taking
it with food if you’ve been taking it on an empty stomach, or vice versa. Severe
nausea, especially with other symptoms such as fever, needs to be treated
immediately by your doctor or through the emergency department of your local
hospital. It can be a sign of a serious problem.
To treat nausea naturally, try taking ginger in capsules or as a syrup, or
make tea from fresh ginger root. You can also drink brands of ginger ale that
actually contain a good dose of ginger (usually from health food stores).
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Anti-nausea drugs include over-the-counter remedies like Gravol (dimenhydrinate) as well as more powerful prescription drugs. Always check for possible
drug interactions with your doctor or pharmacist.
SIDE EFFECTS
AND SYMPTOMS
Loss of appetite
Even if you’re not outright nauseous, you may have little interest in food. Causes
might include:
• infections and fever;
• low levels of hormones, especially testosterone;
Keep tasty snacks
• depression: many people lose interest in eating when they’re depressed;
around so you can make
• nutrient deficiencies, especially zinc: take a potent multivitamin/mineral for
the most of any moment
of appetite.
overall micronutrient support.
All of these causes of appetite loss can be diagnosed and treated by your doctor.
Eating something is better than eating nothing: just do the best you can.
Try the tips in the nausea and vomiting section above. Keep tasty snacks
around so you can make the most of any moment of appetite. And try to drink
lots of fluids and take in lots of protein and calories when you’re feeling better,
to make up for the times when you don’t feel like it.
To make sure you’re getting enough calories and nutrients, you may need
to rely on supplemental drinks, high-quality protein powders such as whey
protein, and nutrient-rich foods. Talk to a dietician or nutritionist experienced
with HIV for recommendations and practical suggestions.
Some substances can act as appetite boosters.
• Medicinal marijuana can be a powerful appetite stimulant. Obviously,
marijuana can leave you feeling “stoned,” but it may take much less to
boost your appetite than it does to make you high.
• Marinol, a synthetic form of marijuana, can also be used as an appetite
stimulant and is available by prescription from your doctor.
• Megace (megestrol acetate) was widely used in the past but has several
serious drawbacks. It can reduce testosterone production, and has been
linked to a serious bone condition called avascular necrosis (see page
155). So Megace is not often recommended for people with HIV.
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Marijuana to stimulate your appetite
Smoking marijuana can be hard on your lungs (smoking anything isn’t
healthy), so some people prefer to bake it into brownies or cookies.
Marijuana is also illegal unless you have gone through a special process
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SIDE EFFECTS
AND SYMPTOMS
with the federal government allowing you to use it legally for medical
purposes (see Chapter 4, Healthy living).
When you are starting a
Diarrhea
Diarrhea is a symptom of many common conditions such as food poisoning,
new combination of
parasites or intestinal infections. HIV infection affects the intestines and can
HAART, diarrhea is often
cause diarrhea. It is also a common side effect of many drugs, including those
a short-term side effect.
used to treat HIV. When you are starting a new combination of HAART, diarrhea
is often a short-term side effect. While it may get better by itself over time, diarrhea can also signal more serious problems. Diarrhea that is severe or begins
suddenly should be reported to your doctor immediately: it may be a sign of an
infection that needs to be treated.
In people with HIV, diarrhea can have more than one cause. You may not
see a great improvement until all of the causes have been identified and dealt
with, so try not to get discouraged if you don’t succeed at first. Some possible
causes of diarrhea that you may be able to manage yourself include:
• stress;
• excessive consumption of sugar or caffeine, spicy foods and alcohol—try
cutting back;
• trouble digesting fat—cut back on dietary fat and try taking lipase, a
fat-digesting enzyme;
• lactose intolerance—cut out or decrease dairy products and take a
lactase enzyme when you do eat them.
Other treatments include:
• anti-diarrhea drugs such as Imodium (loperamide) or Lomotil
(diphenoxylate/atropine combination);
• the supplement L-glutamine;
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• “friendly” bacteria supplements, such as acidophilus;
• calcium supplements.
Increasing your soluble fibre intake can help by bulking up your stool and
absorbing the excess water. You can get soluble fibre from:
• peeled apples or apple sauce;
• other fruits, including bananas, strawberries, apricots, peaches, pears
and plums;
• grains like oatmeal, oat bran, peas, beans and barley;
• soluble fibre supplements such as psyllium or ground flax seeds.
If your digestive system
Make sure you’re getting enough calories and liquids and that you stay hydrated.
isn’t working properly,
Don’t cut down on your liquids in the hope of “drying up the flood”—you need
undigested food can
make it further down
to replace the water and minerals you’re losing.
Basic hydration formula
into your intestines,
where bacteria will feed
Mix one cup orange juice with three cups water and half a teaspoon of salt.
Take regular sips to help keep yourself hydrated.
on it and produce gas.
Gas
Smelly intestinal gas and abdominal bloating can result from drugs or from
other problems. If your digestive system isn’t working properly, undigested
food can make it further down into your intestines, where bacteria will feed on
it and produce gas. Many of the tips for diarrhea may also help with gas. Try
taking digestive enzymes or glutamine to help you digest fat, which is often
the culprit.
Try to identify which foods cause you the most problems and cut down or
eliminate them. Some of the worst culprits are dairy products, broccoli, beans,
garlic, onions, cabbage and tough-to-digest vegetable skins.
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Metabolic problems: fat redistribution,
heart problems and diabetes
People with HIV, including those on HAART, may be at an increased risk of
heart problems, including disease of the heart and blood vessels, stroke and
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erectile dysfunction. Levels of cholesterol and other fats in the blood can be
raised, which increases the risk of heart problems. Blood sugar levels can also
be higher than normal, increasing the risk of diabetes. There can also be visible
changes in the way fat is distributed in the body. This combination of metabolic
(body chemistry) changes and fat redistribution is called lipodystrophy.
Fat redistribution
People with HIV,
Changes in the way fat is distributed on your body may include:
• lipoatrophy—fat loss in the face, arms, buttocks and legs;
including those on
• unwanted fat buildup in the breasts and belly, on the back at the base
HAART, may be at
of the neck (“buffalo hump”) and sometimes as fatty lumps (lipomas) in
an increased risk of
various parts of the body.
These changes may occur separately or together, and may or may not be
accompanied by other metabolic abnormalities.
Despite a great deal of research, the causes of fat redistribution are not yet
fully understood. Many experts believe that the causes include some combination of drug side effects, HIV disease itself, and possibly other factors that are
heart problems. Blood
sugar levels can also be
higher than normal,
increasing the risk of
as yet unknown. Unfortunately, stopping drugs doesn’t always reverse the
diabetes. There can also
problems, although there have been reports of gradual improvements over time
be visible changes in the
in at least some people.
Although research into fat redistribution is continuing, there is not a great
deal of evidence for strategies for treating it. The drugs d4T (Zerit) and, to a
way fat is distributed
in the body.
lesser extent, AZT (Retrovir, and also found in the combination pills Combivir
and Trizivir), have been linked to loss of fat, particularly in the face, arms and
legs. The best strategy to avoid fat redistribution is to avoid drugs associated
with it or work with your doctor to see if you can switch off the therapy you are
taking at the first sign of this condition. Many combinations, especially for people
starting therapy, try to minimize this side effect.
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For people who have lost facial fat, certain kinds of plastic surgery can
help fill out sunken cheeks and restore a normal appearance. These involve
injections of compounds such as polylactic acid (New-Fill) and polyalkylimide
SIDE EFFECTS
(Bio-Alcamid). The improvements may not be permanent and the cost of the
AND SYMPTOMS
treatments, which usually runs into thousands of dollars, is not covered by
provincial coverage plans. In some areas of the body, excess fat can be
removed via liposuction (of buffalo humps or lipomas) or surgical reduction
(for breast reduction), though the fat sometimes returns over time. Neither
approach is possible in the belly because of the high risk of hemorrhage.
The best strategy to
avoid fat redistribution
is to avoid drugs
associated with it.
Research into the causes and treatments of lipodystrophy is ongoing.
Cardiovascular (heart) problems
There are three types of fat in your blood that are monitored to assess your risk
for heart problems. These are:
• triglycerides;
• low-density or LDL (“bad”) cholesterol;
• high-density or HDL (“good”) cholesterol.
If your levels of LDL cholesterol are too high, fatty deposits can build up in the
walls of your veins and arteries. This blocks blood flow and greatly increases the
risk of stroke and heart attacks. HDL cholesterol has the opposite effect, tending
to protect you from heart disease (see Chapter 9, Monitoring your health).
The causes of HIV-related heart disease are complex. HIV itself can
damage blood vessels, while smoking and poor diet increase the risk. Some
anti-HIV drugs, especially some protease inhibitors and efavirenz (Sustiva, and
also found in the combination pill Atripla), are known to raise LDL levels and
lower HDL levels. Many people with HIV have abnormally high levels of triglycerides and LDL cholesterol, while having low HDL cholesterol levels. If left
untreated, this puts them at increased risk of heart attacks and stroke.
A heart attack happens when the blood supply to your heart muscles is
interrupted. This can damage or kill heart tissue and can be fatal within minutes.
A stroke happens when the blood supply to a part of the brain is cut off.
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Warning signs
The warning signs of a heart attack are:
• uncomfortable pressure, fullness, squeezing or pain in the centre of
the chest lasting more than a few minutes;
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• pain or numbness spreading to the shoulders, neck, jaw or arms;
• chest discomfort with light-headedness, fainting, sweating, nausea or
shortness of breath.
The warning signs of a stroke are:
• sudden weakness or numbness of the face, arm or leg;
• sudden dimness or loss of vision, particularly in one eye;
• loss of speech or trouble talking or understanding speech;
• sudden, severe headaches with no apparent cause.
Call 911 immediately if you have any of the warning signs of heart
attack or stroke.
Tips to lower your risk of heart disease
Many things other than HIV and HAART can affect your risk of heart
disease. Things you can do to lower your risk of heart disease and
related problems include:
• cutting down or quitting smoking;
• keeping blood pressure and stress under control;
• controlling diabetes, if you have it;
• eating a healthy diet low in saturated fat and high in fibre;
• keeping a healthy weight;
• exercising;
• controlling your cholesterol levels.
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Drugs such as statins and fibrates can be used to control dangerously high
levels of cholesterol and triglycerides in the blood. Some of these drugs can
interact with your anti-HIV drugs, so it is important to talk to your family doctor
or pharmacist about all the drugs you are taking. Some supplements may help
control blood fats, such as:
• niacin (a B vitamin);
• carnitine;
• omega-3 fatty acids, found in fish oils and flax seed oil.
Talk to your doctor about supplements that may help you.
Drugs such as statins and
fibrates can be used to
control dangerously high
Insulin resistance and diabetes
Your body requires sugar (glucose) for energy. Glucose comes from the digestion
of carbohydrates in foods such as fruits, vegetables, cereal, pasta and dairy
levels of cholesterol and
products. The hormone insulin helps glucose to enter your cells and provide
triglycerides in the blood.
food energy. Insulin resistance happens when your body’s cells do not respond
properly to insulin and cannot take up the glucose. As a result, glucose builds
up in the blood. The pancreas, which produces insulin, produces more insulin
to help move the glucose into your cells. If your body cannot produce enough
insulin or the cells do not respond to it properly, the result is hyperglycemia or
high blood sugar. This can lead to diabetes mellitus (type 2), a state of persistent
high blood sugar. The use of protease inhibitors is linked to insulin resistance in
people with HIV.
Your doctor will monitor your blood glucose levels closely if you are taking
The use of protease
inhibitors is linked to
insulin resistance in
people with HIV.
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protease inhibitors as part of your HAART combination. Managing your blood
glucose levels through food and exercise is a good way to prevent or manage
insulin resistance. Sometimes your doctor may need to switch your HAART
combination to avoid protease inhibitors or prescribe antidiabetic drugs to
control your blood glucose levels.
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Bone problems
Thinning bones are a normal part of aging, although this usually happens very
slowly. In people with HIV, however, thinning bones may happen earlier in life as
a result of anti-HIV drugs or nutritional deficiencies that can be caused by HIV
disease itself. Research suggests that more than one-third of people with HIV
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may have very early-stage bone loss. Osteopenia is the earlier, less severe,
form of bone loss. If it continues to the more advanced stage, called osteoporosis, your bones become porous, brittle and can break very easily—particularly at the hip, wrist and spine.
Nutrient deficiencies are a major cause of loss of bone density. Diets low
Thinning bones may
in calcium and vitamin D can speed up bone thinning. These deficiencies can
happen earlier in life as
happen in people with HIV because HIV affects the digestive system, resulting
a result of anti-HIV
in poor absorption of food and the nutrients it supplies to our bodies. It is very
drugs or nutritional
important to ensure that you are getting enough calcium and vitamin D from
your diet or by taking supplements. Talk to your doctor, pharmacist or a nutri-
deficiencies that can be
tionist knowledgeable about HIV disease about how to prevent or slow down
caused by HIV disease
bone thinning.
itself. It is very
Among people with HIV, the biggest risk factors for bone loss, aside from
nutrient deficiencies, are age, living with HIV for a long time, low body weight,
important to ensure that
low CD4+ cell counts and smoking. Unlike the HIV-negative population, where
you are getting enough
women are most affected, HIV-positive men are at risk for bone loss as well.
Studies do not agree whether or not HAART is to blame for bone loss.
calcium and vitamin D
Currently, most doctors would argue that since HIV itself worsens bone loss,
from your diet or by
HAART does more good than harm for your bones.
taking supplements.
Since bone loss is painless, you may have no idea it’s happening until you
break a bone. You need a bone scan to diagnose bone thinning A baseline
scan (done before you start HAART) can then be compared to later readings
(see Chapter 9, Monitoring your health).
Bone death: avascular necrosis
Avascular necrosis is a rare but serious condition in which the blood supply to
the bone gets cut off, causing the bone tissue to die. This usually happens in
the hip joint, but can also happen in the shoulder, knee or hand.
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The causes of avascular necrosis aren’t fully understood. Possible risk
factors may include:
• long-term use of corticosteroid drugs;
• high cortisol levels (cortisol is a hormone produced by the body);
• high levels of blood fats, especially triglycerides;
• heavy alcohol use;
• bone injuries or infections;
• testosterone injections;
• scuba diving.
Unlike osteopenia and osteoporosis, which often cause no noticeable symptoms,
avascular necrosis causes symptoms, including:
• stiffness or aching in the hip area;
• decreased ability to move the joint;
• pain in the hip joint or groin area, which may radiate down the leg to the knee.
If you have any of these symptoms, get a comprehensive physical exam including a bone scan.
If avascular necrosis is detected early enough, small holes can sometimes
be drilled in the bone to relieve the pressure on the bone marrow and increase
blood flow, allowing new blood vessels to grow. This may reduce pain and slow
the problem. However, there are no procedures to permanently delay bone
death once it has started. If it has progressed too far in the hip joint, the only
thing that works is hip replacement.
If you are at risk for avascular necrosis, you might want to avoid activities
that put pressure on the hip joint, such as:
• some weight-lifting exercises (talk to an expert physical trainer to find out
which exercises to avoid… not all of them are bad);
• squats;
• running on a hard surface;
• carrying heavy weight on your shoulders.
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Liver problems
Your liver processes most things you put into your body. Although it can handle
a lot of toxins (like alcohol), your liver can start to break down when it’s under
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too much strain.
The most frequent causes of liver damage in people with HIV are:
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• excessive alcohol and recreational drug use;
• co-infection with hepatitis viruses;
• medications and herbal supplements that are processed by the liver.
The health of your liver is usually assessed by liver enzyme tests (see,
Chapter 9, Monitoring your health). You should be getting your liver enzymes
monitored regularly, especially if you are on HAART or have existing liver damage
Although it can handle
a lot of toxins
(for instance, due to hepatitis C). Severe liver damage can cause abdominal
(like alcohol), your liver
pain, swelling of the abdominal area, fever and jaundice (yellowing of the skin
can start to break down
and/or eyes).
Try to eliminate as many sources of toxicity as possible. This includes:
• cutting down or eliminating recreational drugs and alcohol;
when it’s under too
much strain.
• getting vaccinated against hepatitis A and B;
• avoiding infection with hepatitis C by not sharing needles and drug use
equipment and by not having unprotected sex (see Chapter 4, Healthy living,
Chapter 7, Your sexual health, and Chapter 12, HIV-related infections and
cancers). If you are infected with hepatitis C, consider getting treament;
• cutting down consumption of junk foods, soft drinks and caffeine (coffee
and cola);
• eating less saturated fat;
• talking to your doctor, pharmacist or naturopath to make sure you’re not
taking medications or supplements (such as certain herbs) that might
make your liver problems worse.
Certain nutrients can also help to support and protect the liver. These include
N-acetyl cysteine and the supplement carnitine. As with all supplements, you
should carefully check with your pharmacist or doctor for possible interactions
with your anti-HIV drugs.
If there is any indication of liver damage, you should be checked for
hepatitis or any other possible infections that can damage the liver.
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Love your liver
Follow these tips to help keep your liver in good working order.
• Try to avoid alcohol altogether if you have liver disease (hepatitis).
• Make sure that you are vaccinated against hepatitis A and B.
• Achieve and maintain a healthy body weight.
• Maintain generous stores of lean body mass (muscle tissue).
• Get enough protein.
• Choose more whole grains, whole fruits and vegetables.
• Eat a moderate amount of dietary fat and emphasize
“good” fats.
• Take a multivitamin to prevent deficiencies.
• Do not take iron supplements unless prescribed by your doctor to
treat an iron deficiency.
• Supply extra antioxidants to the body.
• Talk to your naturopath and liver specialist about supplements such
as milk thistle (silymarin) and S-adenosyl methionine (SAMe), which
are being studied for their effects on the liver and other health problems.
High levels of
triglycerides in the blood
can put people with
HIV at increased risk
for pancreatitis.
Pancreatitis
Pancreatitis is an inflammation of the pancreas, the organ that secretes digestive
enzymes and insulin. Pancreatitis can cause:
• severe nausea;
• vomiting;
• severe abdominal pain.
High levels of triglycerides in the blood can put people with HIV at increased
risk for pancreatitis. Pancreatitis can also be caused by some anti-HIV drugs,
including ddI (Videx) and d4T (Zerit). If these symptoms persist, contact
your doctor
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Skin problems
HAART drugs can cause skin problems, including rash, dryness and itchiness.
More rare is a severe skin rash, which can be a sign of a dangerous reaction to
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your drugs.
Rashes can be caused by nevirapine (Viramune), delavirdine (Rescriptor),
AND SYMPTOMS
efavirenz (Sustiva, and also found in the combination pill Atripla), nelfinavir (Viracept),
abacavir (Ziagen, and also found in the combination pills Trizivir and Kivexa) and
etravirine (Intelence). The antibiotic combination trimethoprim and sulfamethoxazole (Septra, Bactrim) can also cause rash and sensitivity to sunlight.
Most of the time, skin rashes caused by drugs are mild and disappear
after a couple of weeks. However, rashes can sometimes be a sign of a much
more serious reaction (hypersensitivity). Drug hypersensitivity includes the
following symptoms:
Talk to your doctor
immediately if you get a
rash while taking any
anti-HIV drugs.
• severe rash;
• flu-like symptoms such as fever, aches, pains, tiredness and headache;
• muscle or joint aches and pains;
• nausea, vomiting and diarrhea;
• breathing problems such as difficulty breathing, sore throat and cough.
Talk to your doctor immediately if you get a rash while taking any anti-HIV
drugs, especially if you have recently started or changed your combination.
If your doctor is not available, go to an emergency department.
In general, the only solution for severe skin reactions is to stop taking the
drug that is causing it.
When a rash is not too severe, it may gradually go away after a few weeks
on the drug. Sometimes your doctor will prescribe a corticosteroid skin cream
that will suppress the reaction. These are only recommended for short-term use.
Naturopaths have found that essential fatty acid supplements like borage
and flaxseed oils can often help promote skin health. You can also take a
potent multivitamin and mineral to provide the vitamin E, vitamin A, zinc and B
vitamins needed for overall skin health. Drink plenty of water and fluids. Try
non-perfumed moisturizing creams and oatmeal baths and avoid harsh, antibacterial or highly scented soaps.
You can sunburn more easily if you’re taking certain drugs such as Septra
or Bactrim, so avoid prolonged exposure to direct sunlight and use sunscreen.
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Abacavir hypersensitivity
A severe hypersensitivity reaction can be caused by abacavir (Ziagen or in
the combination tablets Trizivir and Kivexa). This reaction can include fever,
rash, nausea and vomiting, shortness of breath, tiredness and muscle pain.
It usually happens within the first six weeks of starting the drug, but (more
rarely) it may begin later. This reaction is not common but can be serious if
left untreated.
A simple blood test that your doctor will perform before you start taking
abacavir will determine if you are at risk. If you are positive for this test, your
doctor will not use abacavir.
If you experience a hypersensitivity reaction to abacavir, you should never
take the drug again.
Muscle problems
People with HIV can develop muscle problems, including muscle aches and
pains (myalgia), joint pain (arthralgia), cramps and weak muscle tissue (myopathy)
that can result in tiredness.
Sometimes muscle pains are caused by nutrient deficiencies. Lack of
People with HIV can
develop muscle problems,
including muscle aches
and pains (myalgia), joint
pain (arthralgia), cramps
and weak muscle tissue
(myopathy) that can
result in tiredness.
magnesium may be a factor, especially in muscle cramping. A deficiency of
L-carnitine can occur in people with HIV and this can cause muscle damage.
In such cases, supplements can help. In rare cases d4T (Zerit) and lipid (fat)lowering drugs called statins can cause muscle problems.
Rare serious problems related to the brain or central nervous system can
make it hard to control your muscle movements. Talk to your doctor if any
muscle problems develop and find out what is causing them. Severe problems
may need immediate attention. For milder problems, there are some things you
can do on your own to deal with the discomfort.
Aspirin (ASA) and other over-the-counter pain medicines such as Tylenol
(acetaminophen) may help muscle aches and pains, but they don’t really solve
muscle problems. Make sure you don’t exceed the recommended dosage and
don’t take pain relievers over extended periods of time.
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You can also try:
• Epsom salt baths: mix about three cups of Epsom salts into a hot bath;
• acupuncture and/or massage therapy;
• chiropractic adjustments.
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Lactic acidosis
Your muscles naturally release lactic acid as a waste product—that’s the “muscle
burn” you feel after working out. Much more rarely, lactic acid can build up to
dangerous levels in the blood—a condition known as lactic acidosis. This has
been seen in people on the anti-HIV drugs called nukes (see Chapter 10,
Treatments). Lactic acidosis can cause a wide range of symptoms including:
• unexpected tiredness;
• nausea;
• vomiting;
• abdominal pain;
• unexplained weight loss;
• shortness of breath or difficulty breathing.
If you have a headache
Some of the symptoms of lactic acidosis are so common that they can be hard
that is severe, lasts for
to interpret. (Who hasn’t felt tired or nauseated?) The usual rule applies: better
more than a few hours,
safe than sorry. Get immediate medical attention if you have any signs of lactic
acidosis. It can be fatal if left untreated.
or that recurs, get a
thorough diagnosis from
your doctor as soon
Headaches
as possible.
Headaches can be a side effect of HAART or other drugs, or a sign of an
infection or another problem.
If you have a headache that is severe, lasts for more than a few hours,
or that recurs, get a thorough diagnosis from your doctor as soon as possible.
It is best to not treat such headaches until your doctor has diagnosed the
problem and told you what treatment is best. Covering up the symptom with
pain relievers might mean that your doctor will miss something serious.
Good old Aspirin (ASA) or buffered Aspirin is often the best choice for
reducing headache pain. In general, only use Aspirin or other pain relievers
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Anxiety, depression,
nervousness, dizziness,
when you absolutely need them. Use them according to directions and avoid
long-term use, which can be damaging to the liver and kidneys,
Other possibilities for treating and preventing some kinds of headaches
include acupuncture or acupressure (see Chapter 5, Complementary and
alternative therapies).
Problems with mental
and emotional health
problems with falling
Anxiety, depression, nervousness, dizziness, problems with falling asleep and
asleep and nightmares
nightmares are all possible side effects of certain anti-HIV drugs. Collectively,
are all possible side
effects of certain
anti-HIV drugs.
these symptoms are known as CNS side effects because they affect the central nervous system or CNS—the brain and spinal cord.
The symptoms described above can be caused by efavirenz (Sustiva, and
also found in the combination pill Atripla). They can occur both during the day
(including muddled or unfocused thinking, feelings of paranoia and disorientation,
depression) and night (insomnia and, when you get to sleep, vivid dreams and
nightmares). If efavirenz is causing insomnia, talk to your doctor or nurse about
taking it in the morning instead of at bedtime. Some people who take efavirenz
may become depressed, anxious or even have suicidal thoughts. If you are tak-
If you experience a
sudden unexplained
change in your thoughts
or feelings, if you
have dizziness, trouble
concentrating, or have
trouble co-ordinating
your movements, see
your doctor immediately.
162
ing efavirenz and have feelings like this, speak to your doctor about it. Other
drugs, such as ribavirin and interferon used in the treatment of hepatitis C, may
cause CNS symptoms as well, although not as frequently.
If you experience a sudden unexplained change in your thoughts or feelings,
if you have dizziness, trouble concentrating, or have trouble co-ordinating your
movements, see your doctor immediately. These could be signs of a CNS
infection that requires immediate treatment.
In many people with HIV, these side effects of the central nervous system
disappear gradually after several weeks, so if they are not too severe, try to
tough it out for at least a month. If the problems continue, stopping the drug
may be the only solution. It is best to avoid recreational drugs, including
alcohol, when starting efavirenz.
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Don’t overlook other causes of stress, depression or anxiety that are not
related to the side effects of your drugs. Changes in your thoughts or feelings
that occur over a period of time may be a sign of a mental health problem such
as depression or anxiety. Therapy with a good mental health therapist can help
in these cases (see Chapter 6, Your emotional health).
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Tips to help you sleep better
With sleep-related problems, there are different approaches you can
try, including:
• avoiding caffeine, sugar, alcohol and nicotine for four to six hours
before bedtime;
• avoiding strenuous exercise, bright lights and television
before bedtime;
• relaxing before bedtime by doing yoga or breathing exercises, taking a
soothing bath, or sipping calming herbal teas like chamomile.
For some people, prescription or over-the-counter drugs may also help.
Changes in your
thoughts or feelings that
occur over a period of
time may be a sign of a
Peripheral neuropathy
Peripheral neuropathy is nerve damage that causes numbness, burning,
tingling and severe pain in the toes, feet and legs, and sometimes in the
mental health problem
such as depression
or anxiety.
hands and arms. Peripheral neuropathy is most often caused by d4T (Zerit)
and ddI (Videx). Viruses, including cytomegalovirus (CMV) and HIV infection
itself, can cause or contribute to peripheral neuropathy. Diabetes, some cancer
treatments and the heavy use of alcohol, cocaine and amphetamines can also
play a role.
Let your doctor know right away if you have symptoms of peripheral
neuropathy. If drugs are causing nerve damage, it may worsen and
become permanent.
If the pain does not eventually resolve after switching drugs, or if switching
drugs is impossible for some reason, doctors may prescribe the following
drugs to relieve the pain: gabapentin (Neurontin), amitriptyline (Elavil) or
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nortriptyline (Pamelor). These are not typical pain-relieving drugs, but seem to
work for peripheral neuropathy. Standard pain-relieving drugs such as Aspirin
(ASA) or Tylenol (acetaminophen) can also be used, depending on how painful
the condition is.
Some nutritional supplements have shown promise in repairing damaged
nerves in people with diabetes. They may be helpful in people with HIV who
have peripheral neuropathy. These include B complex vitamins, especially B12
and B6, alpha-lipoic acid, gamma-linolenic acid and acetyl-L-carnitine
You may find relief from neuropathic pain with acupuncture or acupressure
treatments (see Chapter 5, Complementary and alternative therapies). Exercise
(to increase circulation to the nerves) may also help.
Peripheral neuropathy
is nerve damage that
causes numbness,
burning, tingling and
severe pain in the toes,
feet and legs, and
sometimes in the hands
and arms.
Resources
Practical Guides for People Living with HIV
CATIE’s practical guide series contains extensive information about
managing side effects and symptoms. See:
• A Practical Guide to Managing HIV Drug Side Effects
• A Practical Guide to Nutrition for People Living with HIV
• A Practical Guide to Complementary Therapies for People Living with HIV
• A Practical Guide to Herbal Therapies for People Living with HIV
Plain and Simple Factsheets on side effects and symptoms
Available in multiple languages
In-Depth Factsheets on side effects and symptoms
Comprehensive information for people living with HIV and their
care providers
The Positive Side
Health and wellness magazine contains articles about symptoms and side
effects, such as:
• Facial wasting and what you can do
• 13 ways to love your liver
• Ask the experts: gut reactions
• Good to the bone
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Look under Symptoms, Illnesses and Side Effects in the e-zine index
(www.positiveside.ca)
TreatmentUpdate and CATIE News
News bulletins about cutting-edge developments in HIV research
and treatment
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Cannabis and HIV
Information sheets by the Canadian AIDS Society on the medicinal use
of marijuana (www.cdnaids.ca)
Medical Use of Marijuana
Information on Health Canada’s system for accessing medicinal marijuana
(www.hc-sc.gc.ca/dhp-mps/marihuana/index-eng.php)
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
NOTES
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HIV-related
infections
and cancers
This chapter discusses some of the infections and
cancers that can develop in people living with HIV.
Most of these illnesses can be prevented with proper
monitoring, and care and they are much less frequent
than they were before highly active antiretroviral therapy
(HAART) became available. However, it’s important to
know about these infections and cancers so that you
can take the proper steps to prevent them.
12
CONTENTS
• Life-threatening infections
• Co-infections
• Other infections
• Vaccinations
• Cancers
About the author
Evan Collins is a doctor, psychiatrist, researcher,
consultant, advocate and person living with HIV.
His involvement with HIV/AIDS dates back to 1984
when he joined the board of the AIDS Committee
of Toronto. Over the years, he has served on numerous boards and
committees, including the CATIE board of directors, and was community
co-chair for AIDS 2006. He works as a doctor at Hassle Free Clinic in
Toronto, as a psychiatrist in a community mental health program, and as
a policy and organizational development consultant. He currently is
President of the Ontario HIV Treatment Network and is North American
NGO delegate for the Board of UNAIDS.
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HIV-RELATED
INFECTIONS & CANCERS
There are a number of infections and illnesses that can develop in people who
are living with HIV. Some of these life-threatening infections are called opportunistic infections. These only occur if your immune system is quite weakened
and your body becomes vulnerable to infections that would not affect you if
you were healthy. Co-infections are illnesses that can occur in people with normal
immune systems, but they can impact how you live with HIV. Some types of
cancers are thought to be more common in people with HIV.
Increasingly, the distinction between these different types of infections—lifethreatening infections, co-infections and even some cancers—is blurred, as
Life-threatening
some infections can fit all three categories (for example, human papillomavirus,
infections called
which can lead to cervical and anal cancer).
opportunistic infections
occur if your immune
system is quite
weakened and your body
becomes vulnerable to
infections that would
Life-threatening infections
These infections occur only when a person’s immune system has been
seriously weakened by HIV. As described in Chapter 2, HIV… the basics,
HIV attacks immune cells called CD4+ cells, which are needed for fighting off
infections and some cancers. A normal CD4+ cell count in an HIV-negative
person is around 500 to 1,500 cells in each cubic millimetre (mm3) of blood.
not affect you if you
As your CD4+ cell count gets lower, your immune system becomes unable to
were healthy.
fight off a number of common viruses, bacteria and parasites. These infections
can then take hold. (They are sometimes called opportunistic infections
because they take advantage of your weakened immune system.)
Life-threatening infections are a lot less common now, since most people
As your CD4+ cell count
take highly active antiretroviral therapy (HAART). This is because when you take
HAART it improves your immune system function and raises CD4+ levels and
gets lower, your immune
in this way helps prevent life-threatening infections caused by HIV. The main
system becomes unable
danger is in not finding out you are HIV-positive until your CD4+ cell counts
to fight off a number of
common viruses, bacteria
and parasites.
168
are already so low that you are at risk, or are already sick with a life-threatening
infection. The more common life-threatening infections are listed in the accompanying table. Some of these can still occur in people with relatively high CD4+
cell counts, but are more serious when the immune system is weakened.
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The more common life-threatening infections include a lung infection called
Pneumocystis pneumonia (PCP), an eye infection caused by cytomegalovirus
(CMV), a brain infection called toxoplasmosis, and a generalized infection called
HIV-RELATED
Mycobacterium avium complex (MAC). If your CD4+ cell count is very low, there
are drugs you can take to prevent these infections. This is called prophylaxis.
INFECTIONS & CANCERS
HIV-related Infections: These are some of the more common life-threatening infections that can affect people whose
immune systems are severely weakened by HIV.
NAME
PCP
TOXOPLASMOSIS
CMV
MAC
WHAT IS IT?
A lung infection that
causes pneumonia. Can
sometimes infect other
organs.
An infection that can
infect the brain, but also
the eye or other organs.
A viral infection of the
eye. Can also affect other
organs.
An infection of the
gastrointestinal (GI)
system that can also
affect other organs.
WHAT IS IT
CAUSED BY?
Pneumocystis jirovecii
(formerly called
Pneumocystis carinii)
Toxoplasma gondii
Cytomegalovirus
Mycobacterium avium
YOU’RE MOST AT Under 200 cells/mm3
RISK WITH CD4+
CELL COUNTS…
Under 100 cells/mm3
Under 50 cells/mm3
Under 50 cells/mm3
SYMPTOMS TO
WATCH FOR
INCLUDE*…
Shortness of breath,
trouble breathing,
tiredness, dry cough,
fever.
Constant headache, fever,
seizures, or stroke-like
symptoms (loss of vision,
sudden weakness or
speech difficulties).
Any sudden or unusual
changes in vision.
Severe diarrhea, fever.
CAN CAUSE…
Pneumonia (inflammation
of the lungs). Can be fatal
if not treated.
Damage to the brain,
eyes, or other organs.
Permanent blindness.
Disseminated (body-wide)
disease. Can be fatal if
not treated.
CAN BE
PREVENTED
BY**…
Taking preventive
medication (usually
Septra/ Bactrim) if your
CD4+ cell counts are
under 200 cells/mm3.
Taking food safety precautions, avoiding contact with
infected cat feces, taking
preventive medication
(usually Septra, as for PCP)
if your CD4+ cell counts
are under 100 cells/mm3.
Watching carefully for
symptoms if CD4+ cell
counts are below 50
3
cells/mm , and treating
immediately if necessary.
Taking preventive
medication (azithromycin
or other drugs) if your
CD4+ cell counts are
under 50 cells/mm3.
IS TREATED
WITH…
Higher doses of
Septra/Bactrim, or
other drugs.
The antibiotics pyrimethamine Ganciclovir or other
and sulfadiazine or other
drugs.
drugs.
Powerful combinations of
antibiotic drugs.
*These lists of symptoms are not complete. You should immediately alert your doctor of any sudden or worrisome symptoms, especially if your
CD4+ cell counts are low.
**Most life-threatening infections are much easier to prevent than to treat. The best way to prevent life-threatening infections is to keep your CD4+
cell counts above the danger levels. If that is not possible, prophylactic (preventive) drugs can lower the risk of many life-threatening infections.
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Co-infections
These are infections that can occur even in people with HIV who have
adequate CD4+ levels—just as they can occur in people who do not have
HIV-RELATED
INFECTIONS & CANCERS
HIV. They are called co-infections because you have them along with HIV.
Co-infections can complicate your HIV treatment and make living with HIV
more difficult. HIV can also complicate the treatment and diagnosis of a
co-infection. Although they may occur at normal CD4+ levels, the lower your
CD4+ cell count is, the more of a problem they can be.
CO-INFECTIONS: These are some of the more common co-infections that people with HIV may have.
NAME
HEPATITIS B
HEPATITIS C
TB
WHAT IT IS:
A viral infection of the liver.
A viral infection of the liver.
A lung infection.
IT’S CAUSED
BY…
The hepatitis B virus (HBV).
The hepatitis C virus (HCV).
A bacterium called Mycobacterium
tuberculosis.
IT’S
TRANSMITTED…
Through blood and body fluids;
can be transmitted sexually.
Mostly through blood; sometimes through sex, especially in
gay men.
By close contact with someone with
TB, by breathing the air they have
coughed or sneezed into.
HOW DO I KNOW
I HAVE IT?
HBV may cause flu-like symptoms or jaundice, but there
may be no symptoms. Blood
tests can tell whether you’ve
been exposed.
There are often no symptoms of
being infected with HCV. Blood
tests can easily detect it.
A skin test can tell whether you
have been exposed.
CAN CAUSE…
Liver damage. However, many
people with HBV clear the
infection on their own. Blood
tests can tell whether you are
actively infected.
Liver damage and, in the long
term, liver cancer.
Fever, chills, trouble breathing, and
weight loss. TB can cause serious
or fatal illness if not detected and
treated.
CAN BE
PREVENTED
BY…
Vaccination; avoiding exposure
to the HBV virus.
Avoiding exposure to the
HCV virus.
Avoiding exposure.
IT’S TREATED
BY…
Antiviral drugs, but it’s not
clear which treatment is best.
People with HIV and HBV must
be treated carefully to avoid
drug resistance.
A combination of antiviral drugs.
Treatment lasts several months
to a year, may not be successful, and can have difficult side
effects.
A several-month course of drugs,
depending on whether the infection is “active” or not. TB can easily
become drug-resistant if the full
course of treatment isn’t taken.
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Hepatitis
Chronic hepatitis is an increasingly common co-infection for many people with
HIV. Hepatitis is a liver condition usually caused by viruses called hepatitis A,
hepatitis B or hepatitis C. These viruses infect the liver and can cause jaundice
(yellow skin and eyes), dark urine, pale stool and severe fatigue. It is a good
12
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INFECTIONS & CANCERS
idea for your doctor to check regularly for these infections. Hepatitis B and C
are transmitted by:
• blood-to-blood contact through sharing drug-using equipment,
or personal care items like razors;
• transfusion of blood and blood products before 1992 when the Canadian
system started screening;
• unprotected sexual intercourse;
• being passed from mother to child during childbirth.
Co-infections can
complicate your HIV
treatment and make
Hepatitis A is another, usually less serious, viral infection of the liver. Hepatitis A
living with HIV
is spread through feces (shit), and you can be infected by contaminated food
more difficult.
(for instance, if someone handling your food has hepatitis A and did not wash
his or her hands). If you are exposed to hepatitis A, it can make you quite sick
for a few weeks, but your immune system usually clears it. Hepatitis A very rarely
causes permanent damage unless you already have hepatitis B or C as well.
If infected with the hepatitis A or B virus, some people get over the initial
liver infection and develop immunity. This is much less likely to happen in people
Chronic hepatitis is an
with HIV who are co-infected with hepatitis C. Many develop chronic hepatitis,
increasingly common
remain infectious to others and develop ongoing liver problems. With hepatitis
co-infection for many
C, around three-quarters of people infected become chronic carriers of the
virus and remain infectious to others.
people with HIV.
As described below on page 175, there are vaccinations that will prevent
you from geting hepatitis A and B infection. There is no vaccination available for
hepatitis C.
Antiviral treatments are available for both hepatitis B and C infection, but
treatment is less likely to work when you also have HIV. Treatment is more
successful the stronger your immune system is, so often the HIV is brought
under control first before hepatitis treatment is begun. There are many interactions between drugs to treat hepatitis and HIV, so make sure you see a doctor
with expertise in both conditions.
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HIV-RELATED
INFECTIONS & CANCERS
Tuberculosis (TB)
TB is a concern for people with HIV because it is so easily spread, especially in
places where people live close to each other, in poverty and without adequate
medical care.
TB usually infects the lungs, but it can also affect the bones, brain and
other organs in your body. TB is spread through the air when someone with
active TB coughs or sneezes. Diagnosis of TB is done by skin tests, tests of
your sputum (phlegm) and chest X-rays. There are effective treatments for TB,
TB is a concern for
but they need to be taken every day for many months. Missing doses, or
stopping before the full treatment period is over, can cause the TB infection to
people with HIV because
become drug-resistant and much more difficult to treat. People with HIV with a
it is so easily spread. TB
history of previously treated TB may have it reactivate (come back again) if their
is spread through the air
when someone with TB
coughs or sneezes.
immune system weakens.
Herpes infections
Herpes is a family of viruses that includes:
• Herpes simplex, which causes cold sores on the mouth or painful sores
on the genitals.
• Varicella-zoster, which initially causes chicken pox and when reactivated
causes painful sores called shingles anywhere on the skin.
Herpes infections are common and are often transmitted by physical contact
and sex. Usually, the immune system keeps herpes infection under control until
something like stress or a high fever brings the sores out in an outbreak lasting
seven to 10 days or longer. The lower your CD4+ cell count, the more frequent
the outbreaks may be. They may also last longer.
People with HIV with extremely weak immune systems (CD4+ cell counts
less than 100 cells/mm3) are at risk for herpes infections all over the body
(disseminated herpes) or in the brain (herpes encephalitis). People with frequent
herpes outbreaks (even with normal CD4+ levels), or people at risk for more
serious herpes infections, can take antiviral drugs—usually valacyclovir or similar
drugs—to keep the herpes virus suppressed.
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Fungal infections
Fungal or yeast infections can happen whether you are HIV-positive or not.
Women get vaginal yeast infections, and men and women can get athlete’s
foot or fungal infections on the skin or nails. The more weakened your immune
system is, the more this can be a problem.
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HIV-RELATED
INFECTIONS & CANCERS
Even people with relatively good CD4+ cell counts can get a fungal infection
in the mouth or vagina called candidiasis or thrush. Antifungal creams, pills
and vaginal suppositories are available to treat these problems, and probiotic
supplements or yoghurts with friendly bacteria may also help. Watch your diet
because the more sugar you eat, the more susceptible you are to fungus,
which loves sugar.
Sexually transmitted infections
Some of the infections discussed above can be passed on in many ways,
including through sex. Some other bacterial infections, like chlamydia, gonorrhea,
Usually, the immune
syphilis and HPV, are virtually always transmitted sexually. For more information
system keeps herpes
about sexually transmitted infections (see Chapter 7, Your sexual health).
infection under control
until something like
Other infections
stress or a high fever
For people with HIV, even minor infections can have serious consequences.
brings the sores out in
Infections can activate your immune system and increase the chance of HIV
an outbreak.
replication. There are actions you can take to prevent infections. Many of these
are common-sense practices like washing your hands often and well, getting
plenty of rest and avoiding other people who have colds or the flu. Some other
things to consider are discussed below.
Your water supply
Most city water supplies are tested and purified to ensure they are free of infectious organisms (germs). If you get your water from a well or an untreated water
source, you should have it tested for impurities and/or drink only boiled or
bottled water. Water-borne infections like Cryptosporidium, E. coli and Giardia
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cause diarrhea and severe illness, especially in people with HIV. You should
take precautions when travelling to parts of the world where outbreaks of cholera,
Cryptosporidium, E. coli and hepatitis A can be passed on through water.
HIV-RELATED
INFECTIONS & CANCERS
The food you eat
Avoiding contaminated food is also an important way of preventing infections,
such as E. coli, Salmonella and Listeria. You can avoid many infections—both
mild and potentially serious—by:
• making sure that your hands and the surfaces that you are preparing the
food on are clean;
• ensuring that meat and seafood is thoroughly cooked;
• carefully peeling or washing fruits and vegetables;
• avoiding foods that are past their “best before” dates or are spoiled;
• keeping raw meat, poultry and seafood separate from ready-to-eat
foods such as fruits or salads and keeping raw meat, poultry and
seafood separate from cooked foods. This includes paying attention
that you don’t reuse your cutting board for ready-to-eat foods after it
has been used for raw meat or seafood;
• not letting food sit out at room temperature for long if it is prone to
spoiling. Keep hot things hot and cold things cold;
• paying attention to warnings about food contamination.
Your pets
Pets are very important to some people with HIV and offer many benefits; however, some people with HIV are vulnerable to infections from pets. There is no
reason you should have to avoid having a pet if you are HIV-positive. But do
take care when handling pets and their waste. For example, when changing
your cat’s litter you should wear gloves and avoid breathing in the dust, which
can transmit toxoplasmosis. Also, always wash your hands after handling any
animal’s waste.
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Vaccinations
Vaccines stimulate your immune system to develop resistance to an infection,
without causing illness themselves. Your doctor should ensure you have had all
your childhood vaccinations for infections such as measles and mumps, and
keep you up to date with vaccinations for tetanus and pneumococcal pneumonia.
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HIV-RELATED
INFECTIONS & CANCERS
People with HIV should consider vaccination for hepatitis A and B, which
involves two or three injections over a six-month period. Unfortunately, there is
no vaccination available for hepatitis C.
VACCINATION RECOMMENDATIONS: Vaccine recommendations
are based on the protective benefit of the vaccine, versus any possible risk to people with
weakened immune systems. You should discuss vaccinations carefully with your doctor
(like all medical procedures); these are some of the general guidelines for people with HIV:
CONDITION
VACCINATION
GIVEN AS
Measles, mumps
& rubella
Should be given in childhood.
Probably safe for HIV-positive
adults except those with very
low CD4+ cell counts.
A single injection at around age
1, with a booster at age 4 to 5.
Pneumococcal
pneumonia
Should be given at least once
for all people with HIV. Consider
revaccinating after five years.
A single injection (Pneumovax).
Hepatitis A and B
Should be considered.
Two or three injections over
a six-month period.
HPV
Has not been evaluated in
HIV-positive women or in men
of any HIV status.
A series of injections, preferably
in teenage girls before they
become sexually active.
Influenza
Recommended annually for all
people with HIV.
One shot every year, in the fall.
These and other live vaccines
should generally be avoided by
people with HIV. Some may be
appropriate in those with higher
CD4+ cell counts.
Not generally given to people
with HIV.
Oral: typhoid, polio,
Injectable: varicella,
BCG vaccine for TB,
smallpox, cholera
Your doctor should
ensure you have had
all your childhood
vaccinations for
infections such as
measles and mumps,
Most doctors recommend that people with HIV get the flu vaccine every
year in autumn for prevention of the influenza virus. There is an oral vaccination
and keep you up to
date with vaccinations
for tetanus and
pneumococcal pneumonia.
available for cholera and E. coli that will prevent traveller’s diarrhea, and this
should be considered for anyone travelling to developing parts of the world.
HPV vaccination is also available.
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INFECTIONS & CANCERS
Unfortunately, there is some evidence that people with HIV don’t always
get the full effect from a vaccination, and some people need higher vaccine
doses or booster shots. The vaccine for measles, mumps and rubella should
be avoided if your CD4+ cell count is too low. Other live vaccines, like varicella,
oral typhoid, oral polio and BCG for TB, should be avoided by all people with
HIV because they are made from live virus and may cause serious illness in
people with HIV.
With a weakened
immune system, people
Cancers
Cancer is the abnormal and uncontrolled growth of cells in different parts of the
with HIV can become
body. These cancerous growths then destroy healthy cells and cause serious
more vulnerable to
illness. A normally functioning immune system acts to suppress this abnormal
certain types of cancer.
Cancers seem to be more
common in people with
HIV even when their
growth of cells. With a weakened immune system, people with HIV can
become more vulnerable to certain types of cancer.
Some of these cancers occur only when the immune system is weakened.
Other cancers seem to be more common in people with HIV even when their
immune system is relatively healthy. Researchers do not know whether this is
because of subtle changes to the immune system, effects of anti-HIV drugs,
immune system is
or just because people with HIV are living longer and reaching the age when
relatively healthy.
people without HIV are also at higher risk of cancer.
Kaposi’s sarcoma
Kaposi’s sarcoma (KS), a rare form of skin cancer, is caused by a member of
the herpes virus family and can be life-threatening. It causes purple lesions on
the skin that look like bruises. Although slow growing, if it spreads to internal
organs it can lead to illness and death. In the early days of HIV, it was quite
common in people living with HIV. When HAART was introduced, KS became
uncommon and now only occurs in people with very weak immune systems.
Non-Hodgkin’s lymphoma
When the cells in the lymph nodes become cancerous, this is called lymphoma.
The non-Hodgkin’s type of lymphoma (NHL) is more common in people with
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HIV. The symptoms of NHL may include persistently swollen lymph glands,
fevers, chills and sweats and weight loss. In the case of central nervous system
lymphoma, the symptoms are often headaches and seizures.
Diagnosis of lymphoma, like many cancers, is done by biopsy where a
sample of tissue from a swollen lymph node is examined under the microscope
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HIV-RELATED
INFECTIONS & CANCERS
for evidence of abnormal cells. In the event of central nervous system lymphoma,
the diagnosis is made by examining cerebrospinal fluid tapped from the spine.
Lymphoma is usually treated by chemotherapy, where powerful anti-cancer
drugs are injected into the vein on a regular basis, and/or radiation therapy
where high-powered X-rays are directed at the cancer cells. If you notice per-
All women should have
sistently swollen lymph glands (or nodes) anywhere in your body, you should
annual Pap tests to
alert your doctor.
look for dysplasia.
Cervical cancer
The cervix is the opening of the uterus (womb) inside a women’s vagina.
Sometimes abnormal cells can start to grow on the cervix, usually as a result of
HPV infection (see Chapter 7, Your sexual health). Over time, these abnormal
cell growths can become a pre-cancerous condition called cervical dysplasia.
If dysplasia is not found and treated, it can become cancer.
To prevent this, all women should have annual Pap tests to look for dysplasia
from a small scraping of cells from the cervix. Women with a history of genital
warts or cigarette smoking should have Pap tests more frequently. If dysplasia
is found, it is usually treated with a laser in a procedure called colposcopy.
The HPV vaccine will protect women from some, but not all, strains of HPV
and so it is hoped it will prevent some cases of cervical cancer. However, this
vaccine is effective only if it is given before exposure to the HPV strains the
vaccine targets.
Anal cancer
Cancer in the anal canal of men and women is similar to cervical cancer. It is
also usually caused by infection with HPV and, like cervical cancer, develops
over time from dysplasia to cancer. Risk factors include a history of anal sex
and/or genital warts. Both men and women with HIV are thought to be more
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INFECTIONS & CANCERS
vulnerable to this form of cancer. Anal Pap tests are not routinely available
throughout Canada, but ask your doctor if testing is available in your area.
Other cancers
There are many other forms of cancers that people with HIV are thought to
be at slightly higher risk for, even without immune suppression. These include
Hodgkin’s lymphoma, lung cancer, skin cancer, vaginal cancer in women and
testicular and prostate cancer in men. Fortunately, these cancers are not common and can often be successfully treated if they do occur in people with HIV
who maintain healthy immune systems with HAART.
Resources
HIV and Hepatitis C Co-infection
Brochure of frequently asked questions and answers about viral load tests
for people with HIV
Hepatitis C
Comprehensive information about the prevention and treatment of
hepatitis C (www.hepcinfo.ca)
Plain and Simple Factsheets on co-infections, cancers and other conditions
Available in multiple languages
In-Depth Factsheets on co-infections, cancers and other conditions
Comprehensive information for people living with HIV and their
care providers
The Positive Side
Health and wellness magazine contains articles about infections and
related conditions, such as:
• Infections and bugs and germs… oh my!
• Double duty: living with HIV and HCV
Look under Symptoms, Illnesses and Side Effects in the e-zine index
(www.positiveside.ca)
TreatmentUpdate and CATIE News
News bulletins about cutting-edge developments in HIV research and treatment
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Canadian Food Inspection Agency
This federal government agency, responsible for food safety in Canada,
posts up-to-date information on contaminated food products
(http://www.inspection.gc.ca)
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INFECTIONS & CANCERS
Many other relevant resources can be accessed on CATIE’s website
(www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
NOTES
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NOTES
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INFECTIONS & CANCERS
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13
Hospital stays
This chapter tells you what you need to know about the
hospital environment so that you can be comfortable
and confident there. It describes what you need to
do to prepare for your hospital stay, how to be the
leader and decision maker in your hospital care, and
how to manage the transition back to home once you
are discharged. At the end of the chapter, there is
information on how to prepare for health emergencies
and possible alternatives to a hospital admission.
About the author
Deborah Randall-Wood is a registered nurse with
specialty certification in HIV/AIDS nursing (ACRN) and
in Hospice/Palliative Care Nursing (CHPCN). She
CONTENTS
• The hospital environment
• Preparing to go to
the hospital
• Being admitted
• Communication is the key
• Going home
• Instead of going to
a hospital
started working with people living with HIV more than
20 years ago in the first team of nurses hired by Casey House Hospice
when it opened in 1988, and has been involved in HIV/AIDS care ever
since. She is past co-chair of the Ontario AIDS Network, past chair of
the AIDS Committee of Durham and past president of the Canadian
Association of Nurses in HIV/AIDS Care (CANAC). Deborah manages the
oncology and neurology rehabilitation unit at St. John’s Rehab Hospital
and is a member of the Board of Directors at the Toronto People With
AIDS Foundation.
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HOSPITAL STAYS
There may be times in the course of living with HIV when you need to be in a
hospital. This could be a brief visit—a few hours in an emergency department,
for example—or a stay that lasts days or weeks. In some situations, you may
require an even longer stay in a specialized unit or facility.
Hospitals are there to help you manage health emergencies that can’t
be addressed at home or by your usual healthcare providers. Hospitals also
provide the specialized care and intensive treatments or assessments you may
need from time to time as you manage your health.
The hospital environment
A hospital can be a confusing place, even to people who work or volunteer
there, so don’t be surprised if it appears confusing to you, too. It will get more
familiar the longer you are there. There are hundreds, perhaps thousands,
of people who work there in many different areas. You will encounter many
of these people during your stay, but many others will be working behind
the scenes.
Everyone working in a hospital is trained to do his or her job, and all
If you are not sure
employees report to someone who supervises their work. Staff and volunteers
who someone is or what
in hospitals wear name tags, which usually show their picture, first name and
he or she does, it is
areas where they work. They may also wear uniforms, depending on their role
fine to ask.
or the policies of the hospital. If you are not sure who someone is or what he or
she does, it is fine to ask.
Hospitals are busy places that usually run 24 hours a day, seven days a
week. However, some parts of hospitals, such as out-patient clinics or staff
offices, may only be open during certain hours or on an as-needed basis.
There are many processes in place to ensure that hospitals run smoothly.
These may not make sense to you, so ask if you do not understand the reason
something is happening. You are allowed and expected to ask questions, and
you should expect to have your questions addressed.
A hospital may be located in one or many buildings. These may be located
in one place or spread out over many sites. There are maps near every
entrance to help you get around. Signs for frequently used areas are usually
large and easy to see.
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Arrive early if you can. It’s good to take time to find your way around, especially the first time you are there. Don’t be afraid to ask for help with directions.
Hospitals have information desks near the main entrance to help with this,
although there will be times when no one is at the desk. There will always be
13
HOSPITAL STAYS
signs on the walls and sometimes lines on the floor to guide you.
Most activities in a hospital are done on a priority basis. This means that
those people who are sickest get looked after first. Your procedure may be
postponed to allow for someone in more critical condition.
Expect the unexpected
If you experience an unexpected health crisis, you may need to go to
hospital suddenly. You can prepare for this ahead of time. The most
important thing is for people to know essential information about you.
The following information should be either with you, or easy for people
to find, at all times:
• your own name, phone number and address (you’d be surprised how
many people go around without this);
• an up-to-date list of all your drugs;
• names of next of kin or people to contact in an emergency, and how
to reach them;
• a note indicating any physical limitations (such as impaired hearing,
or need to use a cane);
• your health card;
• special instructions related to religious or cultural customs.
This information can all be written down on a sheet of paper titled “In an
Emergency” and folded in your wallet. Check this monthly to make sure
it is still up to date. It may also be a good idea to let someone you trust
have a key to your home so that he or she can look after things for you.
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Preparing to go to the hospital
There are ways to prepare for being in hospital and to help other people
prepare for you to be away from home. Make a list of your weekly activities
and determine what needs to be done while you are away. (This could include
things like looking after your pets, watering your plants, picking up your mail or
paying your rent.) Then decide who can do these things for you. Talk to your
friends and family to figure out what you can realistically expect from them. If
possible, try to do this before you actually need to. Then you’ll know that the
Make a list of your
weekly activities and
people you are counting on can actually do the things you need.
Sometimes, one person will be able to look after everything. In other situations, it may be better to divide the duties among a number of people. Try to
determine what needs to
have a back-up plan in case your first choices do not work out. This way, when
be done by others while
you need to put your plans in action, everything will be in place.
you are in hospital.
Make a list of the things you would want to take with you to the hospital.
You may feel anxious when you are told you need to go there, so having a list
prepared ahead of time will help you.
Things can sometimes get lost in hospitals, so do not take anything you
would hate to lose. Leave your valuables at home or with someone you trust.
Most hospitals have Web sites with a section for people who are going to be
Most hospitals have
admitted to the hospital. This should tell you what you are allowed to take. Or
Web sites with a section
phone the hospital and ask to speak to someone about what you may take
for people who are going
with you.
to be admitted to the
hospital. This should tell
you what you are
allowed to take.
Being admitted
The process of being admitted can be time consuming. If possible, bring
someone with you for company and support. Bring a snack in case you get
hungry if you have to wait, and a book in case you get bored.
If your admission is planned, you’ll likely have a pre-admission appointment
prior to the day you are admitted to gather essential information, like which
drugs you are on. This appointment may also involve blood work or other
diagnostic tests. You will be given information about where to go on the day
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you are admitted and any special instructions you may need. (For example,
you may be told not to eat after midnight.) This is a good time to ask questions
about anything you are unsure of and to provide information on any cultural,
religious or spiritual requirements you may have. Also mention any physical
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limitations or disabilities, even if these seem obvious to you. The hospital staff
will try to meet your needs and will let you know if there is anything they cannot
do. If something important cannot be accommodated, ask to talk to someone
Bring a paper and pen
who can offer alternatives.
Things to take with you to the hospital
and write down the
answers to your
• toothbrush
questions, including the
• toothpaste
name of the person you
• hairbrush or comb
• shaving equipment
are talking to. There is a
• soap, shampoo, deodorant, moisturizer
lot of information to take
• tissues
• two sets of loose-fitting and easy-to-clean casual clothes such as sweats
in, and even people
experienced with this
• underwear
• pyjamas
process can forget some
• housecoat
• slippers with non-skid soles
of the details.
• writing materials or laptop
• things to read and keep you occupied
• important phone numbers
• your current drugs
• a couple of copies of the list of the drugs you are taking
Bring a paper and pen and write down the answers to your questions,
including the name of the person you are talking to. There is a lot of information
to take in, and even people experienced with this process can forget some
of the details. If you were admitted through the emergency department, all
the necessary tests and instructions will take place as they are needed.
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Once in hospital, you will be assigned a private room (with one bed), a
semi-private room (with two beds) or a ward (three or more beds). This depends
on availability, insurance coverage or your clinical needs.
Hospitals have many different types of care providers (referred to as multidisciplinary or interdisciplinary care teams) that work together to look after you.
Many of these care providers are described in Chapter 3 (Your healthcare team).
The care providers' responsibilities can vary from hospital to hospital, so it is
important to ask “what do you do?” or “what can you help me with?” when
You need to have
clear and frequent
communication with
those who are caring
you are introduced to someone involved in your care. Again, it is fine to write
this all down so you won’t forget. At some hospitals, usually referred to as
teaching hospitals, medical students will be involved in your care as part of their
training. However, you have the right to decide whether you want students to
be involved in your care. Let one of your care providers know if you don’t want
students to be involved.
for you.
Communication is the key
As mentioned above, you are not only allowed but expected to ask questions
about what is happening to you, and you can expect to have your questions
answered. Confidentiality and privacy policies will prevent your private health
It is also important
that you communicate
information from being shared with anyone who is not important to your care.
You need to have clear and frequent communication with those who are
caring for you. Let them know about your concerns. You have to identify what
with family and friends.
your priorities are, because that is what your care providers are going to be
Let them know clearly
doing on your behalf. You want to make sure that your priorities and theirs
and directly what you
need from them.
match. If not, insist that they spend time talking with you so that you can get
some agreement on what is going to be happening to you and why.
It is also important that you communicate with family and friends. Let them
know clearly and directly what you need from them. Sometimes, people are so
concerned for you that they lose track of what you really need. They may be
unaware of how exhausting visits can be, or how the hospital schedules and routines work. Tell them instructions like “I’m sleepy… 10-minute visits only, please”
or “I’m getting my beauty rest.” Or, write these down and stick them on the wall
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over your bed or on your door. Most visitors will be happy for the directions.
If anything happens that you are not happy with, tell someone. Try to
speak to the person closest to the problem first, but if you can’t do that, tell
someone else. Every unit in a hospital has a unit manager, head nurse, charge
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nurse or supervisor that you can talk to. Hospitals also have an ombudsperson.
This is a patient advocate with whom you can speak if you have a problem. If
there is no ombudsman, the social worker on your unit will be able to help you
identify who you should talk to. It is helpful to be specific, provide details and
talk about what you would rather have had happen. If something is wrong,
being silent will not help you resolve the problem, nor will it help the hospital
to improve. Speak up if you can. If you feel you can’t, a friend my be able to
speak on your behalf.
Going home
At some point during your hospital stay, you’ll be told that it is time for you to
go home. Usually this is planned a few days in advance. Plan for your discharge
in the same way that you planned for your admission. Make a list of all the
Look at all the things
things that are being done for you in the hospital. Then identify which things
you will need to do at
need to continue when you are home and who will be doing these things. It
home and think about
may be you, a visiting nurse, social worker, rehabilitation therapist or someone
else involved in your care. If you don’t know who will be doing it, ask. Hospital
staff called discharge planners can help you prepare for going home.
how you will be able to
get these things done.
(Sometimes social workers do this, too.)
Back when you were preparing to be admitted, you made out a list of jobs
and duties that needed looking after at home. Now, when you're preparing to
go back home, is a good time to look over that list again. Look at all the things
you will need to do at home and think about how you will be able to get these
things done. Before you are discharged, hospital staff may be able to arrange
for some kinds of homecare services. These may include certain types of home
clinical care, such as changing dressings, rehabilitation exercises or accessing
funding for some drugs. However, these services only provide basic assistance
related to your physical care. Your friends or family members may need to help
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you for a while, doing laundry, cooking or grocery shopping. Be sure to check
in with the people who are helping you and see how long they will be able to
help. Open, direct discussions about what you need and what others can
provide is essential.
Instead of going to a hospital
If you are told that you need to go into hospital, you may want to ask if there is
any other way to accomplish what that hospital would do. If it is an emergency,
this may not be possible. But, in some other cases, a continuing care facility
may be a better choice than an acute care hospital. A continuing care facility
is like a hospital, but for people who require longer stays with some rehabilitation therapy.
Some hospices provide supportive care if you need more help that can
be given at home. Hospices are places where people who are very sick can
receive 24-hour care. Nurses, with the help of volunteers, do the caregiving.
Space is usually limited in hospices and there are often waiting lists. Residential
hospices tend to be located in towns and cities and so may not be available in
rural areas.
It is important to ask your care providers if there are other choices. The
decision is always yours.
Resources
Relevant resources can be accessed on CATIE’s website (www.catie.ca),
through the CATIE Ordering Centre (www.orders.catie.ca) or by calling CATIE
at 1-800-263-1638.
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HOSPITAL STAYS
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14
CONTENTS
HIV and
rehabilitation
The impact of living with HIV disease can make certain
everyday tasks and activities difficult. This chapter
discusses rehabilitation services for people living with
HIV and offers some suggestions about how to lessen
the physical, mental, emotional and social challenges of
living with this disease.
About the author
The Canadian Working Group on HIV and Rehabilitation
is a national, charitable organization that responds to
• Living with the challenges
of HIV
• What is rehabilitation?
• How can rehabilitation
services help me?
• The basic components of a
rehabilitation program
• Emerging issues in HIV
and rehabilitation
• Your role on
the rehabilitation
healthcare team
the rehabilitation needs of people living with HIV/AIDS.
The working group bridges the traditionally separate
worlds of HIV, disability and rehabilitation. Through research, education
and cross-sector partnerships, the group is working to improve the lives
of people with HIV.
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Living with the challenges of HIV
Do you or people you know have health-related problems due to living with
HIV or side effects of HIV treatment? Perhaps you have tingling or numbness
in your feet, pain in your legs or arms, or feel weak and tired when you try to
stand, climb stairs or walk for any length of time. Maybe you can’t feel the
temperature of the water in the bathtub or shower.
Are you finding it harder to concentrate or focus on your activities the way
you used to, forgetting things more easily, and/or finding it more difficult to work
or visit with friends?
Many of these problems are described in Chapter 11, Side effects and
symptoms. Maybe they don’t happen all the time, but perhaps they are happening more often than before. Some people may say, “Oh, I’m just getting
Perhaps there are
activities you can no
longer participate in or
which you can no
longer do.
older,” (which is true for all of us) but it also may be that the impacts of living
with HIV are making it more difficult to do the things you want to do.
It doesn’t have to be this way; there are people and supports that can help
you. This chapter about rehabilitation will suggest ways to reduce many of the
health- and life-related challenges of living with HIV.
You know better than anyone that living with HIV presents many challenges.
These may include challenges to your physical, mental, emotional or social
health, and may be due to HIV infection itself or its associated treatments.
Perhaps there are activities you can no longer participate in or which you can
no longer do.
You may not think of these as disabilities. Most people think of a disability
as a permanent physical condition, such as a spinal cord injury that results in
paralysis. But, in the world of rehabilitation, disability is a much broader con-
A disability is a
health-related challenge
that interferes with
meaningful, active living.
cept. A disability is a health-related challenge that interferes with meaningful,
active living.
Disabilities fall into three main categories:
• Physical or mental challenges: for example, symptoms that include pain,
fatigue, diarrhea, numbness or tingling, reduced sex drive (libido),
decreased memory, changes in body fat distribution and speech or
language difficulties.
• Difficulties with day-to-day activities: for example, walking, climbing stairs,
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carrying groceries, standing for a long period of time or taking a bath.
• Social participation restrictions: for example, difficulty working, participating
in social activities or relationships.
While some people living with HIV have chronic (long-term) disabilities, most
disabilities related to HIV are episodic—they come and go. You may have
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HIV AND
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experienced this—periods of wellness and then periods of illness. These
episodes may occur daily (you have good days and bad days), or include major
health changes (such as an infection that results in hospitalization). Often, you
may have no way of knowing how you will feel from one day or week to the
next, what kinds of health challenges you’ll experience, or how long they will
Most disabilities
last. The uncertainty of not knowing when an episode might arise and how
related to HIV are
severe that episode might be is a challenge that is commonly faced by people
living with HIV.
In addition, since anti-HIV drugs are helping people to live longer, you
episodic—they come
and go.
may begin to experience common diseases of aging such as heart disease,
diabetes, cognitive changes and arthritis. No matter whether these other
conditions are caused by HIV, your anti-HIV drugs or the aging process, they
can still compound the physical and mental challenges of living with HIV.
What is rehabilitation?
Rehabilitation is any service or activity that can address or prevent the healthrelated challenges (or disabilities) that people living with HIV might face.
Rehabilitation is an important component of the care for many common diseases
such as arthritis, heart disease and diabetes. In these diseases, rehabilitation
is not only used as a treatment, but also to prevent new conditions from developing or current ones from worsening. Research has shown that rehabilitation
interventions like stress management, maintaining a healthy weight and regular
exercise can prevent or reduce the severity of many diseases. So it makes
sense that rehabilitation can be helpful for people living with HIV at any stage,
in periods of both wellness and illness.
But rehabilitation is about much more than diet, weight management and
exercise. Rehabilitation is about helping people to manage their health problems.
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Rehabilitation is about
helping people to
manage their health
problems. It also
means providing support
so that people can
be included in their
communities while
continuing to live
as independently
as possible.
It also means providing support so that people can be included in their communities while continuing to live as independently as possible. Rehabilitation
services can include physiotherapy, occupational therapy or speech-language
therapy, as well as complementary or alternative therapies such as acupuncture,
massage therapy and counselling.
How can rehabilitation
services help me?
To address the different types of health-related challenges you may face, there
are several different types of rehabilitation and rehabilitation providers.
Physical rehabilitation
Some of the challenges you face may be caused by physical changes in
your body.
A physical therapist (physiotherapist) can work with you to develop
strategies that can help you with:
• managing or reducing pain, numbness or tingling sensations;
• feeling less tired;
• strengthening your muscles;
• improving movement in your joints;
• maintaining or improving your flexibility, balance and co-ordination;
• building your activity tolerance;
• learning to use a walker if you need one.
An occupational therapist can help you learn to manage your daily activities
and make adjustments in your home or workplace to allow for any physical
changes you are experiencing. This could include:
• suggesting changes in your living or working space to accommodate
any physical limitations you have;
• organizing your activities to assist with focus and memory;
• suggesting ways of organizing your days to conserve your energy;
• showing you how to use helpful aids or equipment;
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• strategizing around complex medication schedules;
• determining how your family or other services in the community can
support you.
A speech–language pathologist (speech therapist) can:
• help you with issues affecting communication and swallowing;
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HIV AND
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• help you to maximize oral and written communication skills for staying at
or returning to work (for example, reading, writing and public speaking).
A physiatrist is a doctor who specializes in physical medicine and rehabilitation.
A physiatrist can help you with:
• regaining movement or physical functioning you have lost;
• chronic pain;
• accessing any special tests or procedures.
Questions for your healthcare team
This list covers some of the health challenges that rehabilitation services
can help with. If you are experiencing any of the health challenges
below and are not sure how to answer any of the following questions,
speak with your healthcare team to learn more:
• What can I do to deal with fatigue, pain and other physical symptoms?
• Where can I get support to help me with:
• personal care and household chores?
• the impact of HIV on my financial situation?
• my feelings about having HIV?
• the way my family and friends respond to HIV?
• the way my partner and I deal with my HIV
• What kinds of exercises will help me?
• Are there any assistive devices or types of equipment that could
help me?
• Where can I get more information about HIV and how to manage it?
• Do I understand the impact of HIV on my employment, income
support and extended healthcare benefits?
• Should I talk with my employer and colleagues at work about
HIV—and how?
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Psychosocial rehabilitation and support
People living with HIV can experience stress, anxiety, depression, changes in
sleep and appetite and reduced sex drive (libido). Self-esteem and relationships
also can be affected.
Psychiatrists, psychologists, psychotherapists, occupational therapists and
mental health counsellors can help by:
• providing therapy or counselling to help you cope with the emotional
impact of HIV;
• suggesting strategies and techniques to relieve anxiety and stress;
• helping you reduce feelings of stress and isolation;
• connecting you with peer-support groups;
• improving your self-esteem, maintaining personal relationships and
support networks;
• prescribing drugs, if necessary (only doctors and psychiatrists can
do this).
Social supports, such as friends, family, cultural and other community organizations, can also provide both emotional and practical support.
Some people with HIV also find that complementary or alternative therapies
are helpful to address the many physical, mental or emotional challenges they
face. These include:
• acupuncture;
• massage therapy;
• homeopathy;
• naturopathy;
• aromatherapy;
• chiropractic treatments;
• yoga, meditation, Tai Chi.
Some of these supports and therapies are discussed in more detail in Chapter
3, Your healthcare team, Chapter 5, Complementary and alternative therapies,
and Chapter 6, Your emotional health.
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Work-related issues
Staying in the workforce, or returning to the workforce after a period of illness,
is often complicated if you have HIV.
• You may be concerned about how you will be treated if people find out
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you are HIV-positive.
• You may not know if or when to tell your employer about your HIV status.
• You may not want to leave your anti-HIV drugs where they might be
found at work.
• You may not have the stamina to work full time, and your workplace
might not be able to accommodate part-time hours.
Rehabilitation profes-
If you have been on long-term disability benefits and return to work, you may
sionals may work alone,
be concerned about income or health benefits if you get sick again.
but are commonly part of
Occupational therapists, vocational rehabilitation programs and some AIDS
service organizations provide:
• counselling about income support, health and disability benefits;
• information about your legal rights;
• advocacy on your behalf;
• job search and interview support;
• training and employment counselling.
Rehabilitation professionals may work alone, but are commonly part of a larger
a larger team, including
physicians, nurses,
social workers,
dieticians, pharmacists,
substance use counsellors
and community workers.
team, including physicians, nurses, social workers, dieticians, pharmacists,
substance use counsellors and community workers. It is important to talk to
your doctor about all of the challenges you experience in your day-to-day life—
physical, mental, emotional, financial or work-related. Many of these challenges
can be addressed by various types of rehabilitation or support.
The basic components
of a rehabilitation program
In rehabilitation, the person living with HIV is a central part of the process.
Therefore, you will be encouraged to play an active role in your care.
Rehabilitation is most effective when it includes a team approach that includes
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you, your primary caregivers, rehabilitation providers, those who pay for your
rehabilitation services (for example, your insurance program or company) and
other agencies you may be involved with.
When you are referred to a rehabilitation service, you can expect
the following:
• a baseline assessment of your areas of concern;
• a review of available information (for example, medical notes) from other
caregivers—primary care or HIV community care providers;
• establishment of short- and long-term rehabilitation goals;
• an individualized rehabilitation plan to achieve those goals;
• monitoring of your progress towards your goals;
• referral to other services and agencies as needed or identified;
• discharge planning and co-ordination of services.
You may also be asked to evaluate the rehabilitation services you received.
Where are rehabilitation services provided?
The place where services are provided will depend on the services available,
the medical stability of your illness and your desired and expected outcomes.
Some of the more common settings are:
• hospitals;
• outpatient centres and clinics;
• the private practices of healthcare professionals;
• local AIDS service organizations;
• your own home;
• hospices;
• work settings;
• schools;
• wellness centres;
• community parks and recreation programs (for example, YMCAs);
• public health departments.
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being paid for by your province’s health plan or private insurance. If the service
14
is provided by your local AIDS service organization, you probably won’t need a
REHABILITATION
How can I access rehabilitation services?
You will need an assessment and referral by a doctor to access many rehabilitation services. This is especially important if the rehabilitation services are
HIV AND
referral, and it may be free.
Who pays for rehabilitation services?
The types of rehabilitation services paid for by public (government) health plans
in Canada vary from province to province. Private (employer or individual) health
You will need an
insurance plans often cover some rehabilitation services, but there is usually a
assessment and
yearly maximum or a maximum per treatment, which may mean that you have
referral by a doctor
to pay some of the costs with the insurance provider.
You will need to talk to your doctor, rehabilitation provider, human resource
department, insurance company and/or local AIDS service organization to find
to access many
rehabilitation services.
out what is covered for you. Some of the possibilities include:
Provincial health plan If you receive rehabilitation services while you are in
hospital, they are covered by your provincial health plan. If you continue to
receive rehabilitation from the hospital in an ambulatory or outpatient clinic after
you leave, it may also be covered.
Private insurers Some rehabilitation services may be covered by your
employer’s group health insurance plan (if you are still working or on disability
benefits) or by private health insurance you purchased on your own. However,
even if you have a plan through your employer, there are usually yearly maximums
and sometimes only a portion of the cost is covered. Check your plan.
Sliding fee scales Some rehabilitation providers have a sliding fee scale for
people without insurance. Sliding scale means that the fee is based on the
individual’s ability to pay.
AIDS service organizations Local AIDS service organizations may provide
some rehabilitation services for free.
Despite the importance of rehabilitation for people living with HIV and the
increasing number of persons who may require rehabilitation, access to rehabilitation services continues to be a challenge across Canada. For example, some
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provinces have removed certain rehabilitation services from public coverage.
This can create a significant burden for those individuals who can only access
rehabilitation services through publicly funded channels.
HIV AND
REHABILITATION
Emerging issues in HIV
and rehabilitation
Among the many emerging issues relating to HIV and rehabilitation, a few have
been identified as particularly important to the overall health of people with HIV:
• income support and work;
• rehabilitation strategies you can start yourself;
• living with HIV and other conditions;
• managing your anti-HIV drugs and their side effects.
Income support and work
Many people living with HIV find it difficult to work or to work full time. If your
health status is changing monthly or daily, work may not be possible for you
or it may be difficult to accommodate. Income security (having a reliable and
predictable source of income) is a major source of stress for many people living
with HIV. It can have a major impact on your health. Many people must rely on
health and disability benefits such as:
• employment insurance sickness benefits;
• long-term disability and extended health benefits (vision, dental,
prescription drugs, physiotherapy, etc.) provided by employee group
insurance plans;
• Canadian Pension Plan Disability Program;
• provincial disability and social assistance programs.
These benefits programs are described in detail in Chapter 20, Money matters.
Rules and definitions vary between programs. Your local AIDS service
organizations, occupational therapist or doctor may be able to provide you with
information, explain what benefits you are entitled to and help you fill out any
necessary forms. It is important to ask for this information and assistance. You
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have a right to this information; however, research has shown that many people
do not receive this information unless they ask about it.
Rehabilitation strategies you can start yourself
In addition to working with rehabilitation professionals, there are many important
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components of rehabilitation you can start yourself. These include regular
exercise, approaches for managing fatigue, such as energy conservation
(see the Five Ps of energy conservation) and strategies to help with changes
in your thinking and mental health.
In addition to working
with rehabilitation
Five Ps of energy conservation
If you have HIV, you may get tired easily. You can conserve or increase
your energy level by following the Five Ps of energy conservation.
1. Pacing Break large tasks into several smaller ones. Do some jobs
today and some another day.
2. Positioning Use correct posture and body positions while sitting,
professionals, there
are many important
components of
rehabilitation you can
start yourself.
standing, taking part in recreational or other activities—even sleeping.
Make sure beds, chairs, desks, tables and computer keyboards are
at a comfortable height.
3. Planning Make a list of things you have to do during the day. Plan
to do the most difficult tasks when you’re feeling your best. Keep the
work you need to do close by and organized.
4. Priority setting Do only what you decide is most important.
Eliminate less important things or ask someone to help you with them.
5. Problem solving Increase your energy by asking yourself:
• Is there an easier and better way of doing this? (Pushing instead
of pulling; using two hands instead of one?)
• Is there some device, such as an electrical appliance or piece of
equipment that can make this job easier?
• Do I really need to do this?
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Some people experience changes to their brain, which can affect their
thinking and their emotional state. You may find that your judgment, attention,
focus, motivation and ability to deal with emotional situations have changed.
You may also experience some form of depression, anxiety or difficulty coping
with the life changes resulting from your illness.
Rehabilitation strategies that can help you with these changes include:
• using verbal or written cues or memory aids such as making lists, using a
journal or calendar to help remember activities;
• developing a routine and structure to your time. For example, try to meet
with someone for support on a regular basis;
• developing healthy coping strategies to assist with life situations.
Research studies have shown that aerobic and resistive exercise training can
be safe and may be beneficial for people living with HIV who are medically
stable. While research has shown that exercise won’t boost your CD4+ cell
counts or lower viral loads, it will not harm the immune system or worsen virological status for people living with HIV who are medically stable. Before you
start to exercise, it is important to gear any exercise program to your physical
capabilities and personal goals. Be sure to talk with your doctor, physical
therapist or other healthcare provider to find out which program might be right
for you. See Chapter 4, Healthy living, for more information on exercise.
Research has shown that regular aerobic or resistance exercise can:
• improve your strength;
• improve your cardiovascular fitness;
• improve and maintain your mood;
• help you to maintain a healthy weight.
Recommended exercises and activities include activities that use large muscles,
such as those in your arms and legs. Rehabilitation professionals often recommend:
• exercising in water or swimming;
• walking;
• cycling;
• dancing.
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Work up to exercising for a total of at least 30 minutes, three to five times a
week. Regular exercise is the key to success, but you don’t have to do it all at
one time. Three 10-minute periods of exercise a day work just as well as one
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HIV AND
30-minute session.
Walking can help you to build strong bones and prevent osteoporosis.
REHABILITATION
Exercising with hand and ankle weights or weight machines can increase your
strength and reduce pain. Some people find it easier to exercise in warm water.
Many community recreation centres have warm water exercise programs. Pool
programs geared towards arthritis or osteoporosis may be especially beneficial
for persons living with HIV.
Living with HIV and other conditions
Many people with HIV will live a long time, thanks to new drug treatments.
However, this may put you at risk for developing other conditions associated
with aging, or other longer-term side effects of HIV treatments.
Additional conditions you may be faced with could include:
• musculoskeletal conditions, including joint problems (arthritis), muscle
problems and thinning of the bones (osteoporosis);
• metabolic and endocrine conditions, including diabetes and increased
cholesterol and triglycerides;
• cardiopulmonary system (heart and lungs) conditions. These conditions,
Rehabilitation can play
an important role in
the management of all
side effects.
for example, heart attacks and stroke, are a major cause of mortality for
people living with HIV;
• neurological conditions including neuropathy (nerve pain resulting in loss
of sensation or tingling) and cognitive difficulties (memory loss, difficulty
concentrating).
Rehabilitation can play an important role in the management of all these conditions. You may also be able to access rehabilitation services targeted specifically
to these conditions (for example, you may be able to access arthritis rehabilitation
therapy services if you have a diagnosis of arthritis in addition to HIV).
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Managing your anti-HIV drugs and their side effects
Several types of rehabilitation professionals can help you with the many aspects
of managing your anti-HIV drugs:
• speech–language pathologists can help you with problems in swallowing
your medications;
• occupational therapists or pharmacists can help you to develop strategies
to deal with complex drug regimens (for example, using pill boxes and
timers) and help you deal with the challenges of injectible HIV drugs;
• physical therapists can help you to deal with physical side effects of your
drugs, such as peripheral neuropathy (numbness and tingling) and fatigue.
See Chapter 11, Side effects and symptoms, for more information on how to
manage side effects that can be caused by anti-HIV drugs.
Your role on the rehabilitation
healthcare team
You are an important part of the rehabilitation team and you may have to ask
for these supports if your healthcare provider does not offer to connect you
to them. It is important to maintain an up-to-date personal health record (see
page 317) and to give this to your healthcare provider. Your personal health
record should include a list of:
• medical conditions and surgeries from childhood to the present;
• drugs, vitamins and herbal supplements you are now taking or have
taken in the past and their dosage;
• treatments you have had, and whether they were helpful or not.
When seeing a healthcare or rehabilitation provider, keep these things in mind:
• make notes with dates of any changes in your condition as well as any
side effects from drugs;
• list any other treatments you have had since your last appointment;
• bring your health notes to your appointment;
• bring a family member or friend with you if you need help to remember
the information discussed during your appointment;
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• be on time for your appointment. If you need to reschedule, phone the
office as far in advance as possible;
• tell your healthcare provider in advance if you may need a longer
appointment than usual to discuss questions about HIV or your treatment.
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HIV AND
REHABILITATION
Resources
The Canadian Working Group on HIV and Rehabilitation
Provides references for this chapter and links to a variety of resources and
organizations related to HIV and rehabilitation (www.hivandrehab.ca)
e-mail: [email protected]
Many other relevant resources can be accessed on CATIE’s website
(www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
NOTES
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HIV AND
REHABILITATION
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15
Women and HIV
While most of the chapters in Managing your health provide information to assist both men and women in living
with HIV disease, this chapter offers information specific
to HIV-positive women’s needs. In this chapter you can
find helpful information about how HIV and its treatments
affect women differently than men. You can also learn
about how HIV affects women throughout their life,
including tips on dating and disclosure and how to plan
or prevent pregnancy as well as manage menopause.
About the author
Shari Margolese has been involved as an active volun-
CONTENTS
• HIV in women in Canada
• How is HIV different for
women and men?
• Psychosocial issues for
women living with HIV
• Your healthcare team
• Gynecological care of
women with HIV
teer in the AIDS community since shortly after her own
HIV diagnosis in 1993. As a mother of an HIV-positive
child, her advocacy efforts have often focused on the
needs of the HIV-positive family and the rights of women living with HIV to
have children. Shari is currently co-principal investigator on several community-based research projects, including the development of a protocol
for fertility and pregnancy care for people living with HIV in Ontario.
Currently, Shari’s volunteer commitments include working with Voices
of Positive Women in Toronto, Blueprint for action on women & girls and
HIV in Canada, and ATHENA.
MANAGING YOUR HEALTH
• Pregnancy and HIV
• Birth control
• Menstruation and
menopause
• Dating, sex and
relationships
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HIV in women in Canada
If you are a woman living with HIV, you are not alone!
While few women were identified among the early cases of AIDS in
Canada, as the years have passed, the epidemic among women has grown.
The Public Health Agency of Canada reported that the proportion of women
infected with HIV increased dramatically over the 10-year period from 1996 to
Almost half of women
2006. The Public Health Agency of Canada has also estimated that almost
testing positive are
half of women testing positive are between 15 and 29 years of age. The risk
between 15 and 29
factors for the majority of new infections among women are heterosexual sex
and injection drug use. More that 11,000 women are currently living with HIV
years of age.
Some HIV-related
infections and diseases
impact women differently
than men. Some are
specific to women, such
as vaginal candidiasis
and cervical cancer.
in Canada.
How is HIV different
for women and men?
Though many questions about how HIV disease affects women remain
unanswered, some information exists about how HIV affects men and
women differently.
Some HIV-related infections and diseases impact women differently than
men. Some are specific to women, such as vaginal candidiasis and cervical
cancer. Women with HIV are also more likely than men to develop bacterial
pneumonia and recurrent herpes simplex infections. Women are less likely to
develop Kaposi’s sarcoma, an HIV-related infection characterized by purplish
lesions on the skin (see Chapter 12, HIV infections and related conditions).
Fortunately, effective anti-HIV treatment has made these infections much less
common for all people living with HIV.
Drug side effects can affect women with HIV differently than men. For
example, women are more likely to experience side effects such as rash and
severe allergic (hypersensitivity) reactions to the class of anti-HIV drugs called
non-nukes (see Chapter 10, Treatments). Both men and women with HIV can
have body shape changes called lipodystrophy and lipoatrophy. Women are
most likely to see fat gain in the breasts and stomach (see Chapter 11, Side
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effects and symptoms). Women are also more likely than men to develop anemia
and bone loss. These gender-based differences may be due to interactions
between the drugs and female hormones. Or, they may be because most drug
dosing is standardized, based on research done predominantly in men. Women,
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WOMEN AND HIV
who in general weigh less than men, may receive unnecessarily high amounts
of the drugs.
Treatment advocates continue to demand greater inclusion of women with
HIV in clinical trials for anti-HIV drugs, as well as for clinical trials that are specifically designed to answer questions about treatment for women with HIV.
Psychosocial issues
for women living with HIV
Each woman experiences HIV differently. However, there are some important
generalizations that can be made about women’s experience of HIV as a group.
Many women are diagnosed with HIV late in the course of their disease. This
Women with HIV are
more likely than men to
experience drug side
effects such as rash and
may be because they and their doctors do not perceive women to be at risk
severe allergic reactions.
for HIV infection. In addition, women can be adversely affected by the social
Women are most likely
environment they live in; they may lack stable housing, educational and employment opportunities and steady income. Factors such as these can greatly affect
a woman’s ability to make use of HIV testing and other medical services.
Once a woman knows her HIV status, research has shown that she may
postpone seeking medical care. The reasons for this include:
• limited access to health care;
to see the fat gain
associated with
lipodystrophy in their
breasts and stomach.
• geographic location;
Women with HIV are
• immigration status;
also more likely to develop
• lack of power to determine her own health needs;
• other household responsibilities, such as childcare or looking after
anemia and bone loss.
a sick partner;
• the stigma associated with HIV;
• unstable housing;
• lack of income;
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WOMEN AND HIV
• partner violence;
• substance use;
• depression and other mental health issues.
These factors can affect women’s health and suport services are important to
address them. AIDS service organizations can provide services for women with
HIV, and in some cities there are organizations specifically for women with HIV.
It is preferable if
your doctors have
experience with HIV.
Your healthcare team
Women and men should receive the same quality and level of medical care.
When women with HIV receive appropriate care and treatment for this disease,
they experience similar benefits to those experienced by men.
Many women with HIV see different doctors for different needs. They may
see an HIV specialist for HIV-related conditions and a family doctor for health
matters unrelated to HIV. Women with HIV may also see a gynecologist (a doctor specializing in women’s reproductive health), and an obstetrician or fertility
specialist for issues related to pregnancy. While not always possible, it is preferable if these doctors have experience with HIV. Your family doctor or infectious
disease specialist should be able to make referrals to knowledgeable medical
specialists (see Chapter 3, Your healthcare team).
Having HIV can make
certain gynecological
conditions more common,
more serious and more
difficult to treat.
Gynecological care
of women with HIV
As a woman living with HIV, it is especially important to take care of your gynecological health. Having HIV can make certain gynecological conditions more
common, more serious and more difficult to treat. These conditions include:
• some vaginal infections, including yeast infections and bacterial vaginosis
(an infection that changes the normal balance of bacteria in the vagina);
• sexually transmitted infections such as gonorrhea, chlamydia, herpes
and syphilis;
• pelvic inflammatory disease (a potentially serious bacterial infection of the
reproductive system).
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It is very important for women with HIV to schedule annual Pap tests with their
doctor. A Pap test checks for changes in the cervix. An abnormal Pap test can
indicate problems requiring closer observation or immediate treatment. Women
with HIV are more likely than HIV-negative women to have abnormal Pap test
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WOMEN AND HIV
results, especially if they have a lower CD4+ cell count.
During a Pap test your doctor will do an internal examination of the vagina
and take a small sample of cells from your cervix. You may feel some discomfort. While doing the Pap test, the doctor should also perform an external
examination of the vulva to check for such conditions as herpes and genital
Women with HIV should
schedule annual Pap
warts (see Chapter 7, Your sexual health, and Chapter 9, Monitoring your health).
tests with their doctor.
Cervical dysplasia, an abnormal growth of cells of the cervix that can be
Cervical dysplasia, an
detected by a Pap test, is more common in women with HIV, especially in
women with advanced HIV disease. It is often more severe and difficult to treat
abnormal growth of cells
than in HIV-negative women. Early detection and treatment can prevent the
in the cervix that may
progression of dysplasia to cervical cancer, a life-threatening illness. Cervical
lead to cancer, can be
dysplasia is caused by an infection with a virus called human papillomavirus
(HPV). HPV is a sexually transmitted virus that can also cause genital warts
(see Chapter 7, Your sexual health).
detected by a Pap test.
Cervical dysplasia is
more common in women
Pregnancy and HIV
with HIV, especially
those with advanced
Advances in HIV treatment and prenatal care for women with HIV have improved
their health and greatly reduced the risk of transmitting HIV to their babies
HIV disease.
(see below). Now, many women are considering pregnancy and having healthy,
HIV-negative children.
In spite of the fact that women with HIV can have healthy children, women
who have told others about (disclosed) their positive HIV status may face stigma
and discrimination if they choose to have a child. This is often because other
people do not know the medical facts about HIV and pregnancy. On the other
Many women are
hand, among women who have not disclosed their HIV status to others, there
considering pregnancy
may be family or cultural pressures to have children. These women may face
and having healthy,
stigma if they choose not to have children.
MANAGING YOUR HEALTH
HIV-negative children.
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Some women with HIV become pregnant without planning it. Or, some
women may find out they have HIV at the same time they find out they are
pregnant. This can be a lot of news to deal with at once. You will face questions
about how to proceed with your pregnancy. You may decide to keep your
baby, you may consider having an abortion or you might think about putting
your baby up for adoption. Talk with your doctor, a counsellor at your local
AIDS service organization or someone you trust about how to get more information and support so that you can make the decision that is right for you.
Stopping vertical transmission of HIV
There are many names for how HIV is transmitted. When HIV passes to a fetus
or baby from an HIV-positive mother, it is called vertical transmission. It is also
sometimes called mother-to-child transmission or perinatal transmission. When
HIV passes between sexual partners or people who share needles, this is
called horizontal transmission.
In the absence of quality prenatal care that includes anti-HIV treatment, HIV
may be transmitted from a woman to her child in the womb, during labour and
Effective HIV treatment
delivery or through breastfeeding. Without proper treatment and care, the risk
strategies can reduce the
of mother-to-child transmission is approximately 25 to 30 per cent.
risk of mother to child
transmission to less
than 2 per cent.
However, doctors now know that following certain treatment strategies can
reduce the risk of vertical transmission to less than two per cent (two chances
in one hundred). These strategies involve:
• diagnosing HIV in the mother through prenatal screening;
• providing good medical care for pregnant women with HIV;
• giving anti-HIV treatment to the woman during pregnancy, labour
and delivery;
• considering delivery by Caesarean section;
• giving anti-HIV treatment to the newborn for a brief period after birth;
• not breastfeeding.
For more information about the details of these strategies, talk with your doctor.
Having a healthy pregnancy
Good health is very important while you are pregnant, and there are many
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things you can do to help yourself have a healthy pregnancy. First, it is important
that you get good medical care. Try to find an obstetrician (a doctor who specializes in pregnancy and childbirth) who is familiar with HIV care. It is best to
do this before you get pregnant, or soon after. Your HIV doctor can help you.
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WOMEN AND HIV
You should receive the same level of care that is available to any woman who
is pregnant.
Research shows that pregnancy itself does not make your HIV disease
worse and HIV does not change how your pregnancy proceeds. Still, doctors
say a pregnancy is high risk if there is any illness or infection, including HIV.
This means that you may have more frequent visits to the doctor to monitor
your health and the health of your fetus.
Treating your HIV infection and reducing the amount of virus in your blood
(your viral load) during pregnancy is one of the most important ways to reduce
Pregnancy itself does not
make your HIV disease
worse and HIV does
vertical transmission. Your doctor will talk with you about taking anti-HIV
not change how your
treatment. When choosing your drugs, you should consider a combination
pregnancy proceeds.
that is tailored to your health and needs and that will reduce the risk of
vertical transmission.
In addition to anti-HIV drugs, there are many things you can do to help
have a healthy pregnancy. These include:
• make sure that your doctor tests and treats you for sexually transmitted
infections (see Chapter 7, Your sexual health);
• make sure that your doctor tests you for hepatitis B, group B
streptococcus status and rubella immunity;
• eat a healthy diet;
• find healthy ways to deal with stress;
• take a daily prenatal multivitamin (prenatal vitamins are different from
regular multivitamins—make sure you get the right one);
• stop or reduce smoking, drinking alcohol and using recreational and
street drugs;
• put together a support network, including family members, friends and
supportive staff at your local AIDS service organization or HIV clinic.
If you are pregnant and drinking alcohol or using drugs, cutting down or stopping will increase your chances of a healthy pregnancy. Some women may not
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be able to stop completely or stop without help. Speak to your doctor or
someone you trust to help you find the resources you need to keep you and
your baby as healthy as possible.
WOMEN AND HIV
How will I know if my baby is HIV-positive?
If you receive good care during your pregnancy and delivery, chances are minimal
that your child will be HIV-positive. Even so, your healthcare team will monitor
your baby for the first few months after birth. Your baby may receive three or
four HIV tests before getting a definitive result as to his or her HIV status.
Babies are tested for the presence of HIV with a test called a PCR test,
which looks for the virus itself. Tests for adults usually look for the HIV antibodies,
the body’s response to HIV. Adult tests do not work in babies because all
babies born to women with HIV carry their mother’s antibodies for up to 18
months after birth. These antibodies disappear with time. Just having their
mother's antibodies in their blood, does not mean that a baby has HIV infection.
The PCR test is the only way to see if the baby is infected or not.
HIV-positive babies are diagnosed between six weeks and four months
There are many ways
after birth using PCR testing. However, with anti-HIV treatment, the chance that
your baby will be HIV-positive is less than two per cent. Even if your baby is
that a woman living
HIV-positive, it is possible for him or her to live a long and healthy life with HIV.
with HIV can attempt
Many children with HIV are now active teenagers and young adults. Some are
to conceive while not
even planning families of their own!
transmitting HIV to her
partner or her baby.
Becoming pregnant
For women with HIV, pregnancy raises particular issues. First, women are worried about transmission of HIV between partners while trying to conceive. As
well, women with HIV may find it more difficult to conceive than HIV-negative
women. It is not clear if it is HIV, its treatment or possibly co-infection with other
sexually transmitted infections that contribute to infertility in women with HIV.
Fortunately, there are many ways that a woman living with HIV can attempt
to conceive while not transmitting HIV to her partner or her baby. Many women
with HIV who have HIV-negative or same-sex partners try alternative insemination.
This is the process of collecting the sperm from their partner or sperm donor in
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a condom or cup and inserting the sperm into the woman’s vagina using a
syringe. This process is often done at home. If a woman is not able to conceive
using this method, she may require intrauterine insemination with medical
assistance. During intrauterine insemination, a small tube is inserted into the
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WOMEN AND HIV
woman’s cervix and the sperm is injected with a syringe. There is no unprotected
contact between partners, so there is no risk of HIV transmission.
When an HIV-positive woman’s male partner is also HIV-positive, his sperm
can be chemically “washed” to remove the HIV. This sperm washing technique
greatly reduces the risk of transmitting virus between HIV-positive partners,
thereby avoiding re-infection with a different strain of HIV or with other infections.
This technique can be used when a man with HIV wants to father a child with
an HIV-negative woman.
Access to assisted reproduction techniques like these is very limited overall,
and you may need to travel to another province in order to get the services
you need. You can contact CATIE for more information about fertility clinics in
your region.
Some partners decide to conceive using natural methods. That is, they
have unprotected sex. This method can have a high risk of transmitting HIV
between partners, especially if it is the male partner who is HIV-positive, and
so doctors do not recommend this method to conceive.
People who do not use condoms often take other precautions to minimize
the risk of passing HIV. Research has revealed that one of the most important
precautions is reducing the viral load of the positive partner to undetectable
levels. Sustained suppression of the virus in the blood generally (but not always)
means a lower level of virus in the semen or vaginal fluids. Another precaution
is to ensure that neither partner has a sexually transmitted infection, lesions and
abrasions or a condition that causes inflammation of the reproductive organs,
such as bacterial vaginosis. Lesions, abrasions and inflammation increase the
chance of transmitting HIV.
As well, couples choosing to have unprotected sex to conceive often limit
exposure to the few days around ovulation when the woman is most likely to
become pregnant. Your healthcare provider can teach you how to recognize
signs of ovulation so that you have the best chance of becoming pregnant.
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Birth control
Many women with HIV choose to use birth control. Having HIV can make
choosing a birth control method more complicated because women with
HIV must consider other factors such as the need to stop HIV transmission
and the potential for interactions between anti-HIV drugs and some hormonal
contraceptives.
Male and female condoms are often used as birth control by women
and men with HIV because they are the only birth control method that also
Having HIV can make
effectively reduces HIV transmission. There are numerous benefits to using
condoms:
choosing a birth control
• female and male condoms are the most effective ways to prevent the
method more complicated
transmission of HIV and many other sexually transmitted infections;
because women with
HIV must consider other
factors such as the need
to stop HIV transmission
and the potential for
interactions between
• condoms are up to 98 per cent effective at preventing pregnancy if
used correctly;
• the female condom is the only female-controlled method of birth control
that also provides protection from HIV and sexually transmitted infections.
• the female condom can be inserted prior to a sexual encounter;
• you don’t need a prescription to buy condoms.
There are drawbacks to using condoms:
• condoms can break if not put on correctly;
• using a male condom requires full co-operation from your male partner;
anti-HIV drugs and some
• condoms are perceived by some to decrease sexual pleasure;
hormonal contraceptives.
• female condoms are expensive and not available everywhere in Canada.
For more information about condoms, see Chapter 7, Your sexual health.
Additional birth control methods can also be used to further reduce the risk
of becoming pregnant, although they have no effect on HIV transmission risk.
Before deciding on a birth control method to use with condoms, an HIV-positive
woman should consider some important questions.
• Will this birth control method interact with my anti-HIV drugs or other
drugs I am taking?
• Will it increase the chance of transmitting HIV to my partner?
• How well can I incorporate it into my lifestyle?
• How effective is it at preventing pregnancy?
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• How safe is it?
• How affordable is it?
• How will it impact my chances of getting pregnant in the future if
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WOMEN AND HIV
I choose to?
Currently available contraceptive methods include:
• hormonal contraceptives;
• diaphragms and cervical caps;
• spermicides;
• permanent birth control;
• natural birth control, such as the rhythm method;
• emergency contraception or the “morning after” pill.
Hormonal contraceptives are available in many forms. Some (such as the birth
control pill) are taken orally. Some are injected and others are inserted into the
vagina (either at home, such as vaginal rings or sponges, or by a doctor in the
case of an intrauterine device). There is also a patch available that provides
birth control medication through the skin. Depending on which method you
Many hormone-based
choose, you will need to use hormone methods daily, weekly, monthly or yearly.
birth control methods
Benefits of hormone-based birth control:
• they are very effective (97 to 99 per cent) in preventing pregnancy;
• they may reduce the risk of several medical conditions, including certain
can interact with
anti-HIV drugs.
cancers of the reproductive organs, pelvic inflammatory disease, noncancerous growths of the breasts and ovaries, and thinning of the bones
(osteoporosis).
Drawbacks of hormone-based birth control:
• they are not effective against HIV and other sexually
transmitted infections;
• they can have many possible side effects, including an increased risk of
blood clots, heart attack and stroke, especially if you smoke.
Many hormone-based birth control methods can interact with anti-HIV drugs.
These interactions can decrease the effectiveness of the hormones in preventing
pregnancy. These interactions may also decrease the effectiveness of the antiHIV drugs. If this happens, HIV may develop resistance and future treatment
options may be reduced. In all cases, it is important to discuss drug interac-
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tions with your doctor before choosing a hormone method. For more information about drug resistance and how it can develop see Chapter 10, Treatments.
Diaphragms and cervical caps are small devices that fit over the cervix at
the end of the vagina. Both need to be fitted by a doctor and used with a
spermicide cream or jelly. They are less effective than condoms at preventing
pregnancy because they do not prevent the sperm from entering the vagina.
Benefits to using diaphragms and cervical caps:
• they are very effective in preventing pregnancy if used correctly;
• there are usually few to no side effects;
• they cannot usually be felt by either partner.
Drawbacks to using diaphragms and cervical caps:
• they do not offer protection against HIV and other sexually
transmitted infections;
• they may be difficult to insert.
Spermicides are available in foams, jellies, creams and suppositories (small
capsules of medicine that are inserted into the vagina). They work by killing
sperm before it has a chance to reach the cervix. Spermicides are only about
70 per cent effective in preventing pregnancy and offer no protection against
HIV and other sexually transmitted infections.
Spermicides do not kill HIV and, in fact, may increase the risk of HIV transmission by irritating the skin in the vagina and rectum. They should not be used
as a means of preventing HIV transmission.
Permanent birth control (sterilization) involves a surgical procedure that can
be performed on a woman (tubal ligation) or a man (vasectomy). During a tubal
ligation procedure, a doctor closes or blocks a woman’s fallopian tubes so that
the egg cannot travel to the uterus and be fertilized. During a vasectomy, a
doctor closes or blocks the tubes that carry sperm so that it cannot leave the
body. These procedures are almost 100 per cent effective against pregnancy;
however, they are not effective against HIV and other sexually transmitted
infections, and condoms must still be used to prevent transmission.
Natural birth control methods include abstinence, sex without intercourse,
withdrawal of the penis from the vagina before ejaculation, and fertility awareness-based methods, such as the rhythm method, that rely on closely monitor-
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ing the woman’s ovulation cycle and restricting intercourse to when she is least
likely to become pregnant. Abstinence—not having intercourse at all—is 100
per cent effective. Other natural birth control methods are only partially effective
in preventing pregnancy but offer no protection from HIV and other sexually
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WOMEN AND HIV
transmitted infections. Withdrawing the penis before ejaculation does not
decrease the risk of transmitting HIV because the virus is present in the pre-cum
that leaks out prior to ejaculation.
Emergency contraception can be used to help prevent pregnancy after
unprotected sex. The “morning-after” pill is sold over the counter from your
pharmacist and is known as “Plan B.” It can be effective in reducing the risk of
pregnancy if started within three days after unprotected sex. It offers no protection against HIV and other sexually transmitted infections.
You may be thinking about ending your pregnancy by having an abortion.
You may feel you cannot care for a child at this time, or you may have other
reasons. Having an abortion is a very personal choice, and only you can decide
whether or not to continue your pregnancy. No one can force you to have a
baby or force you to end your pregnancy. You may want to know more about
abortion. You can discuss your options with your doctor or nurse. Some
women worry that having an abortion will make it harder to get pregnant again.
Most women go on to have normal healthy pregnancies after an abortion.
Menstruation and menopause
Throughout their reproductive lives, many women with HIV experience irregularities in their menstrual cycle such as spotting between periods, heavy bleeding
or no bleeding at all. Studies have found that menstrual irregularities are more
common in women who have low CD4+ cell counts, high viral loads, who are
significantly below their ideal body weight or use intravenous drugs, such as
heroin or methadone.
Menopause is the point in a woman’s life when her menstrual periods have
completely stopped. This usually happens roughly around the age of 50 in HIVnegative women. In women with HIV, it may occur earlier.
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A woman can usually tell she is approaching menopause because her
periods start changing—they may lengthen, shorten or grow irregular. This time
is called perimenopause. During perimenopause and menopause—a period
which can last several years—hormone levels fluctuate and you can expect to
experience symptoms such as:
• increasingly irregular menstrual periods;
• hot flashes;
• night sweats;
• vaginal dryness;
• frequent urination;
• skin changes, including thinner skin, wrinkling and acne;
• trouble sleeping;
• fatigue;
• lack of sexual desire;
• forgetfulness;
Symptoms of menopause
may be difficult to
distinguish from
symptoms of HIV.
• emotional changes;
• depression.
In addition, some women with HIV have lower CD4+ counts after menopause.
Symptoms of menopause may be difficult to distinguish from symptoms of
HIV. For example, women with HIV may experience irregularities in their menstrual
cycles even if they’re not going through menopause. Similarly, women with HIV
who experience hot flashes at night may be misdiagnosed as having night
sweats that are common with untreated HIV. Vaginal dryness can be mistaken
for a yeast infection. It is important to keep track of your menstrual cycles and
discuss menopause with your doctor to avoid a misdiagnosis or unnecessary
hormonal treatments. Whatever stage of your life, it can be helpful to have your
hormone levels checked.
After menopause, all women are at increased risk of thinning bones and
fractures, heart disease and other conditions related to aging. Women with HIV
may face an even greater risk of these if they are taking anti-HIV drugs. See
Chapter 11, Side effects and symptoms, and Chapter 18, HIV and aging, for
more information on these issues.
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Tips to help stay healthy after menopause.
• Eat a healthy diet (see Chapter 4, Healthy living).
• Supplement your diet with calcium and vitamin D3 daily to help
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WOMEN AND HIV
prevent bone loss.
• Quit or cut down on smoking.
• Drink alcohol moderately.
• Perform exercise such as aerobics, swimming, running or brisk walking
for 30 minutes three times a week and include weight-bearing exercises
in your program.
• Talk to your healthcare provider about the following tests and exams:
• mammogram;
• gynecological exam and Pap test;
• bone density scan;
• blood tests for lipid levels;
• colonoscopy. (See Chapter 9, Monitoring your health, for more
information on tests.)
Women with HIV
Dating, sex and relationships
Women with HIV can date, have active sex lives and build healthy relationships.
At the beginning of any relationship, getting to know someone new can be
complicated. Adding HIV to the mix makes things even more so. If you are
can date, have active
sex lives and build
healthy relationships.
dating someone new, in a relationship or considering one, questions about
safer sex and when to disclose your status may be on your mind.
Just as each HIV-positive woman is unique, so is her approach toward
whom she tells about her HIV-positive status. Disclosure is often based on a
woman’s own experience in relationships. Some women choose to disclose
their status before the first date. The benefits to this approach include reducing
the stress of keeping a secret. Alternatively, some women prefer to wait until
they get to know the person better.
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WOMEN AND HIV
People with HIV do have a legal obligation to disclose their HIV status
before they put another person at “significant risk” of exposure to HIV. The legal
definition of significant risk is evolving, but definitely includes vaginal or anal sex
without a condom. Women who share drug injection equipment with their
partners are also obliged to disclose their HIV status before shooting. See
Chapter 21, Legal issues for more details about the legal obligation to disclose
your status.
It is best that you talk with any potential sexual partner about your HIV
status before the relationship becomes sexual. A small number of women have
been charged for transmitting or exposing a sexual partner to HIV when they
had not disclosed their HIV status to them.
To protect yourself against people who might claim you never disclosed
your status, it is a good idea to document your disclosure. You might consider
making an appointment for your partner to visit your HIV doctor. Your doctor
can then make sure that your partner understands the risks of infection, and
can also record the discussion to confirm that disclosure took place.
If you are diagnosed with HIV while in a relationship, it is important that you
tell your current partner about your status as soon as possible. This can be an
especially difficult task if you rely on your partner for food, shelter, protection or
drugs. You may fear losing the relationship and the benefits it provides when
you disclose. While this can happen, your partner may also be very supportive.
For assistance with the difficult task of telling your partner, a counsellor at your
local HIV clinic or AIDS service organization or a public health nurse can help.
Some women are in abusive relationships and fear violence if they tell their
partner that they are HIV-positive. If you are in this situation, it is important that
the disclosure takes place in a safe environment and you have a plan in place
for your safety. Again, a doctor, friend, counsellor or public health nurse may be
able to help.
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Resources
Websites for women living with HIV
• Voices of Positive Women (www.vopw.org)
• Positive Women’s Network (www.pwn.bc.ca)
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WOMEN AND HIV
• The Centre for AIDS Services of Montreal (www.netrover.com/~casm/)
• The Well Project (www.thewellproject.org)
Sisters are Doing it for Themselves
Special issue of the Positive Side magazine for women living with HIV
You can have a health pregnancy if you are HIV positive
Comprehensive information for women living with HIV who are pregnant or
planning for pregnancy
The Positive Side
Health and wellness magazine contains articles about women and HIV,
such as:
• 10 things you don’t know about HIV+ women
• The goddess flesh club
• From diapers to disclosure
Look in the e-zine index (www.positiveside.ca)
Plain and Simple Factsheets on health issues for women living with HIV
Available in multiple languages
In-Depth Factsheets on health issues for women with HIV
Comprehensive information for people living with HIV and their
care providers
Pocket guide for women living with HIV
Booklet from the Positive Women’s Network in British Columbia
(www.pwn.bc.ca)
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
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Children
and HIV
16
Many people living with HIV have children in their lives. Some of
us may have our own children, while others may have special
CONTENTS
relationships with nieces, nephews, grandchildren or children of
our friends and partners. Whether they are living with HIV themselves or affected by your HIV status, the tips in this chapter will
help you to provide care and support to your children.
Sections of this chapter were adapted by Shari Margolese
from Amy Buch, Talking with Your Children About your HIV Status
• What if my child is
HIV-positive?
• HIV in children
• HIV treatment for children
or Your Children’s Status (www.thewellproject.com), July 2005
and from Shari Margolese, Talking with Your Children about HIV:
HIV Awareness for Children (www.thewellproject.com), July 2005.
• Talking to children
about HIV
About the author
Shari Margolese has been involved as an active volunteer in the AIDS community since shortly after her own
HIV diagnosis in 1993. As a mother of an HIV-positive
child, her advocacy efforts have often focused on the
needs of the HIV-positive family and the rights of women living with HIV to
have children. Shari is currently co-principal investigator on several community-based research projects, including the development of a protocol
for fertility and pregnancy care for people living with HIV in Ontario.
Currently, Shari’s volunteer commitments include working with Voices
of Positive Women in Toronto, Blueprint for action on women & girls and
HIV in Canada, and ATHENA.
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CHILDREN AND HIV
What if my child is HIV-positive?
In recent years, very few children in Canada have been born HIV-positive. In
fact, with effective anti-HIV treatment for both mother and infant, along with
adequate prenatal care and no breastfeeding, less than two per cent of babies
born to women with HIV are actually infected with HIV. But, for the small number
With effective anti-HIV
treatment for both
of parents who are faced with the positive diagnosis of their child, these statistics
are of little comfort.
The first thing to remember is that it is not your fault! No parents want their
mother and infant,
children to have HIV. What is comforting, however, is the knowledge that most
along with adequate
children born with HIV in Canada live long, productive and healthy lives. Many
prenatal care and no
of these children are now young adults planning for their futures, attending
breastfeeding, less than
2 per cent of babies born
to women with HIV
school, playing sports, dating and planning families of their own.
Raising an HIV-positive child is not without challenges. Not only do you
need to learn about how to manage your health, but also the health of your
child. Having knowledge of how HIV affects children differently is helpful in
making informed decisions about your child’s health.
are actually infected
with HIV.
HIV in children
You may wonder, is HIV different in children? For the most part, HIV acts the
Most children born
same way in children as it does in adults. However, there are some differences.
with HIV in Canada live
You may go to the doctor with your child and find that his or her CD4+ cell
long, productive and
counts are much higher than yours. This is because children normally have
healthy lives.
much higher CD4+ cell counts to begin with. This is also true of viral load (the
amount of HIV in the blood). Children’s CD4+ cell counts and viral load levels
usually reach adult levels when they reach puberty.
Another difference between children and adults is that children’s immune
For the most part,
systems are still developing. There is not much research available to know
HIV acts the same way
exactly what effect HIV has on the developing immune system, but we do
in children as it does
in adults.
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know a few things. For example, HIV-positive children tend to get more
bacterial infections, like pneumonia or sinusitis. They may also tend to have
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Some HIV-positive children also get warts and molluscum contagiosum
(a bumpy skin rash). Adults can get these, too, but they can be harder to treat
in children.
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CHILDREN AND HIV
Preventing illnesses
It can be scary when HIV-positive children get sick, especially when they are
very young. With every sniffle you may feel that your child has a serious illness.
Rest assured, while some children do get seriously ill, most HIV-positive children
who have access to regular health care, drugs and good nutrition generally
enjoy good health. Preventing illness is not always possible, but there are some
Just as it is important
things you can do to help your child stay healthy.
to find an experienced
Many of the things you can do to help keep your child healthy are similar to
keeping yourself healthy, but there are some exceptions. For example, just as it
doctor to manage your
is important to find an experienced doctor to manage your HIV care, you also
HIV care, you also
need to find a doctor for your child. Usually, your obstetrician, family doctor or
need to find a doctor
infectious disease specialist can refer you to a pediatric infectious disease
specialist (children’s HIV doctor) to care for your child. If there are no specialists
for your child.
where you live, you may have to travel for appointments or work with another
infectious disease specialist and general pediatrician near your home. You can
find out more about the healthcare team in Chapter 3, Your healthcare team.
One of the most important things you can do is to make sure your child is
vaccinated and that vaccinations are kept up to date. Most HIV-positive children
One of the most
can receive the same vaccines that other children receive. These include:
important things you can
diphtheria, tetanus, pertussis (DTaP) vaccine; polio (IPV) vaccine; H. flu type B
do is to make sure your
(HiB) vaccine for meningitis; pneumococcal vaccine; and hepatitis A and B
vaccines. Other vaccines depend on your child’s CD4+ cell count. If the CD4+
cell count is high enough, your child can receive chicken pox and mumps,
measles and rubella vaccines. For children who have seriously weakened immune
child is vaccinated and
that vaccinations are
kept up to date.
systems, these vaccines can cause illness and should only be used in consultation
with your child’s HIV doctor.
Good hygiene, including hand washing, along with a healthy diet can also
go a long way to reducing your child’s chance of becoming ill.
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HIV treatment for children
Making treatment decisions for our HIV-positive children can be very stressful.
Adults usually ask themselves and their doctors, “am I ready to start treatment,”
“what treatment should I take,” “how often do I have to take it” and “how will it
affect me?” The same questions can be asked when deciding on treatment for
our children. Finding a knowledgeable care provider and becoming familiar with
Recent research has
shown that it may be
treatments for children can help in your decision making.
Is your child ready to start treatment? Usually, when adults ask this question
they factor in viral load, CD4+ cell counts and their financial and emotional
beneficial for children to
readiness to start. When it comes to making this decision for our kids, there
start drugs as early as
are a few extra considerations. In the past, anti-HIV drugs were started if children
three months of age.
Starting early may
reduce the chance that
your child will become
sick in the future. You
should make this decision
together with your
child’s doctor.
had a high viral load or failed to thrive. (This means not reaching normal milestones of growth and development.) Recent research has shown that it may
be beneficial for children to start drugs as early as three months of age, whether
or not they reach these important milestones. Starting early may reduce the
chance that your child will become sick in the future. You should make this
decision together with your child's doctor.
What treatment should your child take? There is not as much information
available about the use of anti-HIV drugs in children as there is for adults. Many,
but not all, of the treatments available for adults are also available for children.
Young children usually receive doses of drugs based on their weight. Once
children reach adult proportions, adult doses are given. See Chapter 10,
Treatments, for more information on anti-HIV drugs.
How often does my child need anti-HIV drugs?
Just like adults, children need to take their anti-HIV drugs consistently. Dosing
schedules will depend on which drugs your child is taking. Whatever drug
Getting children to
take medicine can be a
real challenge.
treatment your child is on, he or she should take the drugs at the same times
each day. Some anti-HIV drugs need to be taken with food while some do not.
When talking with your child’s doctor about which anti-HIV drugs your child will
take, think about your day and your child’s schedule. Think about how you will
fit work, school and childcare into your child’s drug dosing schedule.
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Getting children to take medicine can be a real challenge. Children might
not like how the drugs taste or might have trouble swallowing pills. Older children,
especially teenagers, may hide pills or pretend to take them. Try to involve your
child in filling dosettes, preparing liquid formulations and other medicine-related
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CHILDREN AND HIV
tasks. Remember that you are training your child for a lifetime of taking medicine
on his or her own. You may want to reward your child after he or she takes the
medicine by offering a small food treat or sweet drink, such as chocolate milk
or a favourite juice, to wash it down. Many parents feel tremendous guilt when
giving their children drugs. Remember, by giving your child anti-HIV drugs regularly you are helping to keep him or her healthy and doing what is best for your
child. (Even if it doesn’t feel that way sometimes!)
How will anti-HIV drugs affect my child?
Generally, anti-HIV drugs should make your child feel better, have fewer infections
and grow at a normal rate. However children, like adults, can also experience
side effects from anti-HIV drugs. Some children are too young to tell you just
Anti-HIV drugs should
make your child feel
better, have fewer
infections and grow at
a normal rate. However
how they feel so it is important that you keep track of changes in eating habits,
children, like adults,
body functions, skin changes (such as rash), sleeping patterns and other func-
can also experience
tions and habits. These can give you a hint that your child may not be tolerating
his or her drugs. Older children should be instructed to tell you if they are not
feeling well or if their bowel movements change. Be sure to discuss any changes
side effects from
anti-HIV drugs.
with your child’s doctor. Just like adults, how children experience side effects is
very individual and will also depend on which drugs he or she is taking. Your
child’s doctor can tell you what side effects your child may experience. If your
child is not tolerating the anti-HIV drugs well, you can also talk to your doctor
about the possibility of switching to a different drug combination (see Chapter
11, Side effects and symptoms).
Talking to children about HIV
Talking to children about HIV is a scary idea for most adults, especially when
there is HIV in the family. The thought of disclosing either your HIV status or
your child’s can be overwhelming and full of emotions. Rest assured that what
you are feeling is normal and that most parents feel frightened, anxious or guilty.
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CHILDREN AND HIV
Just like telling another adult that you are HIV-positive, talking to your kids
about HIV takes thought, timing and planning. You may want to enlist the help
of a friend, family member or healthcare provider, such as a doctor or counsellor
who knows you and your child. Here are some other helpful tips to consider
before you disclose:
• share your disclosure plan with people who already know. They can
support you and your child;
• know the facts about HIV, including basic information such as how HIV
is transmitted (and how it is not);
Talking to your kids
about HIV takes thought,
timing and planning.
• consider timing: are you ready to tell, and is your child ready for
this information?
Every parent has his or her own style when talking about important subjects.
Some parents choose to have a specific time when the family will sit down and
formally discuss HIV. They may present pamphlets or other resources to help
children understand the facts.
Other parents take cues from their children and the environment to introduce
the subject of HIV. For example, they may try to bring up the discussion when
their children see or hear something about HIV on TV. Ask what the children
have heard and what they know about HIV. This will help you figure out what
they already know and what is left for you to explain.
Take some comfort in what you know: how your children learn new information, what your children may already know about HIV and what feels most
supportive to your family. Use this knowledge to decide how to disclose about
HIV to your family. While there may not be an exact best way to disclose, there
are some steps you can take to prepare. For more information on disclosure,
It’s never too early to
talk to your children
about HIV.
see Chapter 6,Your emotional health, and Chapter 21, Legal issues.
Talking to children of different ages
It’s never too early to talk to your children about HIV. In fact, by the third grade,
most children have already heard about it. Talking to children about HIV is not a
one-time-only conversation. Children will be ready to accept different levels of
information at different ages. Talk early and talk often to ensure your children
have age-appropriate information throughout their childhood.
Toddlers/preschoolers Very young children are unable to fully understand
things such as disease, death or sex. They are, however, able to learn basic
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infection control information such as washing their hands and using a tissue.
They can learn in the simplest of terms to keep their germs to themselves. This
is also a good age to teach children the correct names for their body parts and
lay the ground for a supportive and open relationship with them.
School-age children Children 5 to 8 years old are just learning about health,
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CHILDREN AND HIV
sickness, death and sex. They can understand that HIV is a serious health
problem that is caused by a virus, and that their chances of getting HIV are
very small. In fact, by the third grade, most children have already heard about
HIV. You don’t have to discuss sex at this age. However, you can continue to
reinforce to children that some body fluids carry infection and should not be
exchanged. Use opportunities such as scrapes and cuts to teach about how
HIV can be transmitted. Children with HIV may begin to ask questions such as
“why do I have to go to the hospital and my cousin/sister/friend doesn’t?” and
“why do I have to take medicine?” Be prepared to answer these questions with
full or partial information. Answers such as, “because you have a virus in your
blood or because you need medicine to stay healthy” often will satisfy the
curiosity of school-age children.
Disclosing your child’s HIV status to others
Many parents of children with HIV feel that the most difficult decisions
that they face are related to the disclosure of their child’s HIV status to
others. Disclosure to day care, schools and similar settings is of particular concern. The laws which protect the rights and confidentiality of all
people with HIV mean that you do not have to tell anyone that your
child has HIV.
However, many families feel that the best situation for their child
in these settings is one where they can disclose fully or partially in an
atmosphere of trust. Families who have successfully disclosed their
child’s HIV status in schools and day care settings have often been supported by the child’s healthcare providers, who can provide any information that is required. Free from fear of discrimination, the benefits of
disclosure include increased confidence and reduced fear for the child;
reduced isolation and anxiety; increased support for the family; and
increased HIV/AIDS awareness and sense of community for the school.
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Preteens Children 9 to 12 years old think a lot about their bodies. This is the
time to tell them exactly how HIV is spread. Since HIV is commonly spread by
sexual contact, now is the time to give your children correct information about
sex. Warn them of the dangers of casual and unsafe sex. Let them know that
needle or syringe sharing for intravenous drug use, steroid injection, tattooing
or body piercing can put them at risk for getting HIV. Teach pre-teens that they
have choices in life and that decisions they make today could have an effect on
the rest of their lives. HIV-positive pre-teens often know their own status by this
age. Help them devise coping techniques if HIV is a secret outside of your
Teach pre-teens that
home. Telling a child that he or she may face stigma due to his or her HIV
they have choices in life
infection is often more difficult for parents than telling the child he or she has
and that decisions they
HIV. Children at this age may become angry if they are being told they are HIV-
make today could have
positive. HIV-positive parents can expect challenging questions such as “if I got
it from you, then how did you get it?” For some parents, disclosing how they
an effect on the rest
were infected is more difficult than telling their children they are HIV-positive. It is
of their lives.
helpful to have support from your own counsellor to work through any disclosure
fears you may have.
Teens Children aged 13 to 19 are more concerned with their self-image and
friendships than what their parents have to say. Many teenagers take risks and
feel that “it won’t happen to me.” This could mean many things, including not
practising safer sex and becoming infected with HIV for HIV-negative kids, or
for HIV-positive kids, not taking anti-HIV drugs regularly and getting sick. During
Help your teen
connect with other
HIV-positive children his
or her own age.
this crucial time, it is important to continue to provide your teen with accurate
information about HIV and safer sex. HIV-positive teens must also be told
about the legal implications of non-disclosure. They will also begin to make
decisions about disclosing to friends. Try to give them helpful tips on whom to
tell and when. If possible, help your teen connect with other HIV-positive children
his or her own age. You may wish to provide resources such as books and
videos that they can view on their own. Teenagers who are just finding out that
you are HIV-positive or they are HIV-positive may feel that you didn’t trust them
enough to tell them. Try to reassure them it is not about trust, but rather not
wanting them to worry too much.
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Disclosing to children
While it can be extremely difficult to disclose HIV information to children, it is
better to tell your children as early as you can, especially once they start asking
questions. It is usually easier to tell the truth than try and cover up the diagnosis.
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CHILDREN AND HIV
Once children know, the family can start discussing things openly and dealing
with the feelings that come up. The following tips may ease disclosure for you
and your children:
• deal with your own feelings first. Gain control over your own emotions
and learn to live with the diagnosis;
• build a strong parent-child relationship;
• seek out support for yourself from friends, social workers, counsellors
and others both before and after disclosure;
• prepare by gathering HIV-related information, creating an appropriate
environment and arranging supports for your children;
While it can be extremely
difficult to disclose HIV
information to children,
it is better to tell your
• find a time to disclose that is free from interruptions and appointments;
children as early as you
• try to be as relaxed as possible before the conversation begins. Your
can, especially once they
children might notice if you are feeling anxious, sad or angry;
• disclosure is a process. Even if your children do not react the way you
start asking questions.
hoped right away, with time, support and information, they may be
more accepting;
• encourage your children to ask questions as they come up;
• give reassurance and hugs!
Resources
Websites for parents and children living with HIV
• The Well Project (www.thewellproject.com)
• The Teresa Group (www.teresagroup.ca)
• Youth HIV Site (www.livepositive.ca/english/default.asp)
Pediatric Treatment Issues
Collection of articles and resources for families and children living with HIV
(www.thebody.com/index/treat/children.html)
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CHILDREN AND HIV
Talking to kids about HIV/AIDS
Booklet from the Canadian Public Health Association
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
NOTES
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Immigrants,
refugees and
non-status
people with HIV
The Canadian immigration and refugee system can be complex,
confusing and intimidating for newcomers, especially when they
are not sure how their HIV status may affect their chances of
becoming Canadian citizens.
This chapter provides basic information about the Canadian
17
CONTENTS
• The Canadian immigration
system and HIV
• Immigrants, refugees and
non-status people
immigration and refugee system and how it affects people with
HIV from other countries. It describes mandatory HIV testing for
immigrants, services for people going through the immigration
• Immigration and
HIV testing
process, and information on how some communities have dealt
with the challenges that immigrant, refugee and non-status people
with HIV face.
• Services available to
immigrants, refugees and
non-status people with HIV
About the author
Alan Li is an HIV primary-care doctor, researcher, community
organizer and activist who has been working on issues of
anti-racism, social justice, immigrant/refugee rights, sexual
minority rights, HIV/AIDS and community capacity building
for more than 20 years. Alan is a co-founder of Asian Community AIDS
Services, the Ethno-racial Treatment Support Network and is the co-chair
of the Committee for Accessible AIDS Treatment, which is dedicated to
improving access to treatment and care for marginalized people living with
AIDS and to fostering leadership in this community of people.
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IMMIGRANTS,
The Canadian immigration system
and HIV
Immigrants and refugees represent an increasing proportion of people living
REFUGEES AND
with HIV in Canada. This points to the need for equitable services in prevention
NON-STATUS PEOPLE
education, treatment and support for immigrants and refugees who are infected
WITH HIV
and affected by HIV.
Immigrants and refugees with HIV face complex demands: the trauma
and challenges of the migration journey, the complex and confusing Canadian
immigration and refugee system, the challenges of adapting to a new culture
and lifestyle, difficulties with access to housing, and employment and stigma
and discrimination in their own ethno-racial communities and in larger society.
They also face barriers in accessing HIV-related information, treatment and
support related to language and culture, health literacy and systemic discrimination. All these demands and barriers have a significant impact on their health,
well-being and ability to participate as equal members of society.
Routes of immigration to Canada
Immigration application
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The Canadian immigration system is not only complex and confusing, it is
very intimidating for newcomers to deal with. People with HIV have tremendous
fear and concerns about possible exclusion because HIV testing is a mandatory
part of all newcomer applications.
People can become a resident of Canada through one of two major routes:
17
IMMIGRANTS,
REFUGEES AND
• by applying as an immigrant;
NON-STATUS PEOPLE
• by filing a claim as a refugee.
WITH HIV
The processes for application and the criteria for acceptance are very different
for immigrant and refugee applicants. How HIV status may affect the outcome
is also different. In addition, different categories of immigrant/refugee applicants
have different entitlement to benefits and service access.
Immigrants and refugees
Immigrants, refugees
and non-status people
Immigrants
with HIV are faced with
complex demands. These
demands and barriers
Immigrant aplications can be divided into two categories: sponsored immigrant
have a significant impact
Family Class or independent immigrant.
on these people’s health,
• Sponsored immigrant Family Class can include any family members of
someone who is already a Canadian citizen. This includes family
well-being and ability to
members by birth or adoption; however, some are given higher priority
participate as equal
than others. In general, first-degree relatives—spouse, common-law
members of society.
partner and dependent children—are given the highest priority;
• The applications for independent immigrants are evaluated by a point
system based on various criteria, such as their education, profession,
language ability and relationship to Canadians. Independent immigrants
include a whole range of applicants, including skilled workers, entrepreneurs
and investors. In addition, there are other special programs of sponsored
immigrants, such as a program for live-in caregivers.
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IMMIGRANTS,
REFUGEES AND
NON-STATUS PEOPLE
WITH HIV
Refugees
Refugees are divided into two broad groups. A refugee claimant can apply
either as a Convention refugee or as a person in need of protection.
• A Convention refugee is a person who has a well-founded fear of
persecution based on race, religion, political opinion, nationality or
membership within a particular social group. Social group can include
communities based on sexual orientation, victims of domestic violence
or transgendered people.
• A person in need of protection is a person who has a well-founded fear
of torture or unusually cruel treatment or risk to life in his or her country
of origin. These fears do not have to be related to any specific groups as
listed above. However, you cannot apply as a refugee due to “risk of life
in your country of origin” solely because your home country cannot
People with HIV have
tremendous fear and
provide adequate medical care.
Non-status people
concerns about possible
This term is often used to describe many different kinds of people who do not
exclusion because
have valid or full legal status in Canada. These are people who might otherwise
HIV testing is a
mandatory part of all
newcomer applications.
be referred to as illegal immigrants. However, the term non-status peoples is
often preferred to illegal immigrants since the term illegal adds stigma and
implies criminality, when, in fact, most of these people have actually had some
form of status in Canada at some point.
Non-status people can include:
• people who came to Canada with a legal visa that has since expired;
• people who applied for immigrant or refugee status, but were rejected
and have not left the country;
• people who came as visitors and decided to stay without extending their
visa or applying for formal status;
• people whose immigration or refugee applications are in limbo for a
variety of administrative reasons.
Whether non-status people can access any public services or assistance will
depend on the specific situation they are in.
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Immigration and HIV testing
Citizenship and Immigration Canada requires a medical exam for all immigrants
and refugees. Since January 2002, HIV testing has been a mandatory part of
the immigration examination for everyone over the age of 15. You will also be
tested for HIV if you are under 15 but have an HIV-positive parent, have
received blood or blood products or are going to be adopted in Canada.
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IMMIGRANTS,
REFUGEES AND
NON-STATUS PEOPLE
WITH HIV
On most applications for status in Canada, you will be asked if you have
any serious illnesses. If you say no, and Citizenship and Immigration Canada
later finds out that this was not true, you could be removed from Canada.
Grounds for refusal: Who will be rejected?
People who are considered inadmissible will not be allowed to come into or
stay in Canada. People will be considered inadmissible if they are a danger to
public health or safety, such as people with a criminal record or with certain
contagious diseases, such as tuberculosis.
HIV is not considered to be a danger to public health and safety. Therefore,
having HIV does not, in itself, make you inadmissible to Canada.
HIV is not considered
to be a danger to public
health and safety.
Therefore, having HIV
does not, in itself,
make you inadmissible
to Canada.
However, people are also considered medically inadmissible if they are
expected to place an excessive demand on health and/or social services
compared to the average Canadian. Many people with HIV may be considered
individuals of excessive demand, due to the high cost of anti-HIV drugs. Costs
are estimated over a 10-year projected period, which increases the likelihood
that someone with HIV will start on anti-HIV drugs and incur the associated
costs during that time period.
Exemptions from medical inadmissibility
Some applicants are exempted from the excessive demand criteria.
These include:
• eligible refugee claimants and persons in need of protection;
• sponsored immigrant applicants who are the spouse, common-law
or conjugal partners of a Canadian resident;
• dependent children (under 22 years of age and single) of a
Canadian resident.
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17
IMMIGRANTS,
REFUGEES AND
The excessive demand rule will not apply to people in these categories.
In other words, they are not considered medically inadmissible and may still be
eligible for admission to Canada regardless of the costs they might place on
the health and social system.
A spouse can be of the same or oposite sex. Partners can be of the same
NON-STATUS PEOPLE
or the opposite sex, and include common-law partners who have lived together
WITH HIV
in a relationship for more than a year, and conjugal partners who have been in
a relationship for more than a year, but who live in different countries.
Visitors, students and people on work visas
A medical exam, including an HIV test, is needed in order to obtain a visa for
people who:
• apply to come to Canada to work or study or as a visitor and who plan
If you have filed
to stay in Canada for more than six months;
and/or
a refugee claim
• have spent more than six months of the preceding year in a designated
and received an
country (a country that has a higher incidence of serious communicable
acknowledgement of
the claim from
Citizenship and
Immigration Canada,
you can get medical care
diseases than Canada). Citizenship and Immigration Canada (CIC)
keeps a list of designated countries on its Web site at:
www.cic.gc.ca/english/information/medical/dcl.asp
Visitors or people applying for study or work visas who test HIV-positive may
be rejected on the ground of medical inadmissibility. Visitors who intend to
stay for less than six months, or who are coming from a country not on the
designated country list, will probably not need to have a medical examination.
through the Interim
Federal Health program.
Services available
to immigrants, refugees
and non-status people with HIV
Access to medical care
Access to medical care depends on your status in Canada. For refugee applicants, if you have filed a refugee claim and received an acknowledgement of
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the claim from Citizenship and Immigration Canada, you can get medical care
through the Interim Federal Health program. The Interim Federal Health program
is paid for by the federal government and will cover emergency and essential
health services, including birth control, prenatal and obstetrical care, medications
and emergency dental services. It will also cover the cost of the immigration
17
IMMIGRANTS,
REFUGEES AND
NON-STATUS PEOPLE
medical examination.
The Interim Federal Health program is only available to people applying for
WITH HIV
refugee status as a Convention refugee or as a person in need of protection. It
is not available to people applying as an immigrant. It is also not available to a
visitor, student or people on work visas. The Interim Federal Health coverage
If you are applying as an
usually has an expiry date and you will need to apply for renewal before it
immigrant, student or
expires. You will be eligible to reapply for coverage under Interim Federal Health
visitor, you will not be
for as long as your refugee claim is still in progress. This includes the stages of
judicial appeal after a failed claim. See Chapter 20, Money matters, for more
information on the Interim Federal Health program.
If your refugee claim is successful, you will then be eligible to apply for
healthcare coverage under your provincial health insurance plan. The provincial
eligible for either the
Interim Federal Health
program or provincial
health insurance plan should cover the costs of all health services, including
healthcare coverage. You
medical tests, but not necessarily the cost of all drugs. In some provinces,
will need to pay for
there may be a three-month waiting period before new applicants can get coverage through the provincial health plan (see Chapter 19, Access to treatment).
If you are applying as an immigrant, student or visitor, you will not be
health services and drugs
either through private
eligible for either the Interim Federal Health program or provincial healthcare
insurance or out of your
coverage. You will need to pay for health services and drugs either through
own pocket.
private insurance or out of your own pocket. Some categories of workers who
are admitted to Canada on work permits may be eligible for provincial health
coverage. In some provinces, government-funded community health centres or
health service organizations will provide free medical services to people without
healthcare coverage. However, these agencies often have very limited resources
and very specific criteria as to who can use these services. Your local AIDS
service organization may be able to direct you to health services in your area if
you are not eligible for government health insurance coverage.
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17
IMMIGRANTS,
Access to anti-HIV drugs
Access to anti-HIV drugs will depend on your status in Canada.
• For refugee applicants, the Interim Federal Health program (see page
243) will cover all needed anti-HIV drugs.
REFUGEES AND
• If you are applying as an independent or sponsored immigrant, student,
NON-STATUS PEOPLE
worker or visitor, you will not be eligible for coverage for anti-HIV drugs
WITH HIV
and will need to get drugs through private insurance, or pay for them out
of your pocket.
If you are getting
government social
assistance or disability
• If you are getting government social assistance or disability benefits, your
drugs will be covered. These benefits may be available to applicants who
have a temporary resident permit, or who apply for status on humanitarian
and compassionate basis.
benefits, your drugs
will be covered.
A model for people who have problems
getting anti-HIV drugs
In Ontario, various HIV service providers have formed a coalition called
the Committee for Accessible AIDS Treatment. This group has developed
a streamlined compassionate treatment access program to assist people
with HIV who have problems getting anti-HIV drugs. This program
assists doctors and people with HIV with all the needed paperwork to
get compassionate access to anti-HIV drugs. It also links people with
HIV to proper legal and social support to help them get long-term
healthcare and drug coverage.
For more information, contact the Committee for Accessible AIDS
Treatment at: www.hivimmigration.ca.
Sometimes, when your immigration status changes, your ability to get
access to anti-HIV drugs will be disrupted. This disruption can happen for a
variety of reasons during your immigration or refugee application process. This
could happen, for example, in the period when you are waiting for your refugee
claim to be acknowledged but before the Interim Federal Health program
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WWW.CATIE.CA • 1.800.263.1638
coverage starts, or after you have become a landed immigrant but while you
are waiting for the province to provide coverage.
Since disruption of anti-HIV drugs can cause drug resistance and treatment
failure, please talk to your healthcare providers and counsellors to try to get a
continuing supply of your drugs before you start treatment. Try to plan ahead
if you know that your status or coverage for drugs may be changing. Your
healthcare providers and local AIDS service organizations may know of ways to
17
IMMIGRANTS,
REFUGEES AND
NON-STATUS PEOPLE
WITH HIV
get a short-term supply of drugs to help you get through those transition periods.
Compassionate access to anti-HIV drugs
Try to get a
Many pharmaceutical (drug) companies will consider providing a short-term,
continuing supply of your
free supply of drugs on compassionate grounds to people who need them.
drugs before you
This usually requires a formal letter of request from your doctor. Typically, the
letter must explain why you need short-term free drugs, and an assurance that
start treatment.
you will have some form of long-term coverage within a reasonable amount of
Your healthcare providers
time (usually less than six months to one year). The drug company will likely
only supply the drugs one month at a time and your doctor will need to renew
and local AIDS service
organizations may know
the request monthly.
For more information about compassionate access, see Chapter 19,
Access to treatment.
of ways to get a shortterm supply of drugs to
help you get through
Legal support
Proper legal support is one of the most important factors affecting the outcome
those transition periods.
of your immigration application. A good lawyer should spend the time to explain
your options, provide you with information to help you decide which option to
apply for, help you with documents, interviews and hearings, and review your
options if you encounter difficulties or rejection during the application process.
Your immigration lawyer should give you an estimate of his or her fees, a clear
explanation of what services the fees cover, and let you know if he or she would
accept payment through legal aid.
As a person with HIV, it is important, if possible, to find an immigration
lawyer with special knowledge and experience with HIV-related immigration
policies. You will also need a lawyer you can feel comfortable with and trust in
MANAGING YOUR HEALTH
245
17
order to disclose your full situation, including HIV status. To help yourself find a
good, HIV-knowledgeable immigration lawyer, you can try contacting your local
AIDS service organization (or, in Ontario, special HIV legal clinics), for references.
IMMIGRANTS,
It is also helpful to ask other people with HIV, especially those from your
REFUGEES AND
own ethno-racial background or your country of origin. Try to find out the
NON-STATUS PEOPLE
WITH HIV
experiences they have had with specific immigration lawyers in dealing with
their cases.
There are different ways of getting legal services if you cannot pay for
them. You can apply for legal aid through provincial legal aid agencies, or you
Proper legal support
is one of the
most important
can try to access legal help through community-based legal clinics.
You can apply for legal aid even if you do not have any status in Canada.
Legal aid may provide you with financial assistance to pay for the service of a
lawyer, but you will need to go to a legal aid office and make an application in
factors affecting the
writing. They will ask you a lot of questions, so call first to find out what you
outcome of your
need to take. Legal aid will assess your financial situation and the nature of
immigration application.
your legal matter in order to decide whether they will give you a legal aid certificate. If you are given a legal aid certificate, you will be able to hire a lawyer who
will bill legal aid for the services.
If you are worried about being personally identified by applying to legal aid,
As a person with HIV,
you can try calling some of the community legal clinics first and get some advice
over the phone.
it is important, if
possible, to find an
immigration lawyer with
special knowledge
Alan Li would like to thank:
Michael Battista, Avvy Go, Maureen Owino, Geraldine Sadoway, Derek
Thaczuk and Josephine Wong for assisting with resource information,
feedback and editing.
and experience with
HIV-related
immigration policies.
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Resources
Uprooted Lives
Positive Side article on immigrants and refugees living with HIV
in Canada—includes resource list.
(www.positiveside.ca/e/V8I1/Uprooted_e.htm)
Treat HIV Globally
17
IMMIGRANTS,
REFUGEES AND
NON-STATUS PEOPLE
WITH HIV
Multilingual treatment information (www.treathivglobally.ca)
Citizen and Immigration Canada
Information about refugee assistance programs (www.cic.gc.ca)
(For a list of designated countries for immigration medical examinations see
www.cic.gc.ca/english/information/medical/dcl.asp)
The Canadian HIV/AIDS Legal Network
Legal information related to HIV and immigration (www.aidslaw.ca)
Committee for Accessible AIDS
Treatment access related to immigrant, refugee and non-status people
with HIV (www.hivimmigration.ca)
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
NOTES
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NOTES
IMMIGRANTS,
REFUGEES AND
NON-STATUS PEOPLE
WITH HIV
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18
CONTENTS
HIV and aging
It’s very good news that people with HIV are paying
attention to issues around aging. It means we are
surviving and getting older like the rest of the population!
Sometimes it’s hard to tell whether a symptom is due to
HIV or aging. We need to take good care of ourselves,
be proactive and pay attention to changes in our bodies
as we age.
This information is just for you, but also see other
chapters of Managing your health that apply to all
people with HIV.
• The challenge of HIV in
an aging population
• Is it HIV or is it age?
• Screening tests
• Coping with loss
• Financial issues
About the author
Kath Webster, a native of Vancouver, B.C., has been
living with HIV for more than 20 years. She is a volunteer
with the Treatment Information Program at the B.C.
Persons with AIDS Society and is on the board of
directors for the Positive Women’s Network.
MANAGING YOUR HEALTH
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HIV AND AGING
The challenge of HIV
in an aging population
Thanks to advances in treatment, people with HIV are living much longer than
ever before. It is estimated that up to 12 per cent of people with HIV in Canada
are older than 50 years of age; this number is expected to increase by as much
as 20 per cent over the next decade.
It is estimated that up
to 12 per cent of HIVpositive people in Canada
are older than 50 years
of age; this number is
expected to increase by
as much as 20 per cent
over the next decade.
Unfortunately, the number
Unfortunately, the number of people older than 50 who are newly diagnosed
with HIV is also growing. In many cases, the person has been living with HIV
for some time without knowing it, giving the disease a chance to advance
significantly and making it more challenging to find effective treatment. This
trend towards a late diagnosis in older people signals the need for better
understanding of sexual activity and injection drug use in the over-50 population
and the need for better prevention education for this age group.
Clearly, early diagnosis of HIV infection is important no matter what your
age. Early diagnosis becomes even more critical the older you are, however,
as HIV progresses more quickly with age. The good news is that anti-HIV drugs
appear to work just as well whether you are 52 years old or 25. And studies
show that age and better control of HIV seem to go hand in hand. Those who
of people older than 50
are HIV-positive later in life tend to achieve and maintain an undetectable viral
who are newly
load more often than do younger people with HIV, possibly because they are
diagnosed with HIV is
also growing.
better at following treatment instructions. An undetectable viral load means
that the number of viral particles in the blood is lower than can be detected
by tests.
Overall, the issues associated with treatment of HIV become more complex
with age. This is because the chances of having other diseases that also
require treatment, including high blood pressure, arthritis or even cancer, also
increase with age. Taking several different drugs at the same time can raise
Anti-HIV drugs appear
to work just as well
whether you are 52
years old or 25.
250
your risk of drug interactions, side effects and toxicities. And while careful monitoring of all drugs is essential, this is especially true when you are 50 or older.
The side effects of anti-HIV drugs, discussed in Chapter 11, Side effects
and symptoms, don’t appear to occur more often in people with HIV as they
get older, but they can be made worse by the side effects of other non-HIV
WWW.CATIE.CA • 1.800.263.1638
drugs. Decreases in kidney and liver function that come naturally with age also
increase the potential for higher drug toxicity, as can changes in hormone levels
and metabolism, as well as weight loss associated with aging.
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HIV AND AGING
Is it HIV or is it age?
Many of the health changes that occur with aging can be similar to the symptoms of HIV as well as to the side effects of HIV treatment. Let’s take a look at
some of the health conditions associated with both age and HIV.
Overall immune system decline
As you age, your immune system becomes less effective at protecting your
body from infection and disease. This is why HIV progresses more quickly in
people who are older and why early diagnosis of HIV is so important.
Cardiovascular (heart) disease
Cardiovascular disease is a broad term that includes coronary heart disease,
heart attack and stroke. It is often referred to as heart disease. As you age, the
risk of developing heart disease increases, whether you are HIV-positive or not.
Women older than 55 and men older than 45 are at higher risk of developing
heart disease. If you have other members in your family who have heart disease—
a father, a mother, an uncle or a sibling, for instance—your risk of developing
heart disease will be higher than the person who doesn’t have a family history.
As you age, your immune
system becomes less
effective at protecting
your body from infection
and disease.
While you can’t control risk factors for heart disease such as your age and
family history, there are many lifestyle risk factors you can control. These include:
• smoking;
• being overweight;
• lack of exercise;
• poor diet;
• excessive alcohol intake;
• high blood cholesterol and blood lipids or fats;
• diabetes;
• high blood pressure or hypertension.
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HIV AND AGING
The relationship between HIV and heart problems is not fully understood but is
being studied. However, some studies show that anti-HIV drugs such as some
protease inhibitors can increase the risk of heart problems by raising the level
of cholesterol and triglycerides in the blood (see Chapter 11, Side effects and
symptoms). Other research suggests that HIV itself causes heart problems. In
either case, it is clear that the benefits of anti-HIV treatment far outweigh the
risks of heart disease.
Some studies show that
anti-HIV drugs such as
some protease inhibitors
can increase the risk of
heart problems by raising
the level of cholesterol
and triglycerides in
the blood.
Healthy heart habits
Lower your risk for heart problems by adopting the following lifestyle changes:
• eat a healthy diet;
• exercise regularly—especially aerobic or cardio exercise;
• quit or cut down on smoking;
• drink alcohol in moderation;
• avoid cocaine, crack cocaine, crystal meth, ecstasy, ketamine and GHB;
• talk to your doctor about supplements such as anti-oxidants and
B vitamins.
For more information on healthy lifestyle changes, see Chapter 4,
Healthy living.
Early menopause
For most women, menopause occurs between the ages of 45 and 55. During
Menopause appears
to occur earlier in some
women with HIV.
this time, the production of female hormones (estrogen and progesterone)
declines, eventually causing menstruation (periods) to stop completely.
Although the impact of menopause on women with HIV has not been well
studied, menopause does appear to occur earlier in some women with HIV.
Just why is not clear, but there are many possible factors in addition to treatment.
They include:
• a low red blood cell count or anemia;
• decreased production of the hormones estrogen and progesterone;
• weight loss;
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• reduced CD4+ cell count;
• use of street drugs, such as heroin and methadone.
Menopause brings with it an increased risk of some health problems, including:
• cancer of the breast, lung or ovaries;
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HIV AND AGING
• emphysema and other lung diseases;
• osteoporosis;
• cardiovascular (heart) disease.
Many of the symptoms of menopause and HIV overlap. This can result in a
missed or late diagnosis of HIV or difficulty determining the cause of symptoms.
They include:
• hot flashes;
• night sweats;
• skin and hair changes;
• trouble sleeping;
• forgetfullnes;
• fatigue;
• emotional changes/depression.
Talk to your doctor if you have a family history or concerns about any of these
health conditions or menopause symptoms (see Chapter 15, HIV and women).
Research suggests that
Bone disorders
up to one-third of people
Your bones are living and growing. The strength of your bones, or bone density,
is determined by the amount of calcium, phosphorous and other minerals
with HIV may have
early-stage bone loss
they contain.
When you have HIV, your risk of some bone disorders increases, whether
or osteopenia.
or not you are on treatment. Research suggests that up to one-third of people
with HIV may have early-stage bone loss or osteopenia.
Age is also a risk factor for bone problems, as is gender. Women, for
instance, have a higher risk than men of osteoporosis, a bone disease that
causes bones to become thin and fragile and to break easily, particularly at the
hip, spine and wrist. This is partly because women have 30 per cent less bone
mass than men. But women are also particularly vulnerable to osteoporosis
after menopause, when the hormone estrogen—a key factor in maintaining
MANAGING YOUR HEALTH
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HIV AND AGING
bone strength in women—is no longer produced by the ovaries. On the other
hand, HIV appears to cause more bone loss in men than in women, cancelling
out or even reversing the advantage that men usually have.
Other risk factors for both men and women include a family history of
osteoporosis, smoking and a sedentary lifestyle. See Chapter 11, Side effects
and symptoms, for more information on bone disorders.
Keeping bones strong
Since the exact cause of bone disorders in people with HIV is not
known, preventing bone loss is the best strategy. Here’s how:
• eat a healthy diet;
• increase daily intake of calcium and vitamin D3;
• get lots of weight-bearing exercise, such as walking, running, hiking or
weight training;
• limit or eliminate your intake of caffeine, cigarettes and alcohol.
Cancer
Before HAART was introduced in the mid-1990s, the most common cancers
in people with HIV were the HIV-related cancers, including Kaposi’s sarcoma,
non-Hodgkin’s lymphoma and cervical cancer (see Chapter 12, HIV-related
The chances of
developing both
HIV-related and
non-HIV-related cancers
increases as you age.
infections and cancers). Now, thanks to more effective HIV treatment, these
cancers are less likely to occur when you have HIV.
On the other hand, the chances of developing both HIV-related and nonHIV-related cancers increases as you age. Both men and women older than
50 are at an increased risk of developing colon and/or rectal (colorectal) cancer,
for instance. In fact, some research indicates that age-related cancers are more
common than HIV-related cancers among persons on HIV treatment.
Other non-HIV-related cancers seen in people with HIV 50 years of age
and older include:
• skin cancer;
• lung cancer;
• prostate cancer;
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• anal cancer;
• liver cancer (mostly in those who are co-infected with hepatitis C).
Diabetes
18
HIV AND AGING
Insulin is a hormone produced by the pancreas to control the amount of sugar
or glucose in the blood. Diabetes occurs when your pancreas cannot make
enough insulin.
There appears to be a link between treatment with anti-HIV drugs and a
rise in blood sugar levels leading to diabetes (see Chapter 11, Side effects and
symptoms). There are numerous lifestyle measures that can help you keep your
blood sugar levels within the range of normal.
• Limit the amount of sugar and starchy foods in your diet, such as
desserts, soft drinks, white rice or potatoes.
• Choose whole grains and unprocessed foods that contain fibre, such as
barley, brown rice and oats as healthy grain choices.
• Eat smaller amounts.
• Eat a balanced diet, including healthy protein sources such as lean
There appears to be a
link between treatment
with anti-HIV drugs
and a rise in blood
sugar levels leading
to diabetes.
meats and at least two servings of fish per week.
• Exercise as often as possible, ideally every day (see Chapter 4, Healthy living).
Are you at risk of diabetes?
Risk factors for diabetes include:
• older than 45;
• being overweight;
• a sedentary (little or no exercise) lifestyle;
• a family history of diabetes;
• Aboriginal, African, Latin American or Asian ethnic ancestry;
• high blood pressure (hypertension);
• high levels of cholesterol and/or triglycerides in the blood;
• co-infection with hepatitis C;
• taking anti-HIV drugs.
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HIV AND AGING
Mental health
Dementia is a brain disorder that can affect your memory and ability to think
clearly. It can have a serious impact on your daily activities, quality of life and
even your ability to live independently. Fortunately, the rate of HIV-associated
dementia has greatly declined since more effective anti-HIV drugs became
available in the mid-1990s. Nevertheless, as you age, you may be at increased
risk of developing dementia not associated with HIV (non-HIV-associated
dementia). It’s important to speak to your doctor as soon as possible if you
The rate of HIV-associated
dementia has greatly
declined since more
effective anti-HIV drugs
became available in the
mid-1990s.
become aware of early signs of dementia, such as difficulty remembering,
concentrating or completing basic tasks.
Depression is quite common in people with HIV of all ages. If you are experiencing symptoms of depression, such as fatigue, sleep problems or feeling hopeless, talk to your doctor. Some of these health problems can be caused by HIV
and treatment as well as other conditions that can occur as you age.
Depression can also be a side effect of some anti-HIV drugs as well as
other medications, such as those used to treat hepatitis C. It’s very important
to see your doctor and get treatment and support.
For more information on your emotional and mental health (see Chapter 6,
Your emotional health).
Depression is quite
Possible physical causes of depression
common in people with
HIV of all ages.
• anemia;
• low testosterone;
• low level of vitamin B12;
• low thyroid hormone levels (especially in women);
• hormonal changes for women due to pre-menstrual syndrome (PMS),
pregnancy or menopause.
Sexual health
It is possible to have a healthy and satisfying sexual life when you are HIV-positive
and when you are aging. In fact, sexual health is essential to your well-being.
Sexual problems and low libido (sex drive) can occur in men and women
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especially as we get older. It’s a sensitive issue that often gets swept under the
rug and not addressed. Some possible causes are:
• HIV itself;
18
HIV AND AGING
• drug side effects;
• hormone imbalances (including low testosterone in women);
• cardiovascular (heart) disease;
• diabetes;
• stress and depression.
It’s important to talk to your doctor about sexual problems since, in many
cases, they can be treated and you can have a satisfying and happy sex life.
For more information on how to keep your sex life happy and healthy (see
Chapter 7, Your sexual health).
It is possible to have a
healthy and satisfying
sexual life when you are
HIV-positive and when
Screening tests
you are aging.
For a list of recommended screening tests for people with HIV, see Chapter 9,
Monitoring your health.
While HIV is monitored using routine tests, additional tests may be required
to monitor your health status as you get older. These tests include:
• Bone density scan A scan of your lower spine and hip measures your
bone density and is recommended every two years.
• Fasting blood glucose test A blood test for diabetes is recommended
every three to six months.
Additional tests may
be required to monitor
your health status as
you get older.
• Lipid profile test These blood tests check total cholesterol, LDL (bad
fats), HDL (good fats) and triglycerides. They are recommended one to
two times a year, depending on your risk factors for heart disease.
• Kidney function test Kidney function declines with age, and certain
anti-HIV drugs are processed through the kidneys. For both these
reasons, a blood and/or urine test is recommended periodically.
Speak to your doctor.
• Blood-pressure monitoring A blood-pressure monitor measures the
force of blood against the walls of the arteries and indicates your risk of
developing heart disease.
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• Colorectal cancer screening A few tests can detect cancer of the
colon or rectum. Tests can include a digital rectal exam, stool test or a
scope inserted into the rectum. Your doctor will advise you on how often
you should be screened.
For women only
• Pap test A Pap test collects cells from the cervix for examination under
a microscope. It is used to detect changes that indicate the presence
of cancer or changes that may lead to cancer. It is recommended that
sexually active women with HIV have Pap tests every six months to
a year.
• Breast exam In order to detect possible early signs of breast cancer,
your doctor will check for lumps or other abnormalities in your breasts,
nipples and armpits. A breast exam is recommended once a year, usually
combined with your Pap test.
• Mammogram A mammogram uses a low-dose X-ray to examine each
breast. It is used to look for different types of tumours and cysts. It is
Many people with HIV
are now living long
enough to experience
recommended once a year for women over 40.
• Pelvic exam A pelvic exam is a physical examination of the internal and
external pelvic organs. It is usually combined with a Pap test every six
months to a year.
middle age and beyond.
For men only
• Prostate exam A manual digital exam of the rectum is recommended
yearly for men over 40. Your doctor may also order a PSA blood test,
which screens for prostate cancer.
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Coping with loss
It is wonderful and even miraculous that many people with HIV are now living
long enough to experience middle age and beyond. Living with a chronic illness
such as HIV can be difficult at the best of times, however, and this can affect
18
HIV AND AGING
your quality of life. Losses you may have experienced as a result of being
HIV-positive, such as the loss of health, employment, income, youthful good
looks—even the loss of friends who have died because of AIDS—can be
devastating. Here are some ways to combat isolation and improve your overall
quality of life:
• get involved in your community;
• create a strong social and support network;
• exercise your mind and keep mentally active;
• manage stress and depression;
• eat a healthy diet;
• sleep well;
• get outdoors and exercise physically;
• cultivate a positive outlook;
• quit smoking;
• avoid excessive alcohol;
• have a spiritual practice;
• have a healthy sexual relationship.
Financial Issues
When you reach 65, you may find yourself with a reduced income. Government
disability or private insurance benefits may cease and you may need to live on
an even stricter budget. This can cause much stress and anxiety. It’s important
to seek support from your local AIDS organization or other appropriate supports.
For more information on financial issues related to living with HIV, see Chapter
20, Money matters.
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Resources
The Positive Side
Health and wellness magazine contains articles about aging, such as:
• Growing old gracefully
Look in the e-zine index (www.positiveside.ca)
Canada’s Physical Activity Guide to Healthy Active Living
(www.phac-aspc.gc.ca/pau-uap/fitness/downloads.html)
HIV Wisdom for Older Women
Website dedicated to the prevention of HIV in older women and to life
enrichment for those who are living with HIV (www.hivwisdom.org)
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
NOTES
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HIV AND AGING
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Access
to treatment
Fortunately for people with HIV in Canada today,
there are a number of effective anti-HIV drugs available.
Sometimes access to these treatments is as easy as
seeing your doctor, getting a prescription and having
it filled at your local drugstore. But sometimes it is not.
This chapter will help you navigate the systems and
processes that make prescription drugs and other
treatments available to Canadians.
About the author
Louise Binder is a Canadian HIV-positive lawyer who
was diagnosed in 1993. In 1997, she helped to found
19
CONTENTS
• How drugs are approved
for sale in Canada
• How to access approved
prescription drugs
• How to access
unapproved drugs
• How to access
non-prescription
medications and other
kinds of treatment
the Canadian Treatment Action Council, which does
systemic advocacy for access to treatments. She is
also a member of the Community Advisory Committee of the Canadian
HIV Trials Network and many other HIV organizations.
Louise has been involved in many of the important advocacy struggles
of this community, including the battles to save, and then increase, Canadian
federal funding for HIV/AIDS; to get timely access to safe and effective drugs
at the federal and provincial government levels; and to ensure earlier access
to drugs in development by the pharmaceutical industry.
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How drugs are approved
for sale in Canada
All drugs in Canada, whether prescribed by a healthcare provider or bought
over the counter, must first be approved for sale by the federal government.
The federal health ministry, known as Health Canada, is responsible for ensuring
all drugs sold are safe, effective and of good quality. Health Canada also
ensures all “biologics” (drugs and vaccines derived from living sources, such
as interferon for hepatitis C), natural health products (such as vitamins,
Health Canada, is
responsible for ensuring
all drugs sold are
supplements and herbal therapies), cosmetics and medical devices are safe
and effective.
Before being approved for sale, prescription drugs must undergo thorough
clinical trials in Canada and/or abroad to ensure they work (that is, they are
safe, effective and of
effective), and are safe and to find out if they interact with other drugs. These
good quality.
trials are reviewed by Health Canada as part of its decision-making process.
It is very important to recognize that clinical trials do not mean that a specific
drug or other treatment will be safe for everyone all the time. Clinical trials test a
drug over a limited time and usually in limited populations, so it is only possible
to get a better picture of how safe and effective a drug is when it has been in
Before being approved
use for a longer time in the general population.
for sale, prescription
drugs must undergo
thorough clinical trials in
How to access approved
prescription drugs
Canada to ensure they
A prescription drug can only be obtained by a prescription from a doctor or
work, are safe, and to
other licensed healthcare provider. Prescription drugs can only be bought
through a licensed pharmacist in a drugstore or in a hospital. Internet pharmacies
find out if they interact
also sell some drugs, but you need to be careful to ensure that the Internet
with other drugs.
pharmacy is legal. Not all of them are. If you are uncertain, check with your
provincial pharmacists’ association, doctor, healthcare provider or local AIDS
service organization.
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Anti-HIV drugs are expensive and the issue, as with all drugs, is who will
pay for them. Some Canadian people with HIV have private insurance plans
that pay for all or part of their prescription drugs. A few people may be able to
pay cash for their drugs, but most people cannot afford to do so. As a result,
19
ACCESS TO TREATMENT
all provinces and territories have created public drug coverage plans to assist
with the payment of certain drugs and treatments.
Provincial and territorial drug coverage programs
Each province and territory in Canada has a different program for subsidizing
drug costs for their residents. These programs have different criteria for deciding
Each province and
who is eligible for coverage, how much the province or territory will pay and what
territory in Canada has a
drugs are covered. The programs may be complicated to understand without
the help of your local AIDS service organization. Generally, the publicly funded
different program for
provincial and territorial drug programs offer coverage for people on social assis-
subsidizing drug costs
tance (“welfare”) and for seniors over the age of 65. Some provinces issue cards
for their residents.
to show to your pharmacist that prove you are entitled to this type of coverage.
Some provinces and territories offer assistance to cover costs for other
citizens who have high drug costs but little or no private insurance. This is often
referred to as a catastrophic drug program. The availability of such programs
varies among provinces and territories, so check with your local health authority
or your local AIDS service organization to learn about whether you are eligible
for coverage.
Each province and territory has found different ways to contain the cost of
drugs. There are a number of ways to do this:
• limit the list of drugs that the province or territory will pay for;
• require the consumer to pay a deductible (usually income based) as part
of public catastrophic drug coverage;
• pay for only the cheapest drug in a class of drugs and require the person
wanting a more expensive drug of the same class to pay for all or some
of it.
For people who meet the criteria for partial or full coverage, the provincial and
territorial governments each create a list of drugs and treatments they are willing to subsidize (often called a drug formulary). Generally, governments make
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the decisions on which drugs to include in the formulary with the help of information provided by independent medical and economics advisors.
Recently, in order to try to get more consistent coverage for people across
the country and to save time in decision making, nine of the 10 provinces
(Quebec does not participate) and the federal government agreed to set up a
common drug review process. This process is managed by the federal government but paid for jointly by the provinces and federal government. This process
makes recommendations to the provinces and territories about what to cover.
These decisions about what to recommend are based on the advice of an
expert drug advisory committee; committee members weigh whether it is cost
effective for the government to pay for the residents of a province or territory to
receive a particular drug.
The provincial, territorial and federal governments do not, however, have
Each province or territory
makes its own decision
about which drugs
and other treatments
it will cover.
to accept the recommendation of the expert drug advisory committee and
sometimes do not. The creation of the common drug review has not yet
achieved consistent access across the country.
Each province or territory makes its own decision about which drugs and
other treatments it will cover. The decision is based mainly on economic factors,
including its drug budget, population base, number of eligible residents with
each disease or condition, as well as the cost of treatments and choice of
treatments available. Thus, we have a patchwork quilt of public drug coverage
across the country. You need to check the coverage in your province or territory
and any conditions for coverage.
You can contact CATIE for more information on drug coverage plans
across Canada.
Some people are covered
Federal government drug coverage programs
Some people are covered under plans set up by the federal government.
under plans set up by the
These people include refugees, members of the military, federal government
federal government.
employees and retirees, federal prisoners and designated Aboriginal people
who are living on reserves.
Because of the legal relationship between Aboriginal people and the federal
government, access to treatments for First Nations, Métis and Inuit peoples
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may involve a different process than described above, particularly for Aboriginal
people living on reserves. The Non-Insured Health Benefits Program is a national
health program administered specifically for eligible members of the First Nations
and Inuit. It is a supplemental program designed to meet medical, vision and
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ACCESS TO TREATMENT
dental needs not covered by provincial or territorial insurance plans or private
insurance companies For more information, see Chapter 20, Money matters.
Prisoners in federal and provincial prisons should receive the same standard
of care for HIV treatment as everyone else. In practice, however, it is common
for problems to occur in ensuring an uninterrupted supply of anti-HIV drugs to
people with HIV in the prison system. There are many causes for this. Prisons
may run out of HIV drugs; prisoners may be transferred from one institution
where drugs are available to another where they are not; and discharge planning
for prisoners being released is often not well organized. The Prisoners AIDS
Support Action Network assists prisoners with HIV treatment access issues.
Specific rules regarding access to treatments for immigrants, refugees and
undocumented people are set out by the federal government. If you have filed
a refugee claim and received an acknowledgement of the claim from Citizenship
and Immigration Canada, you can get medical care through the Interim Federal
Health program. For more information, see Chapter 17, Immigrants, refugees
and non-status people with HIV, and Chapter 20, Money matters.
Private healthcare insurance coverage
Some people have a private drug plan, which may be either a group or individual
plan. Each plan decides what drugs and treatments to cover, often guided by
Some people have a
private drug plan, which
may be either a group or
individual plan.
the list of treatments covered by the provincial or federal drug formulary. Check
the contents of your plan to be sure. If you have an employer plan, the human
resources person where you work can provide this information. You are entitled
to it. You can also obtain it from the insurance company providing the coverage.
Generally, only prescription drugs are covered, but some plans cover some
over-the-counter medications if you have a prescription from your doctor.
However, this means you must obtain the drug from a pharmacist and pay a
dispensing fee.
Private plans may also cover additional health-related costs, such as dental
work, massage and chiropractic services. If you have short- and/or long-term
MANAGING YOUR HEALTH
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sickness and disability coverage, medical coverage may also continue in whole
or part during the time of your absence from work. Check your plan to see if it
covers such costs.
ACCESS TO TREATMENT
Hospitals and clinics
You do not have to pay for drugs given to you while in hospital. However, the
hospital may use generic drugs and if you want the brand name drug, you may
have to pay for it out of pocket.
There are some clinics where some treatments may be obtained at no cost.
You do not have to pay
Your local AIDS service organization can generally help you find these clinics.
for drugs given to you
while in hospital.
Ensuring continuous coverage when you move
If you are moving from one province or territory to another, or from federal to
provincial/ territorial coverage, you need to check the rules for coverage in the
new location as these may be quite different. The drugs you use may not be
covered or there may be different financial arrangements for coverage. Some
provinces will only pay for drugs if a healthcare provider in that province has writ-
If you are moving from
ten a prescription. There may be other restrictions you will need to be aware of.
It may take several months to meet the residency requirements for coverage
one province or territory
in your new location. If you are moving from one province or territory to another,
to another, it is a good
it is a good idea to make sure you have enough drugs for at least three months
idea to make sure you
to ensure you do not run out before you are able to access the services in the
have enough drugs for at
new area. Check to see whether your former location will provide any coverage
after your move until you are covered in the new area.
least three months to
ensure you do not run
If you have no drug coverage
If you are not covered by a drug plan, you can pay for drugs yourself, but few
out before you are able
people can afford this. If you have no health coverage, check with your local
to access the services in
AIDS service organization and healthcare provider to determine what options
the new area.
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How to access unapproved drugs
Unapproved drugs are those which have not been reviewed and approved by
Health Canada for sale. Depending on the circumstances, it may be possible to
obtain access to these drugs on a temporary or permanent basis.
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ACCESS TO TREATMENT
The federal government’s Special Access Program
Health Canada’s Special Access Program provides access to drugs and
medical devices not available for sale in Canada. Your doctor must apply to the
Special Access Program on your behalf and the drug company must agree
to provide the drug to you. The Special Access Program must also agree to
Health Canada’s
supply it to you. The drug company can agree to provide it for free or to charge
Special Access Program
you for the drug. If you are required to pay, neither the provincial, territorial,
provides access to drugs
federal, nor private health plans will generally reimburse you for the drug. You
should check with your drug coverage plan to see if they will reimburse you.
If you need a drug that has not been approved for sale here but is available
elsewhere, speak to your doctor.
and medical devices
not available for sale
in Canada.
Clinical trial participation
Pharmaceutical (drug) companies often have clinical trials of their drugs that
give eligible participants access to drugs that are not yet approved or widely
available. Clinical trials test the drug in humans for safety, effectiveness, quality
and other aspects. Clinical trials have eligibility criteria and usually restrict the
number of people who can participate. If you are interested in taking part in a
Pharmaceutical (drug)
clinical trial, you should discuss this possibility with your doctor.
companies often have
If you do join a clinical trial, be sure to understand and sign the informed
consent form before entering the trial. This form outlines the conditions of the
clinical trials of their
trial and, in particular, the risks to you of participation. Also be sure to discuss
drugs that give eligible
how, if the drug works for you, you can continue to have access to it after the
participants access to
trial has finished until you are able to get it through your drug plan. If there is
agreement by the drug company to continue to provide the drug after the trial
ends, a statement to this effect must be in the informed consent that you sign.
Many drug companies now provide an expanded access arm to their clinical
drugs that are not
yet approved or
widely available.
trials. An expanded access arm is a group of people who are part of the trial
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ACCESS TO TREATMENT
but for whom the eligibility criteria for the trial do not apply. Usually, eligibility for
the expanded access arm is based on the recommendation of your doctor.
Read the informed consent form for this arm of the trial carefully to ensure
that you understand the conditions for continued eligibility. Ensure that if you
benefit from the treatment you will be able to obtain it after the expanded
access arm of the trial ends until you are able to get it through your drug plan.
Compassionate access
Compassionate access generally refers to a situation where an experimental
Compassionate access
drug is provided to someone who is very ill and the experimental drug is a last
generally refers to a
chance to try to improve the person’s health. While drug companies generally
situation where an
do not have formal compassionate access programs, they may be willing to
experimental drug is
provide a drug to a doctor who has a patient in this situation. Should you be
in this situation, discuss compassionate access with your doctor.
provided to someone
who is very ill and the
experimental drug is
a last chance to try
to improve the
person’s health.
How to access non-prescription
medications and other kinds
of treatment
Non-prescription treatments—including non-prescription medications
(also called over-the-counter drugs), complementary and alternative therapies,
and vitamins and supplements—are not usually covered by provincial, territorial
or federal plans, except in the most unusual of situations. See Chapter 5,
Complementary and alternative therapies, for more information on available
treatments. However, some provinces and territories may cover some non-prescription treatments specifically for people with HIV. Check with your local AIDS
service organization to see if you can access this coverage. Some private drug
plans will provide limited coverage for non-prescription treatments if they are
“prescribed” by a licensed healthcare provider and dispensed by a pharmacist.
In that case a dispensing fee must be paid, increasing the cost of the drug
or treatment.
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Some tax relief may be available for the purchase of non-prescription treatments, so keep your receipts and check with an accountant or other tax
expert. Some AIDS service organizations have tax clinics where you can get help
with this (see Chapter 20, Money matters).
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ACCESS TO TREATMENT
Some AIDS service organizations provide limited funds to cover purchases
of over-the-counter drugs or vitamins and supplements. Check with your local
AIDS service organization to see if such funds exist.
Some tax relief
Resources
Federal, Provincial and Territorial Drug Access Programs
Information about drug benefit programs across Canada
Canadian Treatment Action Council (CTAC)
National non-governmental organization with a mandate to support access
may be available for
the purchase of
non-prescription
to treatment issues (www.ctac.ca)
treatments so keep your
Health Canada’s Special Access Program
receipts and check with
(www.hc-sc.gc.ca/dhp-mps/acces/drugs-drogues/index-eng.php)
Clinical Trials: What You Need to Know
Plain language information about clinical trials, including their aims,
an accountant or other
tax expert.
procedures, risks and benefits from the Canadian HIV Clinical Trials
Network. This website also includes a listing of clinical trials currently
enrolling in Canada. (www.hivnet.ubc.ca)
Prisoners AIDS Support Network (PASAN)
Assists prisoners with HIV treatment access issues (www.pasan.org)
PASAN accepts collect calls from prisoners across Canada
at 1-416-920-9567
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
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ACCESS TO TREATMENT
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20
Money matters
In this chapter you will find out about the various financial assistance programs that may be available to you if
you decide to leave work or work part time as a result
of an HIV-related illness. Deciding whether or not to
continue working, change jobs or work less is one of
the biggest decisions you can make. Drug coverage
and a secure income are crucial to your quality of life.
This chapter explores some of the options available if
you are unable to work, and suggests where you can
find more information to explore these options further.
CONTENTS
• Continuing to work after
an HIV diagnosis
• Disability programs
• Income replacement
and other financial
assistance programs
• Covering medical expenses
About the author
After his HIV diagnosis in 1996, Nitto Marquez
approached the Asian Community AIDS Services
(ACAS) for information and support. His natural leadership, insight and passion for supporting others led him
to join the ACAS board. Nitto worked for the Toronto People With AIDS
Foundation from 2001 to 2008 as intake worker, speakers bureau co-ordinator and then benefits and assistance case manager. Nitto co-founded
Gay Asians Toronto in 1980, and the Toronto chapter of the Sisters of
Perpetual Indulgence in 1981. Through his community involvement, he
touched many people and raised HIV awareness by sharing his story
publicly. Nitto died in April 2008.
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MONEY MATTERS
Continuing to work
after an HIV diagnosis
Many people now continue to work after an HIV diagnosis. But, if you have to
leave work because of an HIV-related illness, you may want (or need) to return
to work after your health has improved. However, you may have to negotiate
with your employer about time off for doctors’ appointments or for days when
you feel unwell. You may find a regular nine-to-five working day is no longer
possible, and requesting flexible working hours may be part of this negotiation.
Your financial security
is extremely important;
If your workplace has a human resources department, you can consult
with staff there, but be aware that the negotiations could become delicate and
intimidating, especially if you need to let people know you are HIV-positive.
it is even more so
Your local AIDS service organization can guide you along this process—staff
when you discover you
there have worked with clients who have made these decisions in the past.
have HIV.
Disability programs
Your financial security is extremely important; it is even more so when you discover you have HIV. Money does matter. The stress of worrying about finances
is hard enough on people in good health; these worries can affect your health
Many employers provide
at a time when you can least afford it. Creating a budget for yourself and sticking
to it will be essential if you decide to leave work for a period of time, or
some form of insurance
permanently. You will need to be realistic about the things you need and those
for a limited time or for
you can do without. Sticking to a limited budget will likely be a difficult experience,
longer periods if their
employees become
unable to work because
of ill health.
but this is a necessary adjustment to the situation of reduced income.
In this section we’ll talk about the work-related disability programs that
may be available to you if you choose to leave work after finding out you are
HIV-positive.
Short-term and long-term disability
Many employers provide some form of insurance for a limited time (short term)
or for longer periods (long term) if their employees become unable to work
because of ill health. Employees may be qualified to apply for these benefits
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once they have fulfilled their contractual obligations (such as probationary period,
required working hours and contributions to pension/disability funds). Whenever
available, this is often the best option when considering a break from work.
Most work-related short-term disability programs offer a higher percentage of
20
MONEY MATTERS
your salary—anywhere from two-thirds to full pay—than government disability
programs. Workplace disability programs may also include coverage for the
cost of your drugs and other health needs.
While some employers offer short-term disability benefits (usually to a
maximum of about three months), not all provide long-term disability options.
If you are unable to go back to work after your employer’s short-term disability
Try to find out exactly
benefits run out, and your employer does not offer long-term disability benefits,
what benefits are
you may have to look for alternative sources of income such as employment
insurance benefits or a longer-term solution such as the Canada Pension Plan
available to you through
or the Quebec Pension Plan disability program. These plans are covered in
your employer’s private
more detail on page 276.
If you do enroll in a long-term disability benefits program, your employer
disability insurance
may encourage you to apply for Canada Pension Plan or Quebec Pension
program and for how
Plan disability program as well. Usually, any money that you receive monthly
long they are available.
from a government disability plan is deducted from your private long-term
disability benefit.
Try to find out exactly what benefits are available to you through your
employer’s private disability insurance program and for how long they are
available. This information provides a good starting point for your decisions. If
you have any reservations about revealing your HIV status, it is useful to know
that you do not need to be specific about your exact medical condition. All that
is needed is your doctor’s certificate stating that you are unable to work due to
poor health.
Employment Insurance
sickness benefits are
paid to eligible applicants
Employment Insurance sickness benefits
Employment Insurance sickness benefits are paid to eligible applicants who
have to stop working because of illness for a maximum of 15 weeks. To receive
Employment Insurance sickness benefits, you must apply for the benefit and
have worked a minimum of 600 hours in the last 52 weeks (or since your last
MANAGING YOUR HEALTH
who have to stop
working because of
illness for a maximum
of 15 weeks.
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MONEY MATTERS
Employment Insurance claim). You must also provide a record of employment
from your employer and a medical certificate that confirms how long you will be
unable to work.
If you are eligible, there is a two-week unpaid waiting period before these
benefits start to be paid to you. The basic employment insurance sickness
benefit rate is 55 per cent of your average insured earnings, with a yearly maximum insurable earning. Your employment insurance sickness benefit, like regular employment insurance earnings, is taxable income. If you work while receiving this benefit, you must declare your earnings. These will be deducted, dollar
for dollar, from your benefits. You are required to provide reports to Service
Canada every two weeks to demonstrate that you continue to be eligible for
benefits. If you are still unable to return to work at the end of the period covered by your employment insurance sickness benefit, you may be able to
receive regular employment insurance benefits without a waiting period.
If you cannot continue
working at any job on
a regular basis for
health reasons, and you
For more information about applying for employment insurance sickness
benefit, visit your local Service Canada office.
Canada Pension Plan and Quebec Pension Plan
disability programs
meet the eligibility
If you cannot continue working at any job on a regular basis for health reasons,
requirements, you may
and you meet the eligibility requirements, you may be able to receive a portion
of your Canada Pension Plan or Quebec Pension Plan disability program
be able to receive a
monthly. The amount of money you will receive depends on how long you have
portion of your Canada
been paying Canada Pension Plan or Quebec Pension Plan premiums, and
Pension Plan or Quebec
how much you have paid into these plans. There is a maximum amount you
can receive from these programs each month. The rate is adjusted each
Pension Plan disability
program monthly.
January to reflect the cost of living.
Disability benefits from all other sources will be affected by the Canada
Pension Plan or Quebec Pension Plan disability program benefits you receive.
For example, provincial or private disability pensions deduct, dollar for dollar,
any amount you receive from the Canada Pension Plan or Quebec Pension
Plan. While most provincial or territorial disability benefits are non-taxable,
Canada Pension Plan or Quebec Pension Plan disability program benefits are
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taxable income. Canada Pension Plan or Quebec Pension Plan disability
pensions do not provide any other benefits (like drug coverage or health-related
devices) apart from the financial assistance, and are not guaranteed for life.
Periodic medical assessment may be required to see whether your condition
20
MONEY MATTERS
has improved enough to go back to work. Dependent children (under 18 years
of age) of Canada Pension Plan or Quebec Pension Plan disability program
recipients are also eligible to receive financial assistance from the program.
The Canada Pension Plan or Quebec Pension Plan disability program
offers a disability vocational rehabilitation program for recipients who are willing
to go back to work, if their doctors agree they can cope with a back-to-work
rehabilitation program. This program may involve returning to work at the
company where you were employed at a modified version of your previous job,
or retraining and upgrading to prepare you for a different job.
On this program, you are also allowed to earn up to a certain amount
before taxes through employment without informing Service Canada and
without losing the disability benefit. This earning is taxable income that will
need to be declared on your income tax return. Once you have earned up to
the allowable amount from working, you must inform Service Canada so their
personnel can assess your goals regarding future employment. If you are only
able to work occasionally, you may be able to earn more without compromising
your disability benefit, but it is important to inform Service Canada, as each
case is assessed individually.
If you return to full-time employment and give up the disability benefit, but
have to stop working again within five years of your return because of your
existing disability, you may request a rapid reinstatement into the program.
This rapid reinstatement will restart your Canada Pension Plan or Quebec
Pension Plan disability program benefit in less time than it took after your
initial application.
For more information on Canada Pension Plan or Quebec Pension Plan
disability program benefits, visit your local Service Canada office.
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Provincial and territorial disability programs
Unfortunately, not everyone has work-related disability plans to fall back on. In
this case, government and other financial assistance programs may be available.
Please note that all government social assistance programs have eligibility
requirements, and you must have legal status in Canada to apply.
Most provincial and territorial governments now recognize HIV as a perma-
Most provincial and
nent medical condition that makes you eligible to apply for long-term disability
benefits. The criteria for acceptance into these programs include financial eligi-
territorial governments
bility and a medical assessment process by the program’s medical adjudication
now recognize HIV as
team. Provincial disability programs are also asset-tested, which means you
a permanent medical
condition that makes
you eligible to apply
for long-term
disability benefits.
will need to prove that your financial assets at the time of application do not
exceed the maximum set out in the program’s policies.
The financial assistance offered by provincial and territorial disability programs
includes an allowance for basic needs and shelter. The amount of financial
assistance varies by province or territory, and by the number of people enrolled
as dependents within the family unit other than the main registrant. Basic dental
and vision costs are also covered by most programs, along with the cost of
prescription drugs, including most anti-HIV drugs. Many provinces provide an
extra allowance for medically required diets and cover travel costs for visits to
your healthcare providers.
Other subsidies may be available for clients with dependent children, such
Many provincial
as a winter clothing allowance, child-care costs and an allowance for newborn
assistance programs
babies. Financial assistance may also be available for assistive devices such as
recognize the episodic
nature of HIV disease
and accommodate the
possibility of returning to
full-time or part-time
employment while
receiving benefits.
278
wheelchairs or hearing aids. Decisions to provide assistance for these devices
are usually made on a case-by-case basis.
Many provincial assistance programs recognize the episodic nature of HIV
disease and accommodate the possibility of returning to full-time or part-time
employment while receiving benefits. Employment start-up benefits may be
available from your provincial or territorial social services ministry to help you
with costs of going back to work, such as the work clothes and equipment
required to fulfill the job function.
You will be required to report any earnings while receiving provincial or
territorial disability benefits and a percentage of your earnings will be deducted
WWW.CATIE.CA • 1.800.263.1638
from your monthly financial assistance payment. If you decide to go back to
work full time and give up the disability benefit, transitional healthcare benefits
may be made available until work-related or other private healthcare benefits
are in place, usually upon completion of your workplace’s probationary
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period. To find out what is available to help you get reintroduced into the
workplace, contact the ministry in your province or territory that oversees
employment issues.
If your attempt to return to work is unsuccessful and you decide to re-enroll
into the disability program, keep in mind that the procedure for reinstatement
could vary in each province or territory. Some may require that you undergo
a medical reassessment, while others provide quicker reinstatement into
the program.
For a complete list of eligibility requirements, please consult your local
Ministry of Community and Social Services, or the AIDS service organization in
your area. They may be able to assist you in filling out your application forms or
by answering questions related to your disability application.
Many employers offer
insurance to their
Income replacement and other
financial assistance programs
Group insurance
employees through
a plan in which the
premiums are paid by the
Many employers offer insurance to their employees through a plan in which the
employee through
premiums are paid by the employee through payroll deductions. Coverage will
payroll deductions.
vary from plan to plan. Some insurance plans provide wage replacement over
a short- or long-term period if you become too sick to work, and most will
provide for medical, dental, vision and hospital expenses as well as for some
complementary and alternative therapies.
Membership in most group insurance plans is voluntary, meaning that you
have the choice to apply and join, or not. It is normal procedure to undergo a
medical assessment before joining one of these plans, and being HIV-positive
may make you ineligible for some or all of the group insurance benefits. To find
out what benefits are available to you, speak directly with the human resources
MANAGING YOUR HEALTH
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MONEY MATTERS
department at your workplace (where available) or see your manager to discuss
what is offered by the group insurance policy.
Private insurance
Private insurance, like group insurance, provides a number of benefits to eligible
members. Some policies cover wages lost because of illness, extra health-related
expenses, and financial settlements to your beneficiaries through life insurance
after you die.
To be eligible for private insurance, you will need to pay a regular premium,
Being HIV-positive
usually on a monthly basis, and you will usually have to undergo a medical
may mean you are
examination as a part of the condition for signing the policy or contract. Being
ineligible for a private
insurance contract.
HIV-positive may mean you are ineligible for a private insurance contract, as
many have rules about enrolling people with pre-existing conditions such as HIV.
Private insurance is big business, and even when you are admitted into a
program without a medical assessment, certain rules may override the insurance
company’s obligation to make any future payment. Always read the fine print,
and see a lawyer if you have any doubts or questions about a private insurance
Social assistance is
policy before you sign it.
available to anyone over
age 18, as long as you
meet your municipality’s
eligibility criteria.
Benefits include a basic
allowance, an allowance
for rent and a drug
eligibility card with
Municipal social assistance (welfare assistance)
Social assistance is available to anyone over age 18, as long as you meet your
municipality’s eligibility criteria. This generally means you must have legal status
in Canada, reside in the municipality where you are applying, and have no source
of income for the month in which you file your application. A fixed address is
usually not necessary to apply, although you will receive less money if you
cannot provide proof of monthly rental expense. This is an asset-tested program,
which means you will need to prove that your financial assets at the time of
application do not exceed the maximum set out in the program’s policies.
Benefits include a basic allowance, an allowance for rent, a drug eligibility
which you can pay for
card with which you can pay for most prescription drugs, a special diet supple-
most prescription drugs.
ment allowance for recipients with qualifying health conditions, and community
start-up and maintenance benefits to help you get settled in the community,
if necessary.
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Retirement benefits
The availability of anti-HIV drugs has meant that many people with HIV can look
forward to living into their retirement years. However, the complications of living
longer with HIV, along with the diseases associated with old age, make it finan-
20
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cially challenging for many seniors with HIV to meet their daily needs, especially
those who have not worked for a long time, have used up their life savings or
are transitioning from social assistance programs. Some of the financial security
pension plans available to most legal residents of Canada are discussed below.
Currently there are no retirement pensions or health benefits specific to seniors
with HIV.
Canada Pension Plan and Quebec Pension Plan
A Canada Pension Plan or Quebec Pension Plan retirement pension is a
monthly benefit paid to people who have contributed to the Canada Pension
Plan or Quebec Pension Plan. The pension is designed to replace about 25
per cent of the earnings on which your contributions were based. Eligibility
requirements for a retirement pension include having made at least one valid
contribution to the plan, that you are either at least 65 or if you are between
60 and 64 you meet the earning requirements of the program.
Your retirement pension does not start automatically. You must apply for
it unless you already receive a Canada Pension Plan or Quebec Pension Plan
disability benefit and have just turned 65. At that point, your disability benefit
automatically converts to a retirement pension. Your retirement pension is
based on how much and for how long you contributed to the Canada Pension
Plan or Quebec Pension Plan. The age at which you choose to retire also
affects the amount you receive. Canada Pension Plan or Quebec Pension
Plan pensions are taxable income, and monthly income tax deductions may
be made upon request. Along with your retirement pension, you may also be
qualified to receive the Old Age Security pension (see following page), a monthly
benefit available to most Canadians 65 years of age or older.
For more detailed information on the Canada Pension Plan and Quebec
Pension Plan, visit your local Service Canada office.
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Old Age Security pension
The Old Age Security pension is a monthly payment available to most Canadians
65 or older. You must apply to receive benefits. If you meet the eligibility requirements, you may be entitled to receive the Old Age Security pension even if you
are still working or have never worked. The Old Age Security pension, like most
other retirement pensions, is taxable income.
There is a maximum annual income requirement to be eligible for the
Old Age Security pension. Pensioners with a net income over the maximum
The Old Age Security
allowed must repay part (or all) of their Old Age Security pension amount.
The pension may be paid to people living outside of Canada if they lived in
pension is a monthly
Canada for at least 20 years after reaching the age of 18, were a legal resident
payment available to
or Canadian citizen when they left the country and they lived or worked in a
most Canadians
65 or older.
country that has a social security agreement with Canada. If you do not fall
within any of these qualifications, Old Age Security pension will only be paid
for the month that you left Canada and the six months following.
For more information about the Old Age Security pension and other
supplementary income for seniors, visit your local Service Canada office.
The Guaranteed Income Supplement
The Guaranteed Income Supplement provides additional money, on top of the
Old Age Security pension, to low-income seniors living in Canada. To be eligible
for the Guaranteed Income Supplement benefit, you must be receiving the Old
Age Security pension. The Guaranteed Income Supplement application must
The Guaranteed Income
be renewed every year, usually by filling out your income tax return by the April
Supplement provides
30 deadline. The Guaranteed Income Supplement stops being paid when your
additional money, on top
annual income upon retirement from sources other than the Old Age Security
pension (for example, from Canada Pension Plan or Quebec pension Plan
of the Old Age Security
retirement, private or foreign pensions or RRSPs) reaches a maximum amount.
pension, to low-income
You could also stop being paid the Guaranteed Income Supplement if you
seniors living in Canada.
leave Canada for more than six consecutive months or if you fail to file your
income tax within the stipulated deadline of April 30. While the Guaranteed
Income Supplement is a non-taxable income, you will still need to declare it in
your yearly income tax returns.
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For more information about the Guaranteed Income Supplement for lowincome seniors living in Canada, visit your local Service Canada office.
The Federal Extraordinary Assistance Program and
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the Multi-provincial and Territorial Assistance Plan
The Federal Extraordinary Assistance Program and the Multi-provincial and
Territorial Assistance Plan are tax-free monetary benefits compensating
Canadians who were infected by HIV through contaminated blood and blood
products. The payments were originally given to people infected with HIV
through blood products who signed to waive future court claims against the
There are several
federal and provincial governments.
federally funded
In December 1998, the federal, provincial and territorial governments
announced a financial assistance package for spouses, partners and children
of Extraordinary Assistance Program recipients who also became HIV-positive
because of their relationship with that person.
The assistance program for eligible secondary infected individuals is one
lump sum payment of $240,000. A signed waiver is required from recipients to
programs to help
refugees to Canada
establish themselves in
their new country.
protect the government from future court claims before payments are made.
Immigration Loans Program
The Immigration Loans Program is a federally funded program in which loans
are approved according to the applicant’s needs and ability to repay. Loans
are largely given to government-assisted or privately sponsored Convention
refugees in Canada, see Chapter 17, Immigrants, refugees and non-status
people with HIV. The loans may be approved to pay for the costs of medical
examinations abroad, travel documents and transportation to Canada.
Assistance loans are also available to newcomers to cover expenses such
as housing rental, telephone deposits and work tools. Interest is charged on
Immigration Loans Program loans. The interest rate is set each January by the
Department of Finance.
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The Resettlement Assistance Program
There are several federally funded programs to help refugees to Canada establish themselves in their new country. The Resettlement Assistance Program is
provided by the Government of Canada to people admitted to Canada as
government-assisted refugees. These funds are given to help pay for necessities
such as temporary shelter, help in finding permanent shelter and basic household items. The program also assists the refugee with income support for up
to one year or until the person becomes self-sufficient, whichever comes first.
Income tax credits
People with HIV may be eligible for a non-refundable tax credit (or tax break)
to reduce the amount of income tax they have to pay in a year. You will need
to apply for a Disability Tax Credit Certificate, have it completed by a qualified
The Canadian Health Act
ensures that all eligible
residents of Canada have
reasonable access to
health practitioner and submit the form with your income tax declaration. If your
disability is designated as permanent, you only have to submit this form once,
in the year you make your first claim.
If another person is supporting you (for example, a spouse or a family
member), any unused portion of your disability credit may be claimed by
that person.
insured health services
on a prepaid basis,
without direct charge.
These include doctor
and hospital services and
in-hospital drugs.
Deferring your property tax
If you are disabled and unable to pay for the property tax on your home, you
may be eligible to have these taxes deferred. Instead of you making the yearly
payments, these taxes can be paid through a government loan, which you
must repay if and when you sell your property, or which your beneficiaries must
pay after your death once your estate is settled
Covering medical expenses
Access to health services in Canada
The Canadian Health Act ensures that all eligible residents of Canada have
reasonable access to insured health services on a prepaid basis, without direct
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charge. These include doctor and hospital services and in-hospital drugs.
There is no coverage for services provided by psychologists, chiropodists,
acupuncturists, chiropractic doctors and many other alternative healing therapists,
optometrists or ambulance services.
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MONEY MATTERS
Apart from the medically necessary hospital and doctor services covered
by the Canadian Health Act, provinces and territories may provide services not
covered by the Act. For example, some provinces cover certain dental services
provided by certified oral surgeons. These services are provided at the discretion
of each province and territory. The one vital service provided by all of these provincial health plans is a drug plan (pharmacare) that guarantees access to necessary
drugs at no cost, or a very reasonable one, to eligible residents in Canada.
Non-Insured Health Benefits program
The Non-Insured Health Benefits Program is a national health program adminis-
The Non-Insured Health
Benefits Program is a
national health program
administered specifically
tered specifically for eligible members of the First Nations and Inuit. It is a
for eligible members
supplemental program designed to meet medical, vision and dental needs not
of the First Nations
covered by provincial or territorial insurance plans or private insurance companies.
To receive the benefits, an eligible recipient must be a resident of Canada and
and Inuit.
one of the following:
• a registered Indian according to the Indian Act;
• a member of the Innu communities of Davis Inlet and Sheshatshiu;
• an Inuk recognized by one of the Inuit Land Claim organizations;
• an infant less than one year of age, whose parent is an eligible recipient.
Benefits under this program include:
• prescription drugs and approved over-the-counter medications listed on
the Non-Insured Health Benefits Program Drug Benefit List;
• medical transportation when necessary;
• dental procedures;
• medical supplies and equipment;
• vision;
• crisis intervention counselling;
• provincial healthcare premiums, where applicable.
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MONEY MATTERS
The Non-Insured Health Benefits Program covers the lowest-cost drug alternative,
also known as the generic drug. Only if the patient has an adverse reaction to
the generic drug will the Non-Insured Health Benefits Program pay for a drug
with a higher cost.
The Non-Insured Health Benefits Program is a supplement to other plans
that you may have. In other words, if you are receiving any other disability or
social assistance health benefits, or have medical coverage under any other
plan, it is your responsibility to let the NIHB program know about it.
For the nearest Non-Insured Health Benefits Program office in your local
The Interim Federal
Health Program
provides temporary
area, visit the First Nations, Inuit and Aboriginal Health section of the Health
Canada Web site.
Interim Federal Health Program
medical coverage for
The Interim Federal Health Program is a program administered by Citizenship
refugee claimants during
and Immigration Canada. It provides temporary medical coverage for refugee
their settlement period
in Canada prior to
their qualification
for provincial
healthcare coverage.
claimants during their settlement period in Canada prior to their qualification for
provincial healthcare coverage. Interim federal health coverage is usually valid
for 12 months, although this period may vary.
The Interim Federal Health Program provides only essential and emergency
health services for the treatment and prevention of serious medical and dental
conditions. as well as contraception, prenatal and obstetrical care, essential
prescription drugs and costs related to the immigration medical examination.
Once provincial coverage starts, refugees are eligible only for supplemental
coverage under the Interim Federal Health Program, which covers emergency
dental, vision and medication costs. The Interim Federal Health Program is not
designed to replace provincial health plans and does not necessarily provide
the same coverage available to permanent residents.
For more information about assistance for refugee assistance programs,
visit the Citizen and Immigration Canada Web site.
Claiming medical expenses on income tax
Revenue Canada allows all taxpayers to claim medical expenses that are not
covered by any private or government subsidy programs. This may reduce
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the amount of income tax you must pay. You may include costs for services
provided by doctors, dentists or nurses, for health-related devices such as
hearing aids, wheelchairs and prescription eyeglasses, for prescription drugs
and also any premiums you paid to private health plans. If you have questions
20
MONEY MATTERS
regarding what medical expenses may be claimed in your tax declaration,
contact the Revenue Canada office nearest you.
Resources
HIV and Poverty in Canada
Information about assistance programs for people with HIV
• includes Directory of Income and Support Services across Canada
(www.hivandpoverty.ca/)
Service Canada
Information on benefits and pensions (www.servicecanada.gc.ca)
Federal, Provincial and Territorial Drug Access Programs
Information about drug benefit programs across Canada
Citizen and Immigration Canada
Information about refugee assistance programs (www.cic.gc.ca)
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
NOTES
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21
CONTENTS
Legal issues
This chapter is designed to answer some of your
questions about HIV and the law. It will provide you
with legal information related to HIV such as disclosure,
privacy and confidentiality and discrimination. It offers
more general information about lawyers, legal aid and
practical issues such as how to prepare a will.
About the author
Paul Higgins was called to the Ontario Bar in 1999 and
joined Jordan Battista LLP in March 2007. Paul has
• Legal information and
legal advice
• HIV transmission and the
criminal law
• Privacy and confidentiality
• How to fight
discrimination
• Forced-testing laws
• Lawyers and legal aid
• Planning ahead
extensive experience in the areas of criminal, family and
personal injury law and his areas of practice include Real Estate, Wills and
Estate Planning.
Paul has practiced law in Weyburn, Saskatchewan, and Edmonton,
Alberta. During his time at law school, Paul maintained a summer job as
the Fundraising Coordinator for AIDS New Brunswick.
MANAGING YOUR HEALTH
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LEGAL ISSUES
Legal information and legal advice
This chapter is designed to answer some of your questions about the law. It
will provide you with general legal information. It is not legal advice. It is not a
substitute for getting legal advice. The difference between legal information and
legal advice is important.
Legal information can help you understand the law and legal options,
but it is general. This chapter provides an overview of some of the general
principles of the law. The information may not apply to your specific situation.
The law can change at
any time. So speak with
a lawyer to make sure
you get up-to-date
legal information and
legal advice.
Your circumstances may be complex. And the law in your province or territory
may be different from the law in other provinces and territories, or the general
information in this chapter.
Legal advice is specifically about your situation and can help you to decide
what to do.
If you want legal advice you should talk to a lawyer licensed to practice law
in your province or territory. We have included at the end of this chapter a list of
organizations you can contact to ask for legal advice.
The law can change at any time. So speak with a lawyer to make sure you
get up-to-date legal information and legal advice.
A person has a legal duty
to disclose his or her
HIV-positive status to
sexual partners before
having sex that poses a
HIV transmission
and the criminal law
In Canada, the Criminal Code defines criminal offences. The Criminal Code
applies across the country. Courts interpret and apply the Criminal Code when
they decide legal cases of people charged with criminal offences.
“significant risk” of HIV
transmission. This
includes anal or vaginal
intercourse without
a condom.
292
HIV disclosure and sex
There have been two Supreme Court of Canada decisions about the legal duty
an HIV-positive person has under the Criminal Code to disclose his or her HIV
status to a sexual partner. According to these cases:
• A person has a legal duty to disclose his or her HIV-positive status to
sexual partners before having sex that poses a “significant risk” of HIV
WWW.CATIE.CA • 1.800.263.1638
Managing
your health
CHAPTER
UPDATE 2013
HIV disclosure and sex
According to two Supreme Court of Canada decisions
in 2012, an HIV-positive person has a legal duty to
disclose his or her HIV status to a sexual partner before
having any sex that poses a “realistic possibility” of HIV
transmission. What does this mean?
• A person living with HIV does not have to
disclose his or her HIV status before having
vaginal sex if a condom is used and the HIV-
21
positive person has a “low” HIV viral load at the
time of sex. In one of the 2012 decisions, the
Supreme Court of Canada found that an HIV
viral load of 1,500 copies or less of the virus per
This insert, produced in early 2013, updates Chapter
millilitre of blood counted as “low”—this includes
21, Legal issues to reflect current Canadian law. The
anyone with an undetectable viral load. Whether
following text replaces the section HIV transmission and
1,500 will be the standard for defining “low” is
the criminal law, pages 292 to 294.
not yet clear, so make sure you have the most
current information.
• A person with HIV does have a legal duty to
HIV transmission and
the criminal law
disclose his or her HIV status before having:
• vaginal, frontal1 or anal sex without a
condom, regardless of viral load; or
In Canada, the Criminal Code sets out criminal
• vaginal, frontal or anal sex when viral load is
offences. The Criminal Code applies across the country,
higher than “low,” even when a condom
in every province and territory. People with HIV have
is used.
been charged and convicted of a number of crimes—
including aggravated assault, aggravated sexual assault
Note that these legal definitions are different from the
and attempted murder—for not disclosing their HIV
language used to talk about the risk of transmission
status to a sexual partner before having sex. What’s
with different kinds of sex. Sex acts that carry a “realistic
more, an HIV-positive person can be charged and
possibility” of transmission from a legal perspective may
convicted of a crime even if the other person does not
have a low risk of transmission.
become infected with HIV.
The law about HIV, sex and disclosure is complex
important questions about HIV disclosure and sex:
and we cannot provide answers to all of the questions
• We cannot say for certain that a person who
you may have. Also, the law can change at any time.
Speak with a lawyer familiar with HIV-related issues to
make sure you get up-to-date legal information and
advice about your particular circumstances.
The Court’s decisions left unanswered some
uses a condom and has a “low” viral load does
not have a legal duty to disclose his or her HIV
status before anal sex or frontal sex because
the Supreme Court did not specifically address
these issues.
• It is not clear how the law applies to the different
kinds of oral sex (with or without a condom or
other latex barrier).
1. Frontal sex is what is commonly referred to as vaginal sex. This term is sometimes used by trans men or people on the trans masculine
spectrum who feel more comfortable with this language.
condom breaks during sex. The law is not clear
Pregnancy, HIV exposure and
criminal law
on this issue. Disclosure might increase the risk
Criminal charges cannot be laid against someone
that the sex partner will lodge a complaint with
who is pregnant for failing to take steps to prevent
the police. At the same time, a person may
the transmission of HIV during pregnancy or labour
also want to consider factors beyond the law
(for example, refusing to take anti-HIV drugs during
in deciding whether to disclose in this situation.
pregnancy). However, following the birth, a parent
Disclosure might help to reduce the partner’s
who risks transmitting HIV to an infant by not
risk of HIV infection. With disclosure, the partner
telling the healthcare provider of their HIV status,
has information that may help him or her decide
refusing medications for the child or breastfeeding/
whether to seek PEP (post-exposure prophylaxis)
chestfeeding2 could face criminal charges or child
with anti-HIV drugs. However, disclosure might
protection proceedings.
• A person may have a duty to disclose when a
also cause the sex partner to react badly.
her HIV-positive status before having sex with a
HIV disclosure and sharing
drug use equipment
person he or she knew was already HIV positive.
As far as we know, no Canadian court has yet decided
However, we don’t know of any cases where an
whether an HIV-positive person who uses recreational
HIV-positive person has been charged for not
or street drugs has a legal duty to disclose his or her
disclosing to another person living with HIV.
HIV status to someone with whom he or she is sharing
• A person may have a legal duty to disclose his or
• A person who knows that he or she likely has
drug-use equipment (for example syringes, needles,
HIV (but has not received an HIV-positive test
crack pipes, etc.). Sharing certain drug-use equipment
result) may have a legal duty to tell sexual partners
(such as needles and syringes for injecting) is a high-
about this risk before having sex that poses a
risk activity for transmitting HIV. Therefore, it is safest
realistic possibility of transmission. We don’t know
to assume that police and courts would consider that
of any cases where a person without an HIV-
sharing equipment poses a realistic possibility of HIV
positive diagnosis was convicted of not disclosing
transmission, meaning a person would have a legal duty
the potential risk of HIV infection to his or her
to disclose his or her HIV-positive status before sharing.
sex partner.
2. Chestfeeding refers to nursing an infant using one’s chest. It is a term sometimes used by people on the trans masculine spectrum
who feel more comfortable with this language.
An insert of CATIE’s Managing your health: a guide for people living with HIV, available at www.catie.ca or 1.800.263.1638.
transmission. This includes anal or vaginal intercourse without a condom.
Your duty to disclose your HIV status when having sex other than intercourse
is not clear.
• A person can be convicted of a crime for not disclosing his or her HIV-
21
LEGAL ISSUES
positive status before having sex that poses a significant risk of transmission, even if the other person does not actually become infected. In other
words, it is a criminal offence to expose someone through sex to a
significant risk of getting HIV.
• A person may have a legal duty to disclose his or her HIV-positive status
before having sex that poses a significant risk of transmission even if he
The law is unclear about
or she knows that the sexual partner also has HIV.
whether a person living
• A person who knows there is a real possibility that he or she has HIV
(but has not received an actual HIV-positive test result) may have a legal
duty to tell sexual partners about this risk before having unprotected sex.
There is only a duty to disclose when there is a significant risk of transmitting
HIV. The law is clear that vaginal and anal sex without a condom currently pose
a significant risk. However, the law is unclear about whether a person living with
with HIV has a duty to
disclose his or her status
when engaging in other
sexual acts with a lower
HIV has a duty to disclose his or her status when engaging in other sexual acts
risk of HIV transmission
(like vaginal or anal sex with a condom, or oral sex without a condom or other
than unprotected anal or
barrier) that have a lower risk of HIV transmission than unprotected anal or
vaginal sex. It could be argued that the risk of transmission is low enough in
vaginal sex.
the case of other activities that it should not be considered a significant risk,
and therefore the person has no legal duty to disclose. But courts in Canada
have not yet confirmed this.
Women and HIV disclosure
The criminal law may affect women living with HIV differently than men. Up to
the end of 2008, fewer than 10 women had been criminally charged in Canada
for having sex without disclosing their HIV status to their male partners. The
criminal law has also been applied to mothers living with HIV. Criminal charges
cannot be laid against a woman for failing to take steps to prevent the transmission of HIV during pregnancy or labour (for example, refusing to take anti-HIV
drugs during the pregnancy ). However, a pregnant woman with HIV who does
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not tell her healthcare provider that she is HIV-positive, or a mother who risks
transmitting HIV to her child through breastfeeding, could face criminal charges.
HIV disclosure and sharing drug use equipment
No Canadian court has yet decided whether an HIV-positive person who uses
recreational or street drugs has a legal duty to disclose his or her HIV status to
someone with whom he or she is sharing drugs and equipment to use drugs
(for example needles, crack pipes, etc.). Sharing certain drug use equipment
(such as needles and syringes for injecting) is a high-risk activity for transmitting
HIV. Therefore, it is safest to assume that this would be considered a significant
risk of transmission under the law, meaning a person would have a legal duty
to disclose his or her HIV-positive status.
The duty of confidentiality
is placed on healthcare
professionals to keep
your personal health
information confidential,
except in exceptional
circumstances and under
specific conditions.
Privacy and confidentiality
The right to privacy is a fundamental right recognized under Canadian law.
With rare exceptions, people with HIV have a right to:
• decide when, how, to what extent and to whom they will disclose
their personal information;
• control the use and disclosure of their personal health information,
and who has access to that information;
• know how their personal information is going to be used
and safeguarded.
Federal, provincial and territorial governments are required to respect your right
to privacy by not interfering with it. Those governments are also required to
take steps to ensure that other people and organizations do not breach your
right to privacy.
The duty of confidentiality is placed on healthcare professionals to keep
your personal health information confidential, except in exceptional circumstances
and under specific conditions. Healthcare professionals include doctors, nurses,
psychologists, dentists and other people that work in health care.
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Some limits on the right to privacy
It is important to realize that the rights to privacy and confidentiality are not
absolute. Competing social or community values and interests may trump your
right to privacy and the duty of confidentiality owed to you. Here are some of
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the situations where that may be the case.
Public health law Under provincial and territorial laws, public health authorities
and certain healthcare professionals like doctors and nurses are given legal
powers to prevent the spread of infectious diseases. For example, when someone tests positive for HIV, another sexually transmitted disease or a disease
like tuberculosis, the doctor must report the person to provincial public health
authorities. Another example is partner notification (also known as contact
tracing) that happens when someone tests positive for a sexually transmitted
infection. Public health authorities have the power to contact a person’s past
sexual partners to tell them to seek medical advice. But public health authorities
should not use the name of the infected person.
To prevent harm to someone Courts have decided that in specific, narrowly
defined circumstances, the duty of confidentiality owed to you can be broken
to protect someone from being harmed by you. Here are the circumstances:
• there is a clear risk of harm to a known person or group of persons;
• the person or group will suffer serious injury or death;
• the harm is about to happen.
Legal investigations and court proceedings Police investigating a possible
crime, and courts hearing legal cases, can force your personal health information
to be disclosed without your consent. (But the police and courts cannot force
you to answer questions or to testify in a criminal case against you, since people
have a legal right against self-incrimination.) Laws also give administrative investigators, decision makers and tribunals the power to force the disclosure of
information, including personal health information.
Exceptions written into laws that protect the privacy of personal
information These laws include sections that allow government officials and
staff in institutions like hospitals to disclose your health information without your
consent. This could mean contacting a relative or friend if you are injured or ill,
contacting the police as part of the investigation of an offence, or disclosing your
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health information to find out if you are eligible for health or health-related benefits.
Forced-testing laws For more information, see the section on Forced-testing
Laws, on page 299.
LEGAL ISSUES
What you can do if your privacy is breached
If your right to privacy has been violated or your confidential personal health
information has been disclosed without your consent, you may be able to file a
complaint with a government agency responsible for hearing privacy complaints.
This type of agency is often called a privacy commissioner, or information and
If your right to privacy
has been violated or
your confidential
personal health
information has been
disclosed without your
privacy commissioner.
You can also file a lawsuit in civil court against an organization or person
who breached your privacy. This area of law is still developing. In some
provinces, people have had some success bringing these breach of privacy
cases to court. However, even in successful cases, the courts have tended to
give people only small amounts of money to compensate them.
If a healthcare professional has breached your confidentiality, you can
file a complaint with the organization that licenses and regulates that type of
consent, you may be able
professional. Healthcare professionals are licensed and regulated in the
to file a complaint with a
province or territory where they work. For example, if you are in Regina and
government agency
responsible for hearing
privacy complaints.
want to file a complaint against a dentist, you would contact the College of
Dental Surgeons of Saskatchewan.
If you live in Quebec, your privacy is also protected in the Quebec Charter
of Human Rights and Freedoms. That means that the Commission des droits
de la personne et des droits de la jeunesse has the power to investigate a
breach of your privacy and to work toward the settlement of your complaint.
How to fight discrimination
Discrimination can take many forms (spoken or written words, behaviours,
official or unofficial policies and laws). The motive or intent is irrelevant in the
eyes of the law—it can be discrimination even if the person does not mean
to discriminate against you. Discrimination is unjust and takes away people’s
dignity. Laws have been put in place to try and prevent people from being
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treated unfairly. These laws also give people a process to fight for their rights
when they have been treated unfairly and illegally.
As a person living with HIV, you may experience discrimination because
of your HIV. HIV and AIDS are both considered a disability under the law in
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Canada, so people living with HIV are protected by these laws because they
have HIV. Or you may face discrimination because you are gay or are assumed
to be gay, because you are a person of colour, or because you have an addiction
to drugs. Or you may face discrimination based on one or more of the other
“protected grounds” of discrimination: ancestry, place of origin, ethnic origin,
colour, citizenship, religion, creed, sex, sexual orientation, age, marital status,
HIV and AIDS are both
family status, disability, receipt of public assistance and conviction for which a
considered a “disability”
pardon has been granted.
under the law in Canada,
Human rights laws and complaints
The Canadian Human Rights Act and the provincial and territorial human rights
laws have been put in place to protect people from discrimination on the
protected grounds listed above. These laws also protect people when they are
treated unfairly because another person wrongly believes they have HIV or the
so people living with HIV
are protected by these
laws because they
have HIV.
other person associates them with people living with HIV.
The Canadian Human Rights Act protects people against discrimination in:
• employment by the federal government or a federally controlled industry
(including the military);
• services offered by the federal government or federally controlled industry
(for example, Employment Insurance, Canada Pension Plan, banks,
airlines, railways, telecommunications, and the federal civil service);
• housing provided by the federal government.
The Canadian Human Rights Commission accepts complaints from people
who say they have faced discrimination in any of these federal areas.
If your complaint is not about one of these federal areas, you can file your
complaint with your provincial or territorial human rights commission. (If you
live in British Columbia or Ontario, then you should file your complaint directly
with the human rights tribunal in that province.) The human rights law of your
province or territory forbids certain forms of discrimination by private businesses
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and private employers, provincial and municipal governments, and many other
organizations (like unions, schools, colleges and universities, and voluntary
organizations and clubs). Most cases of discrimination fall under provincial and
territorial laws.
If you want to file a complaint, it is important not to let too much time pass.
The time limit for filing a complaint varies among the different provinces and
territories. For example, the Canadian Human Rights Commission can decide
not to deal with your complaint if it is filed more than a year after the alleged
discrimination occurred. Under Saskatchewan law, the time limit to file a complaint is two years, while in Manitoba it is only six months. Some commissions
have the power to extend the time limit in exceptional circumstances.
It is illegal for anyone to try to get even with someone who files a complaint,
gives evidence in a complaint or otherwise helps someone with a complaint.
More information about fighting
discrimination at work
In addition to human rights laws, there are other ways of fighting discrimination
at work. The federal government has a written policy on HIV in the workplace,
which covers all federal employees, including people in the armed services and
RCMP. Provinces, municipalities, unions, professional organizations and private
companies may have similar policies. Often workplace policies give people a
right to make a complaint, which will be handled inside the organization. If you
try to resolve discrimination through such an internal complaint process, do not
forget about the time limits for filing a human rights complaint. If your internal
complaint is not successful or not taken seriously, you don’t want to miss out
on your chance to file a complaint with a human rights commission or tribunal.
You can also launch a lawsuit in court. But a lawsuit probably won’t get
you your job back and is usually a long and expensive process. And while you
can represent yourself in a lawsuit, the law is complex and the legal system is
difficult to figure out. So you will probably want to seriously consider hiring a
lawyer to represent you.
If you work in a unionized workplace, your collective agreement (in other
words, the contract in your workplace) probably protects you from discrimina-
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tion. Unionized workplaces have special ways of settling workplace disputes
and complaints. If you have faced discrimination in a unionized workplace,
you can probably file a grievance. Speak with your union representative to get
more information about your collective agreement, discrimination and filing
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a grievance.
Forced-testing laws
Several Canadian provinces have passed laws that allow a person to be tested
for HIV (and certain other blood-borne infections) against his or her will and the
test results disclosed to someone else. These laws can be used by people—
like police officers, prison guards, firefighters and paramedics—who work in
jobs where they may be exposed to another person’s blood or other body fluids. People who help out in an accident—sometimes called good Samaritans—
can also use these laws.
Here is a simplified example of how these laws work. If a person’s blood or
other body fluid gets on a police officer during an arrest, the police officer can
ask the person to get tested for infections (or to tell the police officer the results
of tests he or she has had). If the person refuses to get tested (or refuses to
disclose his or her health information), the police officer can apply to a public
health official or judge to have the person’s blood drawn and tested for certain
blood-borne infections. The police officer will be told the results of the tests.
A person can fight an order to have his or her blood tested, but will probably
need a lawyer to help fight the order.
At the end 2008, Ontario, Alberta, Nova Scotia and Saskatchewan had
these types of forced-testing laws. Manitoba passed a law in 2008, but it was
not yet in force at the end of 2008. There is the strong likelihood of such laws
being passed in other provinces and territories.
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Lawyers and legal aid
Your lawyer acts as your adviser and advocate. The role of a lawyer is to advise
you of your legal rights, tell you what the law says, and help you understand
how legal systems and procedures work. A lawyer can also represent you in
bringing a complaint, a lawsuit, when you have been charged with a criminal
offence, in negotiations, in court, or in front of other decision-making groups.
If you hire a lawyer, he or she can only take instructions from you or someone
else you designate for that purpose.
The role of a lawyer is
to advise you of your
There are many reasons why you might want to see a lawyer. Maybe you
or a spouse/partner needs legal assistance in immigrating to Canada. You may
have been charged with a criminal or provincial offence and require representation.
legal rights, tell you
Perhaps you have experienced discrimination in your workplace, at school or
what the law says,
from a public or private institution. Perhaps you are having difficulty in dealing
and help you understand
with an employer, a landlord or with an insurance company. You may also be
how legal systems
and procedures work.
experiencing issues relating to marriage, family and child custody and access.
You may also wish to see a lawyer to get help in completing a will, a power of
attorney or a living will or to receive advice in estate planning.
Lawyers’ fees and legal costs
Lawyers often charge clients on an hourly basis and can be expensive. Some
lawyers charge a lower hourly fee for people who do not have a lot of money.
In this case, the fee is based on how much money you make or how much
money you have. This is called a sliding scale. Some types of legal work are
charged on a flat-rate basis. A lawyer may take your case pro bono, where
you do not have to pay the lawyer’s fees, but you may still have to pay for other
costs in your case. But this does not happen often. Some provincial and
territorial law societies have set up organizations to encourage and promote
lawyers taking on more pro bono work. They act as a conduit between the
lawyer and prospective pro bono clients.
Legal aid
Each province and territory offers a program of free (or subsidized) legal services
to people who can’t afford lawyers. Usually this legal service is called legal aid.
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Legal aid services are often provided by lawyers who work alone or in law
firms. In some provinces, legal aid services are also provided by legal aid offices
or clinics. The government runs some legal clinics or offices, others are run like
community organizations, and law schools often have legal clinics. Legal aid
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clinics and offices are staffed by lawyers and people like paralegals and law
students who assist the lawyers.
Whether you are eligible for legal aid will depend upon your case and your
financial situation. Depending on how much money or other financial resources
you have, you may be asked to pay for some of the costs of your case. To find
out what types of cases are covered in your province or territory, you should
Each province and
contact a legal aid office. To find a legal aid lawyer or legal aid clinic in your
territory offers a
area, contact the provincial or territorial law society, the local legal aid office,
program of free
a law school or even your healthcare professional. See the last section in this
chapter to find out how to contact these organizations.
(or subsidized) legal
services to people who
Questions to ask your lawyer
These are some questions to ask a lawyer before you hire him or her so you
can’t afford lawyers.
Usually this legal service
know where you stand.
• How much money do you charge per hour?
is called legal aid.
• Do you offer a sliding scale for fees?
• Can you estimate how much time my case will need?
• Can you charge me for my case on a flat-rate basis and if so how much
will it cost?
• Do you take pro bono cases? If so, what things will I have to pay for and
how much will they cost?
• Do you accept legal aid certificates?
• Do you work with licensed paralegals, student lawyers, articling students
or junior lawyers? (They can work on your case at a cheaper rate and
keep your total costs down.)
• Are there any expenses I will have to pay for up front (such as faxes,
letters, court filing fees, etc.)?
• Do you have experience in my type of case?
• What are the strong and weak points of my case?
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• If I win my case, will the court award me money to cover some or all of
the costs of the case?
• If I lose my case, will the court make me pay for the cost of the other
side’s case?
Planning ahead
An HIV diagnosis is not the death sentence it used to be. With the advances
Planning in advance for
illness and death can help
you keep control over
your healthcare, your
money and your life, and
help ensure that the
people you leave behind
are better taken care of.
that have been made in HIV treatment and care, people can live with HIV for
years in good health. Many experts even predict that, with proper treatment
and care, newly diagnosed people with HIV can live out something close to a
full, natural lifespan.
However, death is one of the few certainties in life, and one that all of us
will eventually face. Planning in advance for illness and death can help you
keep control over your healthcare, your money and your life, and help ensure
that the people you leave behind are better taken care of.
Powers of attorney for personal care
and living wills
A medical power of attorney (sometimes called a power of attorney for medical/
personal care) or a living will (also known as an advance directive or medical
directive) is a document containing your wishes about your future healthcare
and/or personal care. Your instructions can be specific or general. All provinces
have passed laws that support medical powers of attorney and living wills.
In addition to your wishes about your medical care, your medical power of
attorney/living will should also contain the name of the person you designate to
ensure your wishes are followed. This person is called a substitute decision
maker (sometimes referred to as a proxy). If you find that making decisions for
a possible future illness is too difficult, then you may only want to name your
substitute decision maker. If you have not named a substitute decision maker in
a medical power of attorney or a living will, the doctor will usually seek consent
from your next of kin—that is, your closest relative—a parent, a legal (possibly
common-law) spouse, a grown child or a sibling.
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Powers of attorney for property
A power of attorney for property is a document you sign that gives a person
of your choice (your “attorney”) the power to look after your financial affairs.
Appointing an attorney means that there is someone who can look after your
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financial affairs if you are not able to do so. This power can be time limited, or
it can continue indefinitely (this is called an “enduring” or “continuing” power of
attorney). A power of attorney allows your attorney to manage your financial
affairs on your behalf if you are unable to do so. This could include paying bills,
managing bank accounts, paying or collecting rent, and buying or selling property.
In order for your power of attorney to be legal, it has to be written in a
specific way. A lawyer or notary can help you prepare this document. Or, if you
wish, you can buy a form from a stationery store or download a form from the
Internet and write up the power of attorney yourself.
As long as you are mentally competent, you can cancel the power of
attorney at any time. If it has never been used, you can simply destroy it.
Otherwise, an enduring power of attorney/continuing power of attorney for
property will come to an end if you cancel it, or in other circumstances like
bankruptcy, death, or where a court appoints someone to manage your affairs.
Wills
A will is a document that says what you want done with your assets (personal
property and money owed to you) when you die. You can also include directions
for your funeral or burial in your will. If you are a parent, you can name a legal
guardian for your minor children and decide whether or not that person or
persons will have access to your children’s inheritance. You can also set up a
trust fund for your children, so that they have money to take care of things like
their education. Finally, you can name an executor—the person who will be
legally responsible for carrying out the instructions in your will.
You can write your own will, or you can hire a lawyer or notary to write it
for you.
If you decide to write your own will, you can fill in a standard will form.
(You can find these at many office supply stores.) You can also make what is
called a holograph will, which must be entirely in your own handwriting.
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(It can’t have any mechanical printing or typing anywhere on it.) You will state
that this is your “last will and testament.” You must distribute all of your assets.
The will must have a date on it and end with your signature. Holograph wills
are not recognized as legal wills in every province or territory.
If you die without a valid will you are said to have died intestate. If this
happens, everything that you own will be distributed amongst your nearest
relatives, according to a government system written in provincial and territorial
laws. If no relatives are known or found, your assets will go to the government.
It is illegal in Canada for
anyone, including a
doctor, to counsel you
Suicide and assisted suicide
Suicide means purposely ending your life. Assisted suicide is suicide committed
with help from another person or group of people. It is illegal in Canada for
anyone, including a doctor, to counsel you to commit suicide or assist you with
to commit suicide or
committing suicide. However, it is not illegal for you to do it yourself. Furthermore,
assist you with
in Canada, a mentally competent patient has the legal right to refuse treatment
committing suicide.
and a valid refusal obligates a doctor to forgo treatment, even if honouring the
However, it is not illegal
for you to do it yourself.
refusal will result in death.
Suicide can affect your life insurance policy. Depending on the policy and
how long you have had it, if you commit suicide, the benefit may be decreased
or not be paid out at all.
Resources
The Canadian HIV/AIDS Legal Network
Comprehensive legal and human rights information related to HIV
(www.aidslaw.ca)
HIV disclosure: a legal guide for gay men
Booklet on HIV and the law for people living with HIV
HIV & AIDS Legal Clinic (Ontario)
Information and Advice about HIV and the Law in Ontario (www.halco.org)
Criminal Law and HIV: Info sheet series
Series of five information sheets from the Canadian HIV/AIDS
Legal Network (www.aidslaw.ca)
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Websites for further information on legal issues
• Legal aid in Ontario
(www.legalaid.on.ca)
• Legal aid in other Provinces and Territories
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(www.legalaid.on.ca/en/links/other.asp)
• Law Societies and Lawyer Referral Services
(www.flsc.ca/en/lawSocieties/websites.asp)
• Canadian Human Rights Commission
(www.chrc-ccdp.ca)
• Provincial and Territorial Human Rights Agencies
(www.chrc-ccdp.ca/links/default-en.asp)
• Office of the Privacy Commissioner of Canada
(www.privcom.gc.ca)
• Provincial and Territorial Privacy Commissioners
(www.privcom.gc.ca/resource/prov/index_e.asp)
Most of these and many other relevant resources can be accessed on CATIE’s
website (www.catie.ca), through the CATIE Ordering Centre (www.orders.catie.ca)
or by calling CATIE at 1-800-263-1638.
NOTES
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Housing
Your housing is one of the keys to managing your health.
It is as important as income, food and your treatment
plan. Research studies like the community-based
Positive Spaces, Healthy Places have shown that the
type of housing you live in, the amount of money you
spend each month for your housing, and how often you
have to move directly affect your health when you are
living with HIV.
About the author
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CONTENTS
• Types of housing
• Housing that meets
your needs
• How to access housing
• How to keep your housing
Ruthann Tucker, a principal with Tucker and Associates,
has worked in the HIV field for more than 18 years,
including appointments as an expert advisor, communitybased research initiatives with the Ontario HIV Treatment
Network (OHTN) and executive director at Fife House, Canada’s largest
provider of supportive housing for people living with HIV. She has worked
at AIDS Vancouver Island, was a founding member of the Pacific AIDS
Network and a consultant for Vancouver Coastal Health. Ruthann has also
held appointments to the Ontario Advisory Committee on HIV/AIDS, which
provides strategic advice to the Ontario Minister of Health.
Ruthann is a principle investigator for the study Positive Spaces,
Healthy Places—a prospective study to explore the impact of housing
support and homelessness on health outcomes of people with HIV. The
study is funded by the OHTN and Canadian Institutes of Health Research.
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HOUSING
Types of housing
Secure, stable housing provides a foundation for health and helps reduce the
impact of HIV stigma and discrimination. People who have a stable place to live
and the supports they need, feel better physically and mentally, and are more
likely to follow their treatment plan. Having a safe home has even been shown
to help prevent HIV transmission.
In Canada, apart from home, condominium or apartment ownership, there
are several different types of housing, including:
People who have a
stable place to live and
the supports they need
feel better physically and
mentally, and they are
• private-market rental housing, which means renting a house, apartment
or room from a landlord. The person or company that owns the apartment
building or rental house determines the amount of rent charged. The
landlord/owner is usually trying to make a profit from renting out the
property, and will charge market rates;
• non-profit rental housing, which includes private non-profit and public
non-profit (mainly operated by an independent organization funded by
more likely to follow
government). Non-profit housing operators usually charge just enough
their treatment plan.
rent to cover the cost of running the building plus a bit extra in case the
roof needs to be fixed or the building needs to be painted. Non-profit
co-operatives, better known as co-ops, charge affordable but still marketrate rents. Co-operatives are regulated by the federal government and
their own by-laws;
• social or subsidized housing is often funded by provincial or municipal
governments and operated by an independent organization. Most social
housing is “rent geared to income”: the amount of rent you pay is based
on your income. Social housing is set aside for people who cannot afford
to live in private-market or even non-profit housing. The social housing
subsidy that the government provides may be linked to a particular unit
in a specific building, which means a person has to live in that unit to
receive the social housing subsidy; or, it may be connected to the person
so he or she can take advantage of it wherever he or she lives (a portable
subsidy). In some cases, co-operatives set aside a certain number of
units for people living with HIV; in others, there are buildings dedicated
for people with HIV, such as Fife House in Toronto, McLaren Housing in
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Vancouver or the Tommy Sexton Centre in St. John’s. Some communities
have housing for people from specific populations, such as the housing
programs for Aboriginal people in Vancouver;
• supportive housing or assisted living is housing plus support services
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provided by staff, such as helping people bathe, making their meals or
helping with banking and grocery shopping. Supportive housing is usually
available to people who have either a physical or mental disability and
need support services as well as housing to live as independently as
possible. Some communities have supportive housing specifically designated for people living with HIV;
• shelters or transitional housing provide temporary housing. Because
there is such a shortage of affordable housing, many people with and
without HIV live in a shelter at some point in their lives. Transitional housing
is temporary: people stay for a fixed length of time until they find more
permanent or stable housing.
The type of housing that
you want and can find
will depend on many
Housing that meets your needs
The type of housing that you want and can find will depend on many factors,
including cost, location, availability (some communities do not have social or
supportive housing), your health needs and your preferences.
As you live with HIV over time and your needs change, you may need
different types of housing. For example, HIV can make you unwell for periods
of time. If you own your home or are paying market-rate rents, will you be able
to afford the rent or mortgage if you are not able to work? Do you have the
resources to see you through those periods? Think about more than the roof
factors, including cost,
location, availability
(some communities
do not have social or
supportive housing),
your health needs and
your preferences.
over your head. Look around your home or apartment. Will you be able to
manage stairs? How wide are the hallways? Would a scooter fit through if you
needed one in the future? It is important to take the time to think about how
you can make your housing as secure and safe as possible, and get access to
the supports you need.
Not every type of housing is for every person. Some people like to live in
shared housing with roommates, while others want to have their own space.
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Some need supportive housing all the time and some only need support some
of the time.
Some types of housing may have a negative impact on your health. For
example, in a shelter you may be more likely to be exposed to tuberculosis.
It is important to think about the type of housing that best meets your needs.
How to access housing
Housing is one of the
most urgent unmet needs
Housing is one of the most urgent unmet needs facing people living with HIV in
Canada. If you are living with HIV, you are probably living on a very tight budget.
Most people with HIV live on a fixed income. This means you only have a certain
facing people living with
amount to pay for your housing costs every month. If you are on a fixed income,
HIV in Canada.
it is important to assess your housing needs to ensure you have the best place
you can afford, with the necessary supports in place to maintain your health.
Just as there are many types of housing, there are many ways to find or
access housing. Looking for a place to live is like having a full-time job. It is
work—hard work. You may get discouraged. Please remember that you are
not alone and there are people who can help you find out about the housing in
your area.
Some communities have housing help centres where a housing worker will
Some communities have
help you through the maze of finding a place to live that is right or—in most
housing help centres
cases—okay for you. The staff who work in these centres will know the rules
where a housing worker
and regulations about social or subsidized housing and supportive housing in
will help you through
the maze of finding a
place to live.
your community; the rules change from province to province and municipality
to municipality. Staff may be able to tell you if you qualify for subsidized housing
based on your household income, and they will help you fill out the forms.
It’s important for you to know that if you live with someone else, that person’s
income is counted as well as yours to determine if you qualify for social or
subsidized housing.
Some places have centralized waiting lists for subsidized housing; other
places do not. There is usually a very, very long waiting list. But there may be
a rule or regulation that gives people with HIV priority for subsidized housing.
To get onto a waiting list or get priority for subsidized or supportive housing,
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people with HIV usually have to go through a process of having their health
assessed. Your doctor may have to fill out a form—sometimes called a “medical
priority”—and disclose information about your health. This may speed up the
time you have to wait to find a place you can afford. You have to give your
22
HOUSING
consent before your doctor can share any of your health information.
Remember: if you are thinking about moving from one part of Canada to
another or from one place to another, find out about the housing situation first.
The availability, cost and quality of housing for people with HIV may vary greatly
from one part of Canada to another.
Some AIDS service organizations have staff, volunteers or peers—other
Some AIDS service
people living with HIV—who are specifically trained to help you find a place to live.
organizations have staff,
volunteers or peers—
How to keep your housing
other people living with
Housing providers, landlords and shelters work within a set of rules that they
HIV—who are specifically
have to follow, like turning the heat on by a certain time of the year and making
trained to help you find a
repairs to rental units. People living in rental, social or supportive housing and
place to live.
in shelters are also expected to follow rules, such as paying the rent on time.
To keep your housing, you have to follow the rules. But you also have
rights; landlords cannot evict you without cause. If you are about to lose your
housing, it is important to know that there are services that can help.
• Housing workers can help you negotiate with your landlord and may
even be able to help you keep your place.
• Legal services, such as legal aid clinics, can also help. Some are specifically designed to assist people living with HIV and some serve anyone
who cannot afford a lawyer.
If your housing is at risk, do not wait until the last minute to get help. The sooner
you seek assistance with your housing situation, the better the outcome will
probably be.
It is also important to remember that you are part of the solution in finding
and keeping a place to live.
The place you call home is more than an apartment or a room or a house.
How you feel about where you live is very important in maintaining your overall
MANAGING YOUR HEALTH
313
22
HOUSING
health. In fact, if you are living with HIV, your housing is one of the foundations
for health. If you have stable housing, you will be healthier, less stressed and
enjoy a better quality of life. For more information on the types of housing and
supports available and on how to find and keep affordable housing, contact
your local AIDS organization, talk to other people living with HIV or look for
resources on the Internet.
Resources
Positive spaces healthy places
A community-based research initiative to examine housing and health in
the context of HIV (www.positivespaceshealthyplaces.ca)
The place you call
home is more than an
apartment or a room or
Other relevant resources can be accessed on CATIE’s website (www.catie.ca),
through the CATIE Ordering Centre (www.orders.catie.ca) or by calling CATIE
at 1-800-263-1638.
a house. How you feel
about where you live
is very important in
NOTES
maintaining your
overall health.
314
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22
NOTES
HOUSING
MANAGING YOUR HEALTH
315
22
NOTES
HOUSING
316
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Personal health record
(Photocopy this page and give to a friend in case of emergency)
Name
Date of birth
Home address
Email address
Phone number
Employer phone number
Health card number
Private health insurance information:
Age
Weight
Height
Date of HIV diagnosis
Blood type
Allergies and drug sensitivities
Other medical conditions:
Family history (for example, has a family member ever had diabetes, heart disease, cancer, etc?)
Condition
Family member (relation)
Condition
Family member (relation)
Healthcare providers
Specialty
Name
Contact information
Relationship
Phone
Family doctor
HIV specialist
Pharmacy
In case of emergency, contact
Name
MANAGING YOUR HEALTH
317
History of anti-HIV drugs (Keep this list current)
Anti-HIV drug
Dosing schedule
Special instructions
Date started
Date stopped
Reason for stopping
Date stopped
Reason for stopping
History of other drugs and/or therapies (Keep this list current)
Name of drug
or therapy
Dose
(if applicable)
Special instructions
Date started
History of significant medical events (such as hospitalization, serious illness, surgery) (Keep this list current)
Date
318
Description of event
Notes
WWW.CATIE.CA • 1.800.263.1638
Monitoring tests (Fill in this chart with the results of each viral load test, CD4+ test and any other tests you want to
monitor, such as cholesterol or triglyceride levels)
Date of test
Viral load
CD4+ cell count
Symptoms and side effects record
Describe symptom/side
effect
When did it occur and how
long did it last?
How was it treated?
Notes
MANAGING YOUR HEALTH
319
Notes for visit to doctor
(Photocopy this page and use for each visit)
Changes in my health since the last visit (for example, new symptoms, illnesses, etc.)
Difficulties or challenges with my treatment and/or care
Questions for my doctor
Things I need from my doctor (for example, prescription refill, referral)
Action plans
320
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Index
ALP (alkaline phosphatase) test 116
A
ALT (alanine aminotransferase)
Abacavir 160
See Transferases
Aboriginal healing traditions 57-58
Alternative insemination 215
Abortion 219
Alternative therapies
Abstinence (sexual) 83
See Complementary and alternative therapies
birth control 219
Anal cancer 177-178
Access to health services
in men 120
Health Act 284-285
in women 120
Access to housing 312-313
Anti-HIV drugs 106, 126-142
Access to treatment drugs 264-268
access for immigrants 244-245
clinical trial participation 269-270
access to 264-270
compassionate access 270
and aging 250
continuous coverage (when moving) 268
and children 230-231
federal government drug coverage programs 266-267
and food 31-32
federal Special Access Program 269
and HIV life cycle 131-134
for immigrants and refugees 244-245
and substance use 44
hospitals and clinics 268
changing treatment 139-141
no coverage 268
drug combinations 134-135
over-the-counter drugs 270-271
drug interactions 44, 139
prescription drugs 264-268
drug resistance 140-141
private health insurance coverage 267-268
first line treatments 135-137
provincial and territorial drug coverage programs 265-266
genotype test 109
unapproved drugs 269-270
hypersensitivity 159-160
Acquired immunodeficiency syndrome
See AIDS
preventive treatments 101-102
resistance and adherence 137-139
Adherence (to drug regimen) 137-139
side effects 140, 146-164, 204, 251-257
Administrative staff 19
starting treatment 135-137
Aerobic exercise 202
stopping treatment 141
Affirmations and visualization 55
treatment decisions 126-127
Aging (with HIV) 249-260
treatment guidelines 127
anti-HIV drug side effects 250
Antioxidants 33-34
coping with loss 258-259
Antiretroviral drugs
financial issues 259
See Anti-HIV drugs
screening tests 257-258
Anxiety 69
side effects and symptoms (of HIV) 251-257
Aromatherapy 55
AIDS 6, 13
Assisted living housing 311
AIDS service organizations 3, 20, 73, 199-200
Assisted suicide 304
AIDS test
AST (aspartate aminotransferase)
See HIV antibody test
See Transferases
Albumin test 117
Avascular necrosis 155-156
Alcohol 44
Ayurvedic medicine 56
Alcohol abuse
See Substance use
MANAGING YOUR HEALTH
321
B
C
B vitamins 34
Calcium 35
Babies with HIV
CAM (complementary and alternative medicine)
See HIV in babies
Behaviour change 98
risk behaviour 98-102
safer sex 78-85
See Complementary and alternative therapies
Canada Pension Plan 276-277, 281
Cancer 111, 119-120, 176-178, 254
anal cancer 120, 177-178
Bilirubin test 116-117
breast cancer 120
Biopsies 118
cervical cancer 119, 177, 211
Birth control 216-219
in men 120
abortion 219
in women 119-120
abstinence 219
Kaposi’s sarcoma 176
condoms 216
Non-Hodgkin’s lymphoma 176-177
diaphragms and cervical caps 218
other cancers 178
emergency contraception 219
hormonal contraceptives 217-218
natural birth control 219
prostate cancer 258
Candidiasis
See Fungal infections
permanent birth control (sterilization) 218
Carbohydrates 29
spermicides 218
Cardiovascular disease
Blood sugar test 117
Blood tests 114-118
See Heart problems
Case managers 18
blood sugar test 117
CD4+ cells 9-12
CD4+ cell count test 107-108
CD4+ cell count 107-108, 168
complete blood count (CBC) 115
differential white blood cell count 115
percentage 108
test 107-108
electrolytes test 116
Cervical cancer 119, 177, 211
hemoglobin level tests 115
Cervical caps 218
HIV antibody test 8
Children and HIV
lipid tests 117-118
See HIV in children
liver function tests 116-117
Chlamydia 86-87
PCR test 214
Cholesterol 117-118, 152-153
platelet count 116
Clinical trial participation
red blood cell count 115
syphilis 88-89
access to treatment drugs 269-270
women 209
urea and creatinine 116
CMV infection (cytomegalovirus) 169
viral load test 108-109
Co-infections
white blood cell count 115
Body fat redistribution 151-152
Body weight 28-29
Bone loss problems 155
See HIV co-infections
Combination therapy
See Anti-HIV drugs
Community health representatives 18-19
and aging 253-254
Community health workers 20
bone death (avascular necrosis) 155-156
Compassionate access
bone scan 119
osteoporosis 155
Bone scans 119
to anti-HIV drugs 245
to unapproved drugs 270
Complementary and alternative therapies 19, 53-64, 74, 196
Breach of privacy 296
Aboriginal healing traditions 57-58
Breast cancer 120
access to 59, 270
affirmations and visualization 55
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aromatherapy 55
Diaphragms 218
ayurvedic medicine 56
Diarrhea 149-150
costs 59
Diet 28-36
herbal medicine 56
carbohydrates 29
homeopathy 56
fats 29-30
massage and touch therapies 57
meditation 57
protein 30
Dietary supplements 32-36
mind/body medicine 57
access to 270-271
naturopathy 58
antioxidants 33-34
Tai Chi 58
minerals 32-36
Traditional Chinese medicine 58
yoga 58
vitamins 34
Dieticians 18
Complete blood count (CBC) 115
Differential (white blood cell count) tests 115
Conception 214-216
Digestive problems 147-150
alternative insemination 215
diarrhea 149-150
sperm washing 215
intestinal gas 150
Condoms 79-80
birth control 216-219
loss of appetite 148-149
nausea and vomiting 147-148
female condom 80
Disabilities 192-193
HIV-positive partners 83-84
Disability benefit programs 274-279
intercourse 79-80
lubricants 79-80
Canada Pension Plan and Quebec Pension Plan Disability
Programs 276-277
oral sex 82
Employment Insurance sickness benefits 275-276
sex toys 82-83
provincial and territorial disability programs 278-279
Confidentiality
See Privacy
Continuing care 187-188
Contraception
See Birth control
Counselling and support 71-74
rehabilitation services 198
short-term and long-term disability 274-275
Disclosure 71-73, 99-100, 221-222, 292-294
by women with HIV 221-222, 293-294
legal issues 84, 292-294
privacy 294-296
complementary and alternative therapies 74
sharing drug use equipment 294
disclosure 71-72
to children 231-235
from healthcare professionals 73-74
to pre-teens 234
from partners, families, friends 72
to school-aged children 233
from the community 73
to sexual partners 84, 221-222, 292-294
rehabilitation 191-205
to teens 234
Creatinine 116
Criminal code
disclosure 292-294
CT scans (CAT scan) 119
Culture tests 118
Cytomegalovirus
See CMV (cytomegalovirus)
to toddlers/preschoolers 232-233
Discrimination 296-299
at work 298-299
human rights laws and complaints 297-298
Doctor-patient relationship 20-24, 112
substance use disclosure 47
Doctors 16, 21-24, 73
Drinking water safety 173-174
D
Dentists 17-18
Depression 70, 256
Diabetes 112, 153-154, 255
Drug allergies 159-160
Drug coverage programs 265-271
continuous coverage (when moving) 268
federal government drug coverage program 266-267
hospitals and clinics 268
MANAGING YOUR HEALTH
323
no coverage 268
private health insurance coverage 267-268
F
provincial and territorial drug coverage programs 265-266
Fats (dietary) 29-30
Drug interactions (HIV therapy) 139
Federal Extraordinary Assistance Program 283
Drug resistance 109
Federal government drug coverage programs 266-267
anti-HIV drugs 7, 140-141
Female condoms 80
genotype test 109
Financial assistance programs 274-287
Canada Pension Plan and Quebec Pension Plan 276-277, 281
resistance and adherence 137-138
Drug safety 264
disability programs 274-279
Drug treatment
Federal Extraordinary Assistance Program and the Multi-provincial
and Territorial Assistance Plan 283
See Access to treatment drugs, Anti-HIV drugs, HIV treatment
Guaranteed Income Supplement 282-283
Drug use
Immigration Loans Program 283
See Substance use
income replacement and other financial assistance programs 279-284
Drug use equipment
income tax credits 284
See Sharing drug use equipment
medical expenses 284-287
Drugs
anti-HIV drugs 125-142
municipal social assistance 280
over-the-counter drugs 270-271
Old Age Security pension 282
prescription drugs 264-268
property tax deferral 284-285
recreational drugs 40-49
Resettlement Assistance Program 284
retirement benefits 281
unapproved prescription drugs 269-270
Financial issues
and aging 259
E
income and support 274-287
Eating well
medical expenses 284-287
See Diet
retirement benefits 281
Efavirenz 44, 70, 141, 152, 159, 162
First line treatments (for HIV) 135-137
Electrolytes test 116
non-nuke-based therapy 136
Emergency contraception 219
once-daily therapy 137
Emotional health 67-74, 110
and aging 256
protease inhibitor-based therapy 136
First Nations
anti-HIV drug side effects 162-163
anxiety 69
medical expenses 285-286
Food 28-31
coping with loss 258-259
and anti-HIV drugs 31-32
depression 70
diet 28-36
HIV diagnosis 2-3
self esteem 68
stress 38-39, 68-69
safety 31, 174
Forced testing laws 299
Fungal infections 173
substance use 70-71
Emotional support
See Counselling and support
Employment Insurance sickness benefits 275-276
Exercise 36-38, 202-203
aerobic exercise 202
rehabilitation 202-203
resistance exercise 202
G
Gas (intestinal)
See Intestinal gas
General practitioners (GPs)
See Doctors
Genital herpes 89-90
Genital warts 90
GGT (gamma-glutamyl transpeptidase) test 116
Gonorrhea 87-88
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Group insurance 279-280
Guaranteed Income Supplement 282-283
Guided imagery
See Affirmations and visualization
Gynecological care 210-211
substance use 40-49
with complementary and alternative therapies 59-63
Heart problems 111, 152-153, 251-252
Hemoglobin level tests 115
Hepatitis 112, 171-172
birth control 216-219
Herbal medicine 56
pregnancy 211-216
Herpes 172-173
prenatal care 212-214
Highly active antiretroviral therapy (HAART)
See Anti-HIV drugs
H
HIV (human immunodeficiency virus) 6-12
HAART (highly active antiretroviral therapy)
See Anti-HIV drugs
Harm reduction
principles 98-99
substance use 40-41
Headaches 161-162
Health Act 284-285
Health insurance
complementary and alternative therapies 59
group insurance 279-280
private health insurance 267-268, 280
rehabilitation services 199
Healthcare costs
complementary and alternative therapies 59
drug treatment 264-271
medical expenses 284-286
rehabilitation services 199
Healthcare professionals 16-20
complementary and alternative therapists 19, 74
counselling and psychotherapy74
dentists 17-18
doctors 16, 21-24, 73
mental health professionals 19
nurses and nurse practitioners 17
nutritionists and dieticians 18
pharmacists 17
physiatrists 195
psychiatrists 73
rehabilitation therapists194-197
social workers and case managers 18
Healthcare team 16-23
for women 210
rehabilitation 194-196, 204
Healthy living 28-50, 109
diet 28-36
dietary supplements 32-36
exercise 36-38, 202-203
stress management 38-39
and aging 250-260
co-infections 170-173
differences in women 208-209
disclosure 71-73, 99-100, 292-294
HIV antibody test 8, 241
HIV life cycle 131-134
legal issues 292-304
monitoring 106-109
positive prevention 96-103
re-infection 84
superinfection 84
treatment 126-141
HIV antibody test 8, 241
forced testing laws (employment) 299
HIV co-infections 170-173
fungal infections 173
hepatitis 171-172
herpes 172-173
sexually transmitted infections 173
tuberculosis (TB) 170, 172
HIV in babies
how will I know if my baby is HIV-positive? 214
PCR test 214
vertical transmission (mother to newborn) 212
HIV in children 228-235
anti-HIV drugs 230-231
disclosure to children 231-235
HIV in men
anal cancer 120
prostate cancer 120, 258
HIV in women 208-222
anal cancer 120
birth control 216-219
breast cancer 120
cervical cancer 119, 211
clinical trial participation 209
conception 214-216
dating, sex and relationships 221-222
disclosure to partners 221-222, 293-294
MANAGING YOUR HEALTH
325
gynecological care 210-211
Hospital stays 182-188
HIV differences in women 208-209
being admitted 184-186
menopause 219-221, 252-253
communication 186-187
pregnancy 211-216
going home 187-188
prenatal care 212-214
psychosocial issues 209-210
preparing for hospital stay 184
Hospitals and clinics
tests 119-120, 258
HIV prevention
access to treatment drugs 268
Housing 312-314
alternative insemination 215
access to housing 312-313
behaviour change 98
assisted living 311
conception 214-216
how to keep your housing 313-314
condoms 79-84, 216
non-profit rental housing 310
disclosure 99-100, 221-222, 293-294
private-market rental housing 310
harm reduction 98-99
shelters or transitional housing 311
PEP (post-exposure prophylaxis) 102
social or subsidized housing 310-311
positive prevention 96-103
PrEP (pre-exposure prophylaxis) 102
supportive housing (assisted living) 311
HPV (human papillomavirus) 90, 119-120
safer sex 78-85
and anal cancer 90, 120, 177-178
shared responsibility 98
and cervical cancer 119, 177, 211
sharing drug use equipment 47-48, 294
sperm washing 215
and genital warts 90
Human immunodeficiency virus
vertical transmission 212, 214
HIV re-infection 84
See HIV (human immunodeficiency virus)
Human papillomavirus
HIV superinfection 84
HIV test
See HPV (human papillomavirus)
Human rights laws and complaints 297-298
See HIV antibody test
Hypersensitivity (to anti-HIV drugs) 159-160
HIV transmission 7-8
low viral load 85, 102, 215
pregnancy 211-212, 213-214
preventive treatments 102
risk behaviour 98-102, 215-216
vertical transmission (mother to newborn) 212
HIV treatment 126-141
anti-HIV drugs 126-141
changing treatment 139-141
first line treatments 135-137
for children 230-231
resistance and adherence 137-139
starting treatment 130-131, 135-137
stopping treatment 141
treatment decisions 126-127
treatment guidelines 127
HIV-related infections
See Infections
HIV-related symptoms
See Side effects and symptoms (of HIV)
Homeopathy 56
I
Illegal immigrants
See Non-status people
Imaging (medical) 119
Immigrant services 242-246
access to medical care 242-245
access to anti-HIV drugs 244-245
legal support 245-246
Immigrants 239
Immigration Loans Program 283
Immigration system 238-239
immigrants, refugees and non-status peoples 239-240
HIV testing 241-242
medical inadmissibility 241-242
Immune system 8-10
and aging 251-257
life-threatening infections and cancers 168-169
monitoring 106-109
Income replacement and other financial assistance programs 279-284
financial assistance programs 279-284
Hormonal contraceptives 217-218
group insurance 279-280
Hospices 188
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private insurance 280
Legal issues 292-304
Income support and work 200-201
disclosure 292-294
financial assistance programs 279-284
discrimination 296-299
Income tax credits
forced-testing laws 299
Disability Tax Credit Certificate 284
powers of attorney 302-303
medical expenses 286-287
privacy and confidentiality 294-296
Infection prevention 173-176
suicide and assisted suicide 304
food safety 31, 174
HIV prevention 78-85, 212, 214-216
wills 303-304
Legal services 300-302
pet safety 174
costs 300
sexually transmitted infections 86-90
immigration 245-246
vaccinations 175-176
lawyers 300-302
water supply safety 173-174
with children 229
Infections
HIV 6-13
legal aid 300-301
LGV (lymphogranuloma venereum) 87
Life changes 101
Life-threatening infections 111, 168-169
HIV co-infections 170-173
CMV infection (cytomegalovirus) 169
HIV re-infection 84
MAC infection 169
HIV superinfection 84
PCP infection (pneumocystis pneumonia) 169
hygiene-related infections 173-174
life-threatening infections 168-169
toxoplasmosis infection 169
Lipid tests 117-118
sexually transmitted infections 86-90
cholesterol 117-118
Injection drug use equipment
See Sharing drug use equipment
triclycerides 118
Lipoatrophy
INR (international normalized ratio) tests 117
Insemination
See Body fat redistribution
Lipodystrophy
See Alternative insemination
Insulin resistance 153-154
See Body fat redistribution
Liver function tests 116-117
Interim Federal Health Program 286
albumin test 117
Intestinal gas 150
alkaline phosphatase (ALP) and gamma-glutamyl transpeptidase
Inuit
(GGT) tests 116
medical expenses 285-286
bilirubin tests 115-117
Iron (dietary) 35
INR (international normalized ratio) 117
transaminases 116
K
Liver problems 157-158
substance use 40-41
Kaposi’s sarcoma 176
Kidney function tests
urea and creatinine 116
Living wills 302
Long-term disability benefits
See Disability benefit programs
urinalysis 118
Loss
coping strategies 258-259
L
Loss of appetite 148-149
Lactic acidosis 161
Lubricants 79-80
Lawyers 300-302
Lymphogranuloma venereum
fees and legal costs 300-301
See LGV (lymphogranuloma venereum)
immigration 245-246
Legal aid 300-301
immigration 245-246
MANAGING YOUR HEALTH
327
Non-nuke-based therapy 136
M
Non-prescription drugs
MAC infection (mycobacterium avium complex) 169
See Over-the-counter drugs
Marijuana 45-46, 149
Non-profit rental housing 310
Market rental housing 310
Non-status people (immigration) 240
Massage and touch therapies 57
Nurse practitioners 17
Masturbation 83
Nurses 17
Medical expenses 284-287
Nutrition
access to health services 284-287
drug treatment 264-268
See Diet
Nutritionists 18
income tax credits 286-287
Interim Federal Health Program 286
Non-insured Health Benefits Program 285-286
Medical inadmissibility (immigration) 241-242
exemptions 241-242
O
Occupational therapy 194
Old Age Security pension 281-282
Once-daily therapy 137
Meditation 57
Opportunistic infections
Men with HIV
See Infections
See HIV in men
Menopause 219-221, 252-253
Oral sex
safer sex 78
Mental health
See Emotional health
Osteopenia
See Bone loss problems
Mental health professionals 19, 73
Metabolic problems 150-154
Osteoporosis
See Bone loss problems
body fat redistribution 151-152
heart problems 152-153
Over-the-counter drugs
access to 271
insulin resistance and diabetes 153-154
Mind/body medicine 55
Minerals (dietary) 32-35
P
calcium 35
Pancreatitis 158
iron 35
Pap tests 119-120
selenium 35
Party drugs
See Recreational drugs
zinc 35
MRI (magnetic resonance imaging)
See Imaging
Multi-provincial and Territorial Assistance Plan 283
Muscle problems 160-161
lactic acidosis 161
Mycobacterium avium complex
See MAC infection (mycobacterium avium complex)
Patient rights 22-23
Patient-doctor relationship
See Doctor-patient relationship
PCP infection (pneumocystis pneumonia) 13, 107, 128, 161
PCR test 214
PEP (post-exposure prophylaxis) 102
Peripheral neuropathy 163-164, 204
Personal health record 17, 317-320
N
Pet safety 174
Natural birth control 219
Pharmacists 17
Physical examination 113
Naturopathy 58
Physical health 36-38
Nausea 147-148
training tips 38
Neuropathy
See Peripheral neuropathy
Non-Hodgkin’s lymphoma 176-177
Non-insured Health Benefits Program 285-286
Physical rehabilitation 194-195
occupational therapy 194-195
physical therapy 194
speech-language therapy 195
328
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Physical therapy 194-195
Psychosocial rehabilitation 196-197
Physicians
See Doctors
work-related 197
Psychotherapy 74
Physiotherapy
See Physical therapy
Platelet count 116
Pneumocystis pneumonia
Q
Quebec Pension Plan 281
Quebec Pension Plan Disability Program 278-279
See PCP infection (pneumocystis pneumonia)
Positive prevention 95-103
behaviour change 98
R
disclosure 99, 100
Recipes
harm reduction 98-99
principles 98-99
risk behaviour 100-102
shared responsibility 98
Post-exposure prophylaxis
See PEP (post-exposure prophylaxis)
Power of attorney 302-303
chicken veggie soup 33
fruit shake 36
Recreational drugs 40-47
marijuana 45-46, 148-149
Red blood cell count 115
Refugees 237-246
Rehabilitation 191-205
personal care and living wills 302
costs 199
property 303
physical rehabilitation 194-195
Poz prevention
See Positive prevention
Pre-exposure prophylaxis
See PrEP (pre-exposure prophylaxis)
Pregnancy 211-216
conception 214-216
psychosocial rehabilitation 196
services 194-200
strategies 201-203
Re-infection
See HIV re-infection
Relationships
Prenatal care 213-216
disclosure 71-72, 99-100, 221-222, 292-294
PrEP (pre-exposure prophylaxis) 102
safer sex 91
Prescription drugs
access to prescription drugs 264-265
drug safety 264
sharing drug use equipment 294
Reproductive health
See Gynecological care
emotional health 73-74
Resettlement Assistance Program 284
unapproved prescription drugs 269-270
Resistance exercise 202
Privacy 296-298
breach of privacy 296
legal limits 294-296
Private health insurance 280
drug coverage 267-268
Professional help
See Healthcare professionals, Lawyers
Retirement benefits 281
Right to privacy
See Privacy
Risk behaviour 100-102
desire for unprotected sex 101
HIV-positive partners 83-84
life changes 101
Property tax deferral 284
loss of inhibition 42
Prostate cancer 120, 178, 255, 258
preventive treatments 102
Protease inhibitor-based therapy 134
resistance and adherence 137-139
Protein (dietary) 30
serosorting 101
Provincial disability programs 278-279
Provincial drug coverage programs 265-266
Psychiatrists 73
substance use 40-42, 102
Risk of HIV infection
See HIV prevention
Psychological support
See Counselling and support
MANAGING YOUR HEALTH
329
digestive problems 147-151
S
emotional problems 162-163
Safer sex 78-91
headaches 161-162
and low viral load 85, 215
in children 231
between HIV positive partners 83-84
infections, cancer and other complications 111
disclosure to sexual partners 84-85, 99-100, 221-222, 292-294
liver problems 157-158
in relationships 91
metabolic problems 150-154
Scope tests 119
monitoring 106-120
Screening tests
muscle problems 160-161
See Blood tests, Tests
pancreatitis 158
Selenium (dietary) 35
peripheral neuropathy 163-164
Self care 98-99
rehabilitation 204
coping with loss 258-259
severe drug allergies 160
healthy living 27-40, 109
skin problems 159
rehabilitation strategies 202-203
Skin problems 159
stress management 38-39
Sleep problems 162-163
Self-esteem 68
Social assistance 280
Serosorting 101
Social housing 310-311
Services to immigrants, refugees and non-status people with HIV
Social workers 18
See Immigrant services
Sex toys
Special Access Program 269
Speech-language therapy 195
safer sex 82-83
Sperm washing 215
Sexual dysfunction 90-91
Spermicides 218
Sexual health 77-91, 110
Sterilization 218-219
and aging 256-257
risk of HIV infection 7
safer sex 78-91
sexually transmitted infections 86-90, 175
Sexually transmitted infections 86-90, 173
STIs (sexually transmitted infections)
See Sexually transmitted infections
Street drugs
See Recreational drugs
Stress 68-69, 101
chlamydia 86-87
Stress management 38-39
genital herpes 89-90, 172-173
Stroke 152-153
gonorrhea 87-88
Subsidized housing
HPV and genital warts 90
LGV (lymphogranuloma venereum) 87
See Social housing
Substance use 40-49, 70-71, 102
prevention 86-90
alcohol 44
syphilis 88-89
and anti-HIV drugs 44
Shared responsibility 98
harm reduction 40-49
Sharing drug use equipment
liver problems 44
disclosure 294
loss of inhibition 42
harm reduction 46-49
marijuana 45-46
Shelters 312
recreational drugs 47
Short-term disability
risk behaviour 43
See Disability benefit programs
Sickness benefits
See Disability benefit programs
Side effects and symptoms (of HIV) 129, 146-164
aging 251-257
anti-HIV drugs 140, 204
bone loss problems 155-156
330
tobacco 45
Suicide
legal issues 304
Superinfection
See HIV superinfection
Supplements (dietary)
See Dietary supplements
WWW.CATIE.CA • 1.800.263.1638
Supportive housing 313
Sustiva
See Efavirenz
V
Vaccinations 175-176
for children 229
Symptoms
recommendations 175-176
See HIV-related symptoms
Syphilis 88-89
Vertical transmission (mother to newborn) 212, 214
Viral load 85, 102, 108-109, 140
conception 213
T
HIV transmission 7
T cells
See CD4+ cells
test 108-109
Visitors, students and people on work visas
Tai Chi 58
Tattoos and piercings 40
medical requirements 242
Visualization
TB
See Affirmations and visualization
See Tuberculosis (TB)
Vitamins 32-34
Territorial disability programs 278-279
access to 270
Territorial drug coverage programs 265-266
B vitamins 34
Tests 106-120, 257-258
vitamin C 34
biopsies 118
vitamin D 34
blood tests 114-118
bone scans 119
vitamin E 34
Vomiting 147-148
CT scans (CAT scan) and MRI 119
culture tests 118
drug resistance tests 109
W
for men 120
Water supply safety 173-174
for women 119-120, 258
Welfare assistance
See Social assistance
genotype test 109
imaging 119
White blood cell count 115
pap tests 119-120, 211
Wills 303-304
scope tests 119
Women and HIV
See HIV in women
urinalysis 118
x-rays 119
Tobacco 45
Workouts (exercise) 38
Workplace discrimination 297-299
Toxoplasmosis infection 169
Traditional Chinese medicine 58
X
Transaminases 116
X-rays 119
Transitional housing 311
Treatment (of HIV)
See Anti-HIV drugs, HIV treatment
Trigylceride levels 118, 154
Tuberculosis (TB) 172, 176
U
Unapproved prescription drugs
access to 269-270
Y
Yeast infections
See Fungal infections
Yoga 58
Z
Zinc (dietary) 35
Urea and creatinine 116
Urinalysis 118
MANAGING YOUR HEALTH
331