New Treatments - The African Eye Trust

The
AfricanEye
THE UK’S FIRST AFRICAN HIV TREATMENT PUBLICATION OCTOBER-DECEMBER 2007
VOICE
New
Treatments
When to start medication and
what is best to take
plus
Lipodystrophy
Treatment Q&A
Treatment Advocacy
FREE COPY
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contents
New Treatments Sydney Conference
HIV Treatment Q & A
Newsbrief
HIV Treatment Advocacy – the African perspective
Study Finds Atazanavir Safe
Lipodystrophy
Development of a web-based integrated HIV Care Pathway
Antiretroviral Drug Chart
Sexual Health
HIV Care and support to young people
Cardiovascular Disease
Events
Letters to the Editor
Personal Voices 2007
What is British HIV Association
Opinions
Directory
Production Team
Editor in Chief
Dr. Melba N Mangolwa
Deputy Editor in Chief
Towela Munthali
Editor
Gertrude Kamya Othieno
Graphic Designer
Ian Lynch
Editorial Group
Rhon Reynolds
Zoe Smith
Elias Phiri
Elijah Amooti
Dean. W. Thomson
Deidre Love
African Eye Trust Advisors
Badru Male
(Techinical Advisor)
Simon Collins
(Editorial Board Advisor)
Cheikh Traoré
(Health Promotion Advisor)
Gertrude Othieno
(Research Advisor)
New Advisors
Jeanette Meadway
(Senior Advisor)
Gus Cairns
(Editorial Consultant)
The African Eye Voice magazine is published by
The African Eye Trust (TAET)
Registered Office: Suite 107, Maddison House,
226 High Street, London, England CR9 1DF
Email: [email protected]
Website: www.africaneyetrust.org.uk
Registered Number: 06124839
All opinions expressed and photos published remain the property
of The African Eye Trust
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Editorial
by guest editor
Pamela Kaseke-Mushore
Sunshine and Rain
I thought of giving this editorial page a twist to the norm. Eliminate
the scientific wording and have a ball, educating ourselves on
topics laid before us. As you will discover this edition is blasting
with information of treatment that’s available presently and that
in the near future, which will eventually jump from one side of the
pharmaceutical wall to the hospitals we flood daily.
“Oh yes” no one enjoys popping tablets or gurgling medicinal
cocktails (as I call them), but these undesirable mechanisms are
fundamental to ones healing. For some of us who have embraced
these irritating, throat blocking and colourful medicines, we wait
anxiously for the improved versions to emerge from deep seas.
Simon Collins unravels this vital information regarding the new
treatment, which was discussed from the sunny country of Australia.
Evidently we notice that these medications have become the talk of
the town. Be it be at the ‘African Treatment Advocacy Training’, they
take precident. Presented is how they will work and the dreaded side
effects that individuals should look out for. Are we to see more cases
of Lipodystrophy? As for me whose still battling with the effects of my
medications, from a size 12 to 16, I just don’t know! Rather grateful
that I am presented with a longer life span. Though, not an easy sail,
but landing ashore with treatable injuries. I’m sure some of you hold
these same sentiments.
As explained in the well briefed Lipodystrophy document, most of
the questions I held, where uplifted and gave me more confidence to
speak about this side effect, although my tongue still can’t produce
the proper pronunciation of the word. This instantly brings tears to
my eyes. If I then, can’t pronounce this word how about our children
that suffer from HIV? Trying earnestly to explain to their friends some
of these HIV terms, the tablets they have to endure taking. Lesley
Naylor brings some light to some issues faced by children affected
with HIV.
I guess by now, you ready to dig your noses into the stories that await
your appetite. Remember to exercise to maintain that heart.
As much as we welcome the good old sunshine, the rainy days do
come. Embrace your medication for they bring health, even though
the side effects are a bugger.
Enjoy…
Pamela is a treatment advocate and Director of Compassion
Acceptance Need (CAN)
VOLUNTEERS NEEDED
The African Eye Voice is looking for volunteer
editors, proofreaders and writers - If you are
interested in this exciting opportunity please email
the editor at [email protected]
Would you like to appear as a Guest Editor
for The African Eye Voice Magazine?
Contact [email protected]
with your ideas for an editorial.
TREATMENT
New Treatments Sydney
Conference
by Simon Collins, HIV i-Base
The International AIDS Society organises two major conferences. The World AIDS conference covers everything – science, research,
prevention, social and community issues and is held every two years and is attended by 25,000 people. In the alternate years it organises
a smaller meeting, attended by about 5,000 people, which is focused mainly on science and research.
This year, in July, the ‘science’ conference
was held in Sydney Australia and partly
because of the distance and costs, only a
few people were able to attend from the UK.
Nevertheless, for those lucky enough to
go, it included a lot of new and important
studies. For those unable to go, nearly all the
important sessions are available to watch
online, and if you have access to broadband
internet, spending a few hours following
these sessions is almost as good as being
there. If you get a chance, then try to visit
the conference website to see the full results
of this report. (www.ias2007.org)
Treatment strategies:
when to start
treatment
One issue came up in many different
presentations and also had a session to
itself. This is the question of ‘when to start
treatment’. Although guidelines all say
start before your CD4 drops below 200
cells/mm3, and a few say start between
200 and 350 cells/mm3, there is very little
information about whether there is a benefit
to start even earlier.
are on treatment have fewer life-threatening
illnesses and complications.
This included a lower risk of heart and liver
disease that many people first thought were
related to HIV drugs, rather than HIV itself.
This was quite a surprise, and researchers
are planning a new study – called START - to
look at starting treatment above 500 cells/
mm3 compared to waiting until it reaches
350 cells/mm3.
Details of the new study were also presented
at the conference, together with lots of other
research about why earlier treatment could
be important.
This included looking at results from the
large SMART study in almost 6,000 patients
who were randomised to using either
continuous treatment or taking a treatment
break and restarting treatment when their
count reached 250 cells/mm3.
In Sydney, we saw some of the first results
that might explain why people taking a
treatment break in the SMART study had
much higher rates of serious illnesses,
including fatal illnesses. The difference was
so great that the study that was planned to
run for over seven years, was stopped after
only two years.
Part of the explanation, may be that having
detectable viral load keeps your immune
system working in overdrive – that it is
always over activated. One of the markers
for the risk of heart disease was shown to
be higher in HIV-positive people anyway,
and that in the SMART study this marker
dropped when people were on treatment,
and increased fairly dramatically when they
stopped treatment or were off-treatment.
Although the parts of this picture are
only starting to be put together, a simple
conclusion is that staying on treatment for
most people is much better than coming off.
The reason that the new ‘when to start’
study needs to randomise people to early or
late treatment, is so we can also look at the
risks from earlier treatment too. We need to
balance the benefits with the risks – but the
results could surprise many people.
The information about the benefits of
starting before 200 is very clear – this is
when your risk of opportunistic infections
(OIs) start to become much higher. The risk
is still there when your CD4 count is between
200 and 350, but the effect is not as
dramatic. Most of this supporting evidence
comes from looking at large databases
of people – called ‘cohorts’ who started
treatment at different times – and usually
included results from many thousands of
people.
The most recent analysis from these cohorts
that were presented in Sydney, showed that
the risk of HIV-related and non-HIV-related
illnesses can be significant at even higher
CD4 counts too. Even at counts over 350,
and perhaps even over 500, people who
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The African Eye Voice
October - December 2007
Currently, both doctors and HIV-positive
people, try to put off treatment for as long as
possible - ‘until they really need it’. The more
we learn though, it may be that this is not
such a good approach. As long as treatment
is easy to take and doesn’t cause difficult
side effects – and this is a big ‘if’ - we should
perhaps be thinking much more about
treatment as ‘protective’. Starting earlier,
and reducing viral load earlier, can also give
you a stronger CD4 count for many more
years, and over 20-30 years this extra boost
could be important.
If this is true, then the benefits of earlier
treatment may make people understand
the protective effect better – and this may
even help in the community in terms of
encouraging more people to test earlier.
The number of people, in all countries, who
only get diagnosed after their CD4 count is
well below 200 cells/mm3 is still shocking.
This is still one of the biggest issues facing
African people in the UK today.
The webcast from this session is online:
http://www.ias2007.org/pag/PSession.aspx?s=18□2
Information about the START trial is available here: http://www.insight-trials.org/
Internet links for slide sessions on new drugs:
http://www.ias2007.org/pag/PSession.aspx?s=48
http://www.ias2007.org/pag/PSession.aspx?s=150
http://www.ias2007.org/pag/PSession.aspx?s=151
Summary of new drugs at Sydney
Drug name
Raltegravir
Drug class
Integrase inhibitor
Etravirine
NNRTI
Darunavir/r
Protease inhibitor
(boosted with
ritonavir)
Maraviroc
CCR5 inhibitor
Study results
One-year results in people using treatment
for the first time, showed raltegravir was
as potent as efavirenz, but had fewer side
effects and less impact on cholesterol and
triglycerides.
The DUET studies, where treatmentexperienced patients used optimised
background regimens including darunavir
plus either etravirine or placebo, showed
that this NNRTI can help people with some
NNRTI-resistance
In the TITAN trial, darunavir out-performed
Kaletra in people with early drug resistance
and treatment failure.
One year results from the MERIT study
comparing maraviroc to efavirenz in people
using treatment for the first time, found
that maraviroc was pretty good, but that it
was not as effective as efavirenz.
Comment
Raltegravir looks like is could be useful both in
experienced and naïve patients – but this will
also depend on the price that the company sets.
As we went to press raltegravir was expected to
get approval in the US
Some NNRTI mutations can still stop this
drug from working so your individual history is
important,
Etravirine is available in the UK on an Expanded
Access programme.
With Kaletra well established as the
recommended first choice in people failing
treatment, it was impressive to see darunavir/r
beat this.
Although maraviroc was just approved in the
US, how and when it will be used is still unclear.
People need to have results from a tropism test
to see if CCR5 inhibitors will work with their
virus, before using maraviroc.
Newsbrief
The African Eye Trust welcomes Towela
Munthali, the newest addition to our editorial
team. In her volunteer capacity as deputy editor
in chief, she will be responsible for The African
Eye Trust communication and will work hand in
hand with the editor in chief towards ensuring
a high quality and standard for our flagship
publication, the African Eye Voice.
October - December 2007
“HIV medicine has developed tremendously in the last few years.
Fortunately this means that treatments are far easier to take compared
to only five years ago. However, social exclusion is still a barrier for many
Africans to fully benefit from modern advances in HIV care. Community
advocates therefore have a crucial role to play to bridge the gap between
scientists and the community”.
Cheikh Traoré,
AHPN trustee/ Health Promotion Adviser, TAET
The African Eye Voice
5
TREATMENT
HIV Treatment Q & A
by Elijah Amooti, and Badru Male, HIV Treatment Advocates
I am on Sustiva
and doing well.
Do I need to
change to the so
called new drugs?
This is the easiest question to answer: no,
you don’t. My motto is “If it ain’t broke, don’t
fix it,” meaning that if your HIV is suppressed
and you don’t have side effects, then there
is no reason to change. The longer you
stay on your current regimens, the more
alternatives there will be for you if you do
have to change.
My doctor tried to convince to
take the injectable drug T-20. I
refused, as he told me that soon
they would be new drugs that
could help me with the drug
resistance I had at that time
and this treatment will be oral.
I am doing well on the new
drugs now, and my resistance
test was OK. But has refusing T20 affected my life? And does it
really work? Doctors don’t talk
about it these days.
The reason your doctor
was urging you to take T20 (also called Fuzeon or
enfuvirtide) was probably
because, at the time, it was
one of the few drugs that
would work against your
drug-resistant HIV. It is, in
fact, a very effective drug
and has undoubtedly
saved some lives: but it’s
understandable that, if another choice is
available, most people would rather take an
oral drug than one they have to inject twice
a day.
Since then, other drugs have come along
that work against multi-drug resistant HIV,
including darunavir (Prezista), raltegravir
(Isentress), etravirine and maraviroc. This
has meant that people previously dependent
on T-20 now have alternatives, so fewer
people are using it. However, it may still have
a place in treating people with very drugresistant HIV.
One thing: you talk about “the drug
resistance I had at that time”. If you have
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The African Eye Voice
drug-resistant HIV, it doesn’t go away
completely. It’s just that new drugs have
come along that can deal with it. But if you
fail to take these properly, HIV can become
resistant to them as well.
Who discovered the first Anti
HIV therapy? We take these
drugs but we don’t even know
that first person who saved our
lives. Please do let us know and
is that person alive?
There’s probably not one person in
particular who should be mentioned, but
many scientists and researchers. It was a
remarkable achievement to develop effective
treatments for an incredibly deadly virus
within less than 15 years of it first being
discovered, but it was a team effort. For me,
however, (and this is a personal opinion), the
following names stand out:
• Jonathan Mann and Peter Piot, who
were among the team first to trace HIV
infections in Africa. They went on to
become the first and second heads of
UNAIDS, the UN’s AIDS section.
• Luc Montagnier and Frances BarreSinoussi, the French scientists who
discovered HIV
• Robert Gallo, a controversial scientist,
he also claimed to discover HIV, but
although the French got there first (or
about the same time), he helped to
develop the HIV test and has gone on
to make many other discoveries in HIV
medicine
• David Ho is a Taiwanese-American
scientist who presented some of the
first studies showing that combination
therapy could suppress HIV effectively.
What is toxicity? I read the
medical data on the internet
and I don’t understand so
many words. Can we have
more meanings of medical
words explained to us in the
magazine?
Toxicity is exactly what happened to the
person above - it means a drug side effect.
Toxic means poisonous. Medicines work
because they are more poisonous to the
bugs infecting us (in this case HIV) than they
are to us, but all medications can cause
some degree of toxicity to the person taking
them as well. Whether you get toxicity from
a particular drug depends on many factors
and doctors cannot predict in advance who
will get side effects and who won’t. The
reason they do drug safety trials before they
put them on the market is to make sure that
as few people as possible suffer side effects.
All these people, except Jonathan Mann,
who died in a plane crash, are still alive. But
many other people were involved.
Just as important are the many people
infected and affected by HIV in the different
countries in the world, who through their
campaigning ensured, and continue to
ensure, that combination therapy goes to as
many people as possible who need it.
October - December 2007
Some time ago when I
was taking AZT it made
my body darker. My
friends even used
to give me funny
names. Do other HIV
drugs do this too?
What is
ritonavir
and what is
Kaletra?
Darkening of the skin can be caused by
any of the anti-HIV drugs but is especially
common in people who take AZT, 3TC or
FTC. These drugs are mainly taken in the
combination pills Combivir and Truvada.
Skin darkening, or hyperpigmentation, is
an interesting example of a drug side-effect
no one thought was important when it was
largely white people taking the drugs. Less
than one in a hundred northern Europeans
get it but about one in twelve black African
people get it and about one in 25 Asian
people. It’s not a threat to the health but, as
you have found out, it can cause unwelcome
changes to your appearance. Most people
get it mainly on the palms of the hands and
soles of the feet, but a smaller number get it
more severely. It is reversible once you stop
taking those drugs.
Because it’s not life-threatening, your doctor
may be reluctant to change your drugs just
because of it. You may need to make that
case that it is affecting your quality of life.
Both are anti-HIV drugs of the type called
protease inhibitors (PIs), and Kaletra is in
fact a combination pill containing ritonavir
and another PI called lopinavir. Ritonavir is
also sold by itself as Norvir.
Ritonavir was one of the first PIs developed
but is now never used as an anti-HIV drug
in itself because it was very toxic (nasty
side effects) and involved taking a lot of
pills. However it was then discovered that
had the property of ‘boosting’ the levels of
other drugs in your body, and in particular,
other PIs. This was a blessing, as previously
people taking PIs had to take large doses
in order to get enough drug into their body
to HIV, and PI-based therapy often failed
because of this.
As a result these days if you take a PI drug
such as atazanavir (Reyataz), saquinavir
(Invirase), fosamprenavir (Telzir), tipranavir
(Aptivus) or darunavir (Prezista), you will be
given one or two capsules of Norvir to take
with it. Lopinavir is different because the
same company makes Norvir, so they have
combined the two drugs into one Kaletra
tablet.
These questions are collected from our
HIV Treatment Information Workshops
and from our readers - If you have any
treatment questions please email
[email protected]
Newsbrief
THT, NAM and Positive Place
now the providers for the
restructured South London
HIV Partnership.
New People ready
to help people living
with HIV obtain clear
treatment information
The African eye voice Magazine is happy
to introduce the treatment advocate, Gus
Cairns, as an editorial consultant. This is an
honorary appointment by the management
of the African Eye Trust.
The South London HIV Partnership (SLHP)
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The Management has also recently
appointed a long serving friend of the African
Eye Trust, Dr. Jeanette Meadway, as a senior
adviser to the work of the African Eye Trust.
Dr. Meadway has been working in HIV for the
last 25 years.
We would also like to thank all those who
have contributed to the Trust and the
publication in different ways including
Winnie Sseruma and the entire advisory,
management and production teams.
October - December 2007
has been restructured to provide quality
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services for South London residents. The
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reorganisation and restructuring exercise
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involves needs assessment, evaluation
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of current
service provision, service user
consultation, funding stakeholder and other
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stakeholder consultation and tendering.
Terrence Higgins Trust will provide Advice
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and Advocacy, and in partnership with NAM,
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will provide HIV Health Support Service and
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in partnership with the Positive Place will
also provide Counselling, Emotional and
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Peer Support.
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The service coordination function has also
been redesigned with a data network which
will allow for improved referrals between
providers as well as greater understanding
of service demand, service gaps and
service user satisfaction. To ensure that
quality service will always be provided, a
new monitoring, verification and evaluation
function has also been put in place.
Matt Dixon a commissioning manager from
Croydon PCT told the African Eye Voice
reporter that all these services will be
operational from October 2007.
Lastly The Pan London tenders are now
open for consultation a group of officials in
the HIV sector across London were recently
invited for consultation by Ray the new pan
London HIV prevention manager.
The African Eye Voice
7
TREATMENT
HIV Treatment
Advocacy – the
African perspective
What is advocacy and
who is a treatment
advocate?
Advocacy is the act of arguing on behalf of
a particular issue, idea or person. Therefore
HIV treatment advocacy is the act of arguing
on behalf of people taking HIV treatments on
issues related to access to quality, tolerable
and consequently effective treatment.
Advocacy can facilitate adherence to
treatments and empower users at the same
time.
A treatment advocate is that individual who
has developed HIV treatment literacy and
able to understand and advocate in the
interests of the needy or vulnerable.
A treatment advocate should work to
improve client/clinician communication and
relationship.
HIV diagnosis starts from the hospital or
GUM clinic and the first point of contact
is the Doctor. You trust your Doctor, but
Doctors speak a different language from
patients. They always have limited resources
and time to talk to patients, so patients
never have time to understand all that they
should understand. Once HIV treatment is
prescribed, it is expected to work. Though
the patients are the most concerned about
getting better, sometimes it is dicey, with all
the adverse effects and some other social
needs that are mainly the main obstacles of
adherence to medication.
HIV infection can be very traumatizing.
Stigma, discrimination and people’s
attitudes towards people living with HIV have
not helped the situation. This has resulted
into non-disclosure, social isolation and not
adhering to medication.
Lack of proper knowledge about medication
has resulted into many users developing
drug resistant strains without them
knowing just because they did not take
their medication properly. There is no
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The African Eye Voice
by Badru Male, HIV Treatment Advocate
doubt, the widespread use of HIV Highly
Active Antiretroviral Therapy (HAART) has
dramatically reduced HIV associated
morbidity and mortality in the UK.
Very high levels of adherence to heart are
needed for a successful response and
disease control. Levels of adherence have
to be above 95% for a successful therapy
and anything below have been associated
with poor control of the virus and immune
response (Paterson, 2000). Adherence
interventions generally aim to inform people
about HIV treatments and thus improve
adherence, or to generate behaviour change
through incentives, suggestions or emotional
support. These strategies are often dubbed
cognitive, behavioural and affective
interventions. Adherence to HIV treatment is
a skill facilitated by having good knowledge
about medication and how it works, being
cognitively well enough to remember to
take the mediation and acquiring full
satisfaction from taking the medication. High
adherence is a process, not a single event,
and therefore adherence support must be
integrated into clinical follow up (Poppa et al,
2004).
People from the migrant population,
especially African have several needs, lack
of which may result in barriers to adherence
to their HAART regimens. Lack of social
needs like housing, sufficient income and
family support can have a devastating effect
on adherence. Most of the people from
migrant communities suffer from these
problems.
prepared to bridge the gap between the
clinicians and the patients. They are trained
to understand how HIV medication work
in a lay man’s language, why medication
fails, and what treatments are suitable for
particular patients and patients need to
adhere to their treatment. They also act as
a bridge between the civil society and the
pharmaceutical companies that develop
the antiretroviral drugs. They run seminars,
workshops and training sessions to educate
the patients and general public about
HIV treatments and treatment support.
The tasks of a treatment advocate are
hard. Advocates have to learn scientific
knowledge and put it into the language of
needy people, let them understand and
be understood. Information given out by
treatment advocates should be of quality,
up to date and standard. HIV knowledge
and information is dynamic and so are the
advocates. They should keep up to date with
all changes and information to be able to
inform clients the truth about changes and
up dated information. Treatment advocates
in most cases talk about changes before
many doctors, as they are always up to date
with information.
The African Eye Trust, with the help of
HIV i-base and volunteers from various
orgnisations have pioneered to run
Advocate training sessions for the African
Communities in the UK. The first session
was held on the 31st May at the Medical
Research Council (MRC).
Quite big numbers of asylum seekers
have been victims of torture and rape.
Psychologically, they have been traumatized
and, living with HIV and taking treatment are
a constant reminders of their ordeals. They
whenever possible try to forget all reminders
of how they acquired HIV in the first place.
Considerable effort is required to enable
such people to adhere to medication.
HIV treatment advocates are people
October - December 2007
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National African
Treatment Advocates Workshop
come along and
Train to be an Advocate
help yourself while helping others by providing clear treatment information
When
20th Sept, 24th Oct, 22 Nov 07, 9:30 - 4:00pm
Where
MRC Clinical Trials Unit,
222 Euston Road, London, NW1 2DA
To attend please email [email protected]
for the attention of Fred or post back to our address
The African Eye Trust
Suite 107, Maddison House
226 High Street, London CR9 1DF
Fax: 020 7841 7482
POST BACK
Name(s)
Organisation
Job Title
funded by an educational grant from
This training is organised by
The African Eye Trust
TREATMENT
Study Finds
Atazanavir Safe
by Michael Carter, Treatment News Editor, NAM
The protease inhibitor, atazanavir (Reyataz)
is safe and effective in HIV-positive
patients with liver cirrhosis, according to a
retrospective Spanish study presented as
a poster to the recent International AIDS
Society Conference on HIV Pathogenesis,
Treatment and Prevention in Sydney.
The investigators, from the Hospital Ramon
y Cajal in Madrid, found that patients with
cirrhosis who received atazanavir had both
an immunological and virological response
to the drug, but did not experience any
clinically significant liver-related side-effects.
Large numbers of HIV-positive patients
are coinfected with either hepatitis B virus
and/or hepatitis C virus, and liver-related
causes of death, often caused by hepatitis
coinfections, are an increasingly important
cause of mortality amongst HIV-infected
individuals.
There are, however, limited data about the
safety and effectiveness of antiretroviral
drugs in patients with advanced liver
disease. This is because studies into the
safety and efficacy of drugs normally exclude
patients with cirrhosis.
Although patients coinfected with hepatitis
C virus who received atazanavir in clinical
trials showed no evidence of significant
liver-related toxicity, there are no data
about the safety of the drug in patients with
advanced liver disease. Atazanavir therapy
is associated with a yellowing of the skin
in some patients as the drug can increase
levels of bilirubin. Although this is not
medically dangerous, some patients find it
distressing and stigmatising.
Accordingly, investigators in Madrid
undertook a single-site study to assess
the immunological and virological efficacy
of atazanavir with or without ritonavir
boosting in patients with compensated or
decompensated cirrhosis. They all examined
ALT and bilirubin levels to see if the drug
in its boosted or unboosted forms was
associated with any significant liver-related
side-effects.
October - December 2007
The study involved patients who received
treatment between June 2003 and
April 2007. Follow-up data for one year
were analysed. A total of 34 individuals
were included in the study. All were
coinfected with hepatitis C virus, seven
had decompensated cirrhosis and 27 had
compensated cirrhosis.
The majority of patients were male,
injecting drug users, and had extensive
prior experience of antiretroviral therapy.
Mean CD4 cell count before the initiation
of atazanavir therapy was 214 cells/mm3
amongst patients with decompensated
cirrhosis and 325 cells/mm3 with
compensated cirrhosis. Approximately 40%
of patients had an undetectable viral load.
Ritonavir-boosted atazanavir was taken
by 71% of patients with decompensated
cirrhosis and by 78% of those with
compensated cirrhosis. Anti-hepatitis C
treatment was taken at the same time as
atazanavir-containing HIV therapy by 14%
of those with decompensated cirrhosis and
59% of those with compensated cirrhosis.
with compensated cirrhosis, ALT levels did
not change significantly, but mean bilirubin
increased from a baseline of 1.7mg/dl to a
mean of 2.4mg/ml, a statistically significant
change (p = 0.035).
“In this retrospective cohort of patients with
either compensated or decompensated liver
cirrhosis, atazanavir boosted or unboosted
has been safe and well tolerated”, comment
the investigators, who add, “the efficacy of
atazanavir in cirrhotic patients is high, even
in this highly pre-treated group of patients.”
Reference
Hermida JM et al. Efficacy and safety of
atazanavir in HIV-infected patients with liver
cirrhosis. Fourth International AIDS Society
Conference on HIV Pathogenesis, Treatment
and Prevention, abstract MOPEB060,
Sydney, 2007.
At baseline, 71% of those with
decompensated cirrhosis had significantly
elevated ALTs (above 40 IU/ml), as did
90% of those with compensated cirrhosis.
Total bilirubin above 1.2mg/dl was
present at baseline in 57% of those with
decompensated cirrhosis and 59% of those
with compensated cirrhosis.
After a year of treatment with boosted
or unboosted atazanavir the number of
patients with decompensated cirrhosis with
a viral load below 50 copies/ml increased
to 80%, and all patients with compensated
cirrhosis achieving this outcome (p = 0.006).
Median CD4 cell count increased to a
median of 450 cells/mm3 amongst patients
with decompensated cirrhosis and to a
median of 220 cells/mm3 amongst those
with compensated cirrhosis. These increases
were statistically significant (p = 0.04).
There were no significant changes in either
ALT levels or bilirubin amongst patients with
decompensated cirrhosis. Amongst patients
For further news updates and
information on HIV & AIDS please visit
www.aidsmap.com
for hiv information
The African Eye Voice
11
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TREATMENT
Lipodystrophy
by Dr. Nneka Nwokolo, Consultant in HIV and GU Medicine
The term “lipodystrophy” refers to changes in the way that fat is distributed in the body,
often causing a change in the shape of the body. There are two types of lipodystrophy:
lipohypertrophy (or fat accumulation), in which there is increased deposition of fat in
certain areas and lipoatrophy (or fat wasting) in which fat is lost from certain areas. The
changes in body shape may be accompanied by metabolic changes such as abnormalities
in blood lipids (blood fats, such as cholesterol and triglycerides) and blood glucose (blood
sugar).
People with lipohypertrophy may notice an
increase in the size of their abdomen (belly)
or breasts, or in the area between the neck
and shoulders (“buffalo hump”). Lipoatrophy
often results in loss of fat from the face,
limbs and buttocks. Fat loss from the limbs
may cause the veins in these areas to show
up more.
Although lipodystrophy is most associated
with HIV, it may also occur in other medical
conditions. This article will focus only on HIVrelated lipodystrophy.
What causes lipodystrophy?
The causes of lipodystrophy are not
completely understood and it is not clear
how common it is. Some studies give figures
of about 15% but others suggest that it
might occur in up to 50% of HIV-positive
people. There are many factors associated
with the development of this condition, in
particular, the use of certain anti-retroviral
drugs. However, lipodystrophy may also
occur in HIV-positive people who have
never been on treatment, suggesting that
HIV-infection itself may be a risk factor. Of
interest, a study published in AIDS last year
suggested that some people might have
genes that make them more likely to develop
lipodystrophy.
What drugs are associated with
lipodystrophy?
Lipoatrophy appears to be mainly associated
with thymidine analogue nucleoside reverse
transcriptase inhibitors (NRTIs) such as d4T
(stavudine) and AZT (zidovudine). D4T is
more likely to cause lipoatrophy than AZT.
D4T and AZT cause lipoatrophy by interfering
with the way that fat cells are produced.
They do this by damaging mitochondria
which are the energy producing parts of
cells.
Other NRTIs such as 3TC (lamivudine),
abacavir and tenofovir do not appear to
cause lipodystrophy. It is not clear whether
DDI (didanosine) causes it. The risk of
October - December 2007
lipoatrophy may be reduced by avoiding the
use d4T and AZT.
Lipohypertophy appears to be associated
mainly with the protease inhibitor class
of antiretroviral drugs. It is not yet clear
whether atazanavir, a newer protease
inhibitor with fewer effects on blood fats is
also associated with this condition. People
using combination with NNRTIs have also
reported lipodystrophy as a side effect,
including fat accumulation.
What about the metabolic effects?
People with lipodystrophy may also have
raised blood levels of cholesterol and
triglycerides. Raised cholesterol and
triglyceride levels may increase the risk of
heart disease, particularly if a person also
smokes. Individuals may also develop insulin
resistance leading to problems with they way
that their bodies handle glucose (sugar),
increasing the risk of diabetes.
However, some people may have these
lipid and glucose abnormalities even if
they do not have the physical changes of
lipodystrophy. Most HIV clinics test regularly
for these blood test abnormalities as part of
routine HIV monitoring.
How do I know if I have lipodystrophy?
Some people notice a change in their
appearance over time; other people
may be told by someone else that they
look different. Mild lipodystrophy can be
difficult to detect. It may be helpful to take
photographs of yourself over time to provide
a record of any changes that might be
occurring.
There are various measurement and scans
that can be used to identify and monitor
lipodystrophy. These include DEXA and MRI
scans which are special X-rays that look
at the quantity of fat within the abdominal
cavity. Limb fat can be measured by using
instruments called calipers. If you are
concerned about lipodystrophy, you should
discuss it with your doctor.
How can lipodystrophy be treated?
It is important if possible to avoid using
drugs that cause lipodystrophy in the first
place. This is one reason for using nonnucleoside reverse transcriptase inhibitors
(NNRTIs) such as efavirenz and nevirapine
rather than protease inhibitors as first line
therapy. However, interestingly the recently
published ACTG 5142 study comparing
efavirenz with the protease inhibitor Kaletra
showed a higher incidence of lipoatrophy in
the efavirenz group than the Kaletra group.
The reason for this is not clear, but it may be
that Kaletra in some way protects against
the lipoatrophy caused by the NRTIs.
It is also important to note that sometimes
there may not be much choice as to what
anti-retroviral drugs may be used, for
example if a person has a resistant virus.
Once lipodystrophy is established, it is
difficult to reverse.
Some studies have looked at the effect of
switching away from d4T and AZT to drugs
such as tenofovir and abacavir. These have
shown some effect if switching occurs early,
however, this is generally replacing fat to
arms and legs rather than the face, and it
usually takes a long time (sometimes years)
before an improvement is noticed.
Lipoatrophy may be helped by cosmetic
procedures such as injections of various
compounds that act as fillers to replace
lost fats (e.g. Bio-Alcamid or silicone), or
that encourage the growth of collagen (e.g.
New-Fill). New-Fill is available to all patients
in London on the NHS (i.e. free, as with HIV
medications) if they have lost fat in the face
as a result of HIV treatment.
It is also possible in some cases for fat to be
transferred from other parts of the body to
replace lost fat. These procedures may not
be permanent and may need to be repeated.
The African Eye Voice
13
TREATMENT
Lipohypertrophy
Studies are being done to investigate
the use of growth hormone in reducing
abdominal fat. Fat deposits such as the socalled “buffalo hump” in the area between
the neck and shoulders may be removed by
liposuction. However, the fat deposits may
return.
Liposuction is generally not helpful for
abdominal fat accumulation because this fat
tends to be within the abdominal cavity and
around the internal organs, not under the
skin. Switching from a protease inhibitor to
an NNRTI may be helpful, although studies
have not conclusively shown this.
Several studies have also demonstrated that
regular physical exercise may be beneficial
in preventing or controlling lipodystrophy.
Exercise may also help control metabolic
effects such as insulin resistance and
diabetes.
Dr. Nneka Nwokolo
Consultant in HIV and GU Medicine
The Victoria Clinic
Chelsea and Westminster Hospital NHS
Foundation Trust
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The African Eye Voice
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October - December 2007
FEATURE
Development of a webbased integrated
HIV Care Pathway
by Jon Palmer
Commissioning and Development Officer (Older People), London Borough of Sutton
HIV services in Sutton and Merton have
agreed an integrated care pathway to
improve the ways those affected are helped.
The purpose of the pathway is:
• To show the stages of treatment for
people with HIV.
• To improve their treatment and care and
provide better coordinated services.
The pathway is available on the Internet for
service users as well as specialist and non
specialist staff. People can find out what
health, voluntary and social care services
are available in Sutton and Merton.
found it useful to learn in more detail
what the different services did.
• The second session looked at any
changes or improvements that could be
made to the current arrangements to
simplify the patient’s journey through
the care system and make sure that
people receive a consistent response.
Service users and their representative
organisations were consulted about the
pathway.
• The final session confirmed the pathway
and each service agreed to adopt it in
their workplace. The pathway was then
rolled out across the boroughs.
You can see a copy of the care pathway at:
www.sutton.gov.uk/socialhealth/hivaids
For more information contact Jon Palmer,
Commissioning and Development Officer,
London Borough of Sutton 020 8770 4980.
[email protected]
Full Version
Links can be followed on the pathway to
find detailed information about different
services. By using the internet information
can be shared widely and updated quickly.
The pathway responds to the changing
needs of people living with HIV, changes
in treatments and types of support and
provides a better-coordinated service.
It gives people with HIV a straightforward
way of understanding what services are
available and how they fit together. The aim
is to fit the care around the needs of the
service user, rather than fit the service user
into existing services.
The development of the pathway brought
together some of the area’s key agencies,
with health, social services and the
community and voluntary sector all working
together.
Short
Version
Members of the group included clinicians
from the genito-urinary medical service;
the community nurse specialist; advice
organisations; specialist care managers and
an African community involvement group.
Three sessions were held:
• The first mapped the existing patient
pathway. People attending the session
October - December 2007
The African Eye Voice
15
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SEXUAL HEALTH
Manners Maketh the
Man?
by Jack Summerside
Increasing numbers of HIV positive African women are now prepared to stand up and
be counted. We seem them take an active role in civil society, and publicly share there
stories for others to gain strength from. But where are the HIV positive African men?
Jack Summerside takes a light-hearted and personal look at some of the conflicting
demands and pressures on African men today, in particular those living with HIV and men
who have sex with men.
What does it mean to be a man at the
beginning of the 21st Century? That’s
something that consciously or not, all men
have been struggling with for quite some
time. It doesn’t just date from the start of
the new millennium, or even back to the
swinging sixties and the growing feminist
movements of the 1970s. You could date it
back to the fight for women’s right to vote in
the beginning of the last century. For African
men, it goes back further: the role of men
in many African cultures and societies was
radically changed by the European colonial
influences dating back hundreds of years.
And for men making the adjustment from
their role in their countries of origin to
learning the tricks of getting by in European
societies, the struggle can be even greater.
Back home, the masculine role is head of
the family, bringing home the daily bread
and expecting the dinner on the table and
the woman on the bed when we want.
The greater freedom of women can be a
challenge to that sense of masculinity, and
that can be a dent to the libido that little
blue pills can’t fix.
We hear a lot about men being the ‘vectors’
of HIV transmission. We become infected
with HIV and then pass it on to the women
in our lives. And if only we would curb
ourselves, women would not be put at
risk. But the influences on men are many
and varied – it’s not just a question of us
behaving and keeping our zips fastened. If it
were as simple as that, it would be easy.
Men like to think we’re in charge. The
truth is, we never have been, and probably
never will. Women know they really make
the rules, and make sure men (and other
women) stick by them – either directly,
or more usually by subtle and persistent
methods. It works better to let us carry on
thinking we’re in charge!
18
The African Eye Voice
Of course, men often have the edge in terms
of physical strength – although I wouldn’t
like to rate my chances in a fist-fight with
most of the African women I know. And men
often hold the reins of power in terms of
earning ability and freedom of movement in
many societies. But it is around the kitchen
table that the focus of power revolves,
especially in extended families.
James “I was diagnosed HIV positive in
2005. I took a test after we got married. My
wife was diagnosed when she was pregnant
with our first child and after hesitating for
quite a while, I took a test too. We never
discussed where it came from, whether she
or I might have given it too each other. That
would be just too painful and we don’t see
what benefit it would bring to know.”
That’s not just true of African societies, in
works in Britain too. Think of Pauline Fowler
(Rest In Peace) in EastEnders. I’ve had
many a conversation with African friends
who tell me about the importance of family
in African culture and how different that
is from what they’ve seen of white British
people’s relationships with family. The truth
is, British families are much the same, once
you look past the middle-class and (forgive
me) slightly cold manners of people in the
capital and the South of England.
JS “And the other woman in your life?”
James’s
story
I spoke with James - not his real name, for
reasons that will be obvious.
JS “Describe your life to me a little”
James “I grew up in a small village in Africa,
and came to England five years ago. I have
a wife of three years and two children. I also
keep a ‘little house’ with a woman I met a
year ago. They know about each other, of
course. In my case, my wife didn’t want to
be having sex after our second child – it
was a difficult birth and she doesn’t want
another.”
JS “And what about HIV?”
James “She doesn’t know I’m positive. I feel
terrible about not telling her but to be honest
I am afraid she will run away. I wanted to tell
her at first, but the moment never seemed
right – and the more time goes on the
harder it is. She will ask why I didn’t tell her
before.”
JS “What about condoms?”
James “I’ve always used condoms with
(names his ‘mistress’). I am so glad I have,
as it would have made it so much more
complicated. My wife insists on them at
home, but we don’t have much of a sex life.”
JS “And what does ‘being a man’ mean to
you?
James “It’s hard finding how you are
supposed to be in English culture. I keep it
secret that I have a little house to my English
friends as I don’t think they’d understand.
With other African men, I can talk about that
– but I never mention HIV. I just don’t feel
comfortable with other African men knowing
I’m HIV positive. I fear they’ll ask how
come I caught it? And they might doubt my
manhood. Most of my African men friends
are from church as well, and we just never
talk about such things, except for it being
such a big problem back home. It’s funny
we never say the words, but talk around the
subject”
October - December 2007
FEATURE
SEXUAL
HEALTH
William’s
story
William also asked for his real name to
be changed, again for reasons that will be
obvious.
don’t really talk about HIV with them, and try
hard to always use condoms. But you know
some men ask for sex without them? I find
that curious. Surely they must know about
HIV and protecting themselves?
JS “What about other African men?”
JS “Tell me about your life”
William “I have been in England for three
years now. I have a girlfriend, but also
have sex with men. I haven’t really had any
relationships with men, though I have had a
few men that I’ve seen for a few months or
so. I’m HIV positive too. I don’t know how
long I’ve had it before I found out last year,
and I do not know whether I might have got it
back home or here in England”
JS “Were you having sex with men back
home, before you came to England?”
William “Yes, but not many times. It is all
very secretive back home and nobody ever
talks about it. I suppose in some ways
one of the reasons I wanted to come away
was because of that. Also, my mother and
my sisters kept asking about me settling
down with a girl – especially as I got into my
twenties. I had a few girlfriends, but it never
seemed quite right.”
JS “What about the men you’ve met here?
William “It has been strange in some ways.
Sometimes the men I’ve met seem to have
been after me just because I am black.
Others seem to shy away because of that,
or maybe it is just because they don’t fancy
me! I don’t know it is hard to tell (laughs). I
October - December 2007
William “For sex? No, my God no. When I
see other black men who I think might be
African, when I go to gay clubs or places, we
never look each other in the eye. They keep
away from me, and I keep away from them. I
would never talk with another African man in
such places – but I have seen them.”
JS “And do other African men know you have
sex with other men?”
William “No, such things are never talked
about. It’s not considered a manly thing to
do, and I’d be afraid that it might get back to
my family back home, or to my girlfriend.
JS “So your girlfriend doesn’t know about
you having sex with men? Does she know
you are HIV positive?
William “No she knows nothing about either.
How could I tell her such things? It’s not
like it is for you white gay men. I don’t feel
comfortable about it, but what can I do? I
feel a bit trapped by the situation but do not
know how I can change things.”
Both James and William are trying to live
up to other people’s expectations of what
it means to be a man. That can be hard
as sometimes the subtle or overt demands
that are made on you can be in direct
conflict. Mother, sisters, aunts expect
certain things; Church or Mosque tells us
another; other male friends expect us to
behave in certain ways too.
And for men like William, there is an extra
layer. The expectations of other gay men
might be to treat you as an exotic novelty,
or something to be avoided.
What strikes me most is how many
secrets men have to keep in order to keep
everyone happy. So what advice can I give
on how to be a man in the 21st Century?
Well, its easy for me to say as a white gay
man who has had many years of getting
used to living with HIV to say ‘Stand up
and be counted’, but of course it’s not
that simple. But what I can recommend
is a quote from the poet Max Ehrmann’s
Desiderata (Latin for ‘things to be desired’):
“As far as possible, without surrender, be
on good terms with all persons.”
Secrecy breeds secrecy, and secrecy
can also be deceit. It will take time and
the actions of a few brave souls to make
changes – bit by bit – to open doors. Are
you one of them?
JS “And do you use condoms with her?”
William “Yes I always try. She has
sometimes said ‘Why do we need these?”
and I make some excuse about not earning
enough yet to risk children.”
Jack Summerside is a freelance writer,
facilitator, trainer and project manager.
[email protected]
Writer image courtesy of
www.TheDualities.com
The African Eye Voice
19
CHILDREN’S CORNER
HIV Care and support
to young people
Living With HIV
Edited by Lesley Naylor
For CWAC, the year it all began was 1992. Any mention of the word HIV or AIDS continued
to cause wave after wave of controversy as the bewildered public sought to blame,
stereotype and run away as fast as they could, from anything associated with this as yet
little understood virus.
Somewhere between the ongoing media
outcries and medical professionals
struggling to come to terms with the reality,
a small but growing number of children
were being born HIV positive. These babies
were viewed as having few prospects and
no future back then. This was the first
generation to be born with the virus. Medical
science knew nothing about coping with
them. Any drug therapy had been developed
based on data from adult patients. There
were next to no units for families – and
this was, more than almost any other, a
disease that was going to infect and affect
whole families. Some people even took
the sprightly view that these children had
no right to live. Others, who were capable
of showing some compassion were of the
belief that HIV in children was different
somehow, the inference being that children
are innocent – as if adults were somehow
guilty of a crime if they themselves became
infected.
To top it all, the adored Freddie Mercury
publicly announced that he had AIDS and
then died the day after. People were gob
smacked. I was only eighteen years old, had
just moved to London and copied all my
brother’s music albums for myself, Queen
included. I remember thinking, ‘well at least
he was loved; people will feel sad and mourn
him. If people can feel sad for Freddie then
they’ll learn to apply understanding to all the
others living with HIV surely.’ I have always
been hopelessly optimistic by nature!
Meanwhile, a tiny group of parents
and health professionals at St. Mary’s
Hospital had decided enough was enough.
Something had to be done for those children
living in the shadow of HIV: those faced with
the terrifying prospect of losing their parents,
their friends and their own lives; those who
were forced to keep their health condition
20
The African Eye Voice
a secret until the day they were expected to
die. Children who did disclose their status
were routinely shunned, rejected and
excluded by the communities in which they
lived. Isolation and shame were the norm
and violence was not uncommon.
Rebecca Handel, whose daughter Bonnie
was being cared for at St Mary’s, met Jo
Dodge, the Family Coordinator to discuss the
shortage in existing provision of services for
children. Together with the paediatric team
they decided to start an organisation that
could respond to the practical, emotional
and educational requirements of children,
their families and the wider public in
general. Rebecca was white, heterosexual,
middle-class and Jewish so she did not fit
neatly into the usual HIV-positive stereotypes
either. Whilst HIV was largely touted as
a ‘gay’ or ‘black’ scourge that suitably
punished to death those people who partook
in same sex relationships and those whose
skin was simply the wrong colour, she
brought home the truth that in actual fact,
HIV simply happened to mothers, fathers,
daughters, sons, brothers and sisters.
The existence of the Handel family flew
in the face of public perception. Bonnie,
struggling courageously with ever failing
health, was overjoyed when the late Princess
Diana started writing letters of hope,
empowerment and encouragement to her.
The essence of CWAC was born.
A committee was formed in 1992. Bonnie,
then aged twelve, died in St Mary’s
Hospital the following December. The
charity continued to run from the hospital
for some eighteen months, becoming
officially registered in 1993. It was led by
extraordinary people who were already
in full time jobs or ill and working from a
bed, determined to keep the charity afloat.
Rebecca and Jo had dreams on a scale to
CWAC Education Officer Amena Zaman.
Amena facilitates work experience at the
charity ensuring the views of young people
can be expressed freely and without
prejudice.
match the kind of dreams that Martin Luther
King had. And why dream, if not to turn that
burning desire into reality?
Foremost in her mind, Rebecca knew the
charity would have to raise enough money
to hire a full time Administrator, someone
who would be able to carry on the work after
her death and establish a vital source of
services for children.
In 1994 CWAC recruited its first ever
Administrator, David Simpson. It all sounds
so straightforward but at the time a
recruitment advert, if being honest, should
have read something like: ‘Applications
desperately sought for the single post of
Press Officer, Education Officer, Fundraising
Co-ordinator, Services Co-ordinator,
Bookkeeper, Office hunter, Company
Secretary and Volunteers Co-ordinator.
Salary just enough to get by on.’ Needless to
say the right person was recruited. Rebecca
Handel, reassured by the fledgling team that
had been forged, died on New Year’s Day
1995.
All the twelve hour work days, the evening
and weekend work that followed David’s
recruitment, and numerous others since,
as well as a host of diverse volunteers and
management committee members, have
been key to CWAC’s development, without
whose support such immense growth simply
would not have happened. The times may
have changed but all these people, both
adults and children are never far from the
thoughts of those associated with CWAC
today.
It is with particular pleasure that I have
watched our youngest work experience
October - December 2007
“children who did
disclose their status
were routinely shunned,
rejected and excluded
by the communities in
which they lived”
CHILDREN’S CORNER
participant (aged fifteen no less) pass
through the office recently – no different to
any other boy of his age, yet somehow wise
(and talented in the art of graffiti) beyond his
years.
over the past fifteen years has been the
development of medication. I ask Mathew,
a source of relentless energy and innovative
ideas, what it was like for him fifteen years
ago.
For all the successes that CWAC has lived
through and all the children and families
that we have helped and continue to help,
somehow there are always more and more
that come to us in need of support. Children
still have to cope with grief, adoption,
fostering, poverty, prejudice, exclusion, and
the uncertainty of growing up in a world
where bouts of prolonged illness are best
kept hidden.
‘Me and my brother had to take horse
tablets… that’s what everyone used to
call them. It’s hard to get a child to take
medication on a timed schedule anyway but
to make it almost unbearable, the tablets
and syrup were absolutely disgusting in any
shape or form.’
Not that this makes a child any kind of victim
in the big bad world we all inhabit as best
we can. The word rebel is a more accurate
term to describe some young people. To
me, some are rebels in the making by
default: rebel carers; rebels that fight to
return to school, go to college or get into
university, sometimes without a parent or
a penny to their name; rebels who insist on
speaking out sometimes and who damn
the consequences even if it means getting
beaten up or excluded from school; rebels
who, poverty stricken, sometimes walk a
line too close to the criminal justice system
and need to be plucked from the waiting
jaws of youth prison. Some of these children
are more sickened by the way in which their
communities have treated them and their
families, than by having HIV in itself. So it’s
really not surprising that some children in
transition to adulthood have grown angry,
frustrated and may not naturally comply with
the strict medication regime expected of
them.
They have learnt to be masters at hiding
fear and being young, often feel patronized
and misunderstood. They all have untapped,
unlimited potential but have experienced
very little consistency in their lives. When
these children are given some of the
resources that should never have been
denied them the changes that occur are
astounding. A strong team spirit can light
a fire in the mind of a child. A laptop will
radically improve a young person’s reading,
spelling, emailing and organizing abilities in
a week. Talk of equal opportunities and their
eyes snap to attention.
Today CWAC can boast a spacious office
that benefits some 2,500 children and their
families annually but the most remarkable
development in the field of paediatric HIV
22
The African Eye Voice
He is now twenty five years old, a father, and
when he’s not at work keeping the rest of
the team (young and old) on their toes, he
can generally be found looking after his son
(who does not have HIV), playing basketball,
raving the night away on the UK club scene
or romancing his girlfriend.
I ask him how big the horse tablets were.
He demonstrates by stacking three 2 penny
coins on top of each other and shoots me
a quizzical look. ‘Imagine getting a child to
swallow or chew tablets that big every day.
They were bright orange and we were told
they were orange flavoured but they weren’t
at all. They were rank. Some kids had really
bad side effects too. And they had to go
through all that everyday and not breathe
a word about what was going on when they
were at school.’
Mathew suddenly looks as if he’s a million
miles away. ‘Our mother had died and we
were adopted. My brother died when I was
thirteen. He’d had enough of the meds
and wouldn’t take any more of the AZT or
Septrin. He was sixteen. A couple of years
after that medication improved a lot. Like
now, I can take a whole combination in a few
small pills.’ He adds thoughtfully, ‘I still hope
for the day I only have to take one tablet
though.’
By 1992, 395 children had been reported
as HIV infected. In 2007 a total of 7,243
children have been born in the UK to HIV
infected mothers. Of these, 774 have been
diagnosed with HIV infection. There have
been 1,538 diagnoses of HIV in people who
acquired the virus from their mothers and
thousands more young people who have
acquired the virus from sexual contact.
says.
‘I was guilty of my own kind of ignorance.
In the kind of world I lived in, although
announcing that you were HIV positive would
not exactly have had loved ones coating
you in chocolate and licking you all over,
neither would it have resulted in you being
ostracized, physically abused or finding
excrement pushed through your letterbox as
had happened to others. I thought it would
be easy to go out, find some families, do
some interviews and change the way the
world thought. The BBC had given me the
go-ahead to produce a documentary about
children, families and HIV/AIDS.
‘It took me 18 months to find anyone who
was brave and generous enough to talk to
me on camera. I have letters from families
and from young people who wanted so
much to speak out but who could not risk it.
I still have the letters I got from the people
who had their right to a voice taken away
from them. One young boy in particular I
remember wrote, “Having AIDS doesn’t feel
like being ill, it feels like being bad.”
Copstick isn’t the kind of person to give
up and she eventually made the program.
It was called Positive Thinking and it was
a life changing experience. ‘Working with
CWAC has been wonderful. And I feel we
have done so much good over the years. We
have poured out so much information in so
many ways and raised millions of pounds for
children experiencing immense hardship.
You would think, as the superheroes say “our
work here is done!”
Then she shakes her head in dismay. ‘It’s
not just the fact that HIV is the fastest
growing serious health condition which is
awful enough. The worst thing of all is that
I know if I made that same documentary
today, it would be just as hard to find
children and families who would feel
comfortable about going public. And it would
be just as impossible for me to guarantee
that nothing bad would happen to them.
I would love to close CWAC down with a
big 15th Anniversary bash. But we can’t
because CWAC is needed more than ever.’
She says it all really.
I talk to Kate Copstick, one of CWAC’s
founding trustees who became involved in
the hope of persuading the ‘outside’ world to
do something to dispel its ignorance and see
past its prejudices. ‘Education has always
been a cornerstone of CWAC’s work’ she
October - December 2007
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FEATURE
Cardiovascular Disease
By Andrew Balkin, Treatment Advocate
The latest phrase buzzing around the HIV arena appears to be cardiovascular disease, often simply referred to as CVD. It’s one of those
‘catch-all’ phrases encompassing anything and everything to do with heart disease, from weight and body shape, to lipid levels and blood
sugars, with a bit of diet and exercise thrown in for good measure.
In a bizarre way, we should be grateful
that we are talking about cardiovascular
disease: it has increasingly become a hot
topic because antiretrovirals are doing
their job and people are now living longer
with HIV. Where once we associated HIV
with Kaposi’s Sarcoma and pneumocystis
carinii pneumonia (better known as PCP)
and premature death, now we are looking at
conditions such as CVD which are generally
associated with older age.
Cardiovascular disease covers a multitude of
sins associated with the heart: the two main
conditions that come under the heading
of CVD are heart disease and stroke.
It’s a huge problem for the population in
general, not just people living with HIV.
One of the main problems that can lead
to cardiovascular disease is excess fat in
your body. The fat can build up, putting
extra strain on your heart and can even
cause blockages in your arteries, restricting
blood flow. It’s not something that happens
overnight, but it could be happening to
you now and you may be unaware. While
being overweight is linked to heart disease,
so too is a high cholesterol level and you
can have the latter even if you are slim: a
healthy balanced diet and regular exercise
are important whatever your size (but more
about that later).
To understand CVD, it is helpful to know why
our body needs need fat and what types
there are. Just to confuse things slightly,
fats are often referred to as lipids. So for
now we’ll call them lipids. On the whole,
lipids travel throughout your body providing
energy to cells and tissue. There are two
main types of lipids and they are cholesterol
and triglycerides. When you eat, your body
converts fats from the food into triglycerides
and cholesterol. Cholesterol is essential
for many of our body’s functions including
mental function, building healthy bones
and muscles and aiding in the digestion
process. As for triglycerides, they are also
an energy source and can be found in your
bloodstream: high levels are associated
with an increased risk of heart disease,
pancreatitis and diabetes.
there are different forms of cholesterol.
There is high-density lipoprotein (HDL)
cholesterol, also known as good cholesterol,
and then there is low-density lipoprotein
(LDL) cholesterol, also called bad
cholesterol. HDL helps remove cholesterol
from your body whereas LDL carries
cholesterol to cells. A high level of this bad
cholesterol can increase your risk of CVD.
If you could look inside your arteries, there
would be little deposits of cholesterol dotted
around. As time goes on, more and more
cholesterol, red blood cells and fibrous
tissue can build up on these deposits,
making them bigger and bigger until they
eventual block the artery. While all this is
going on, your HDL (good) cholesterol is
trying to soak up some of the deposit and
remove it, limiting the damage being caused.
When it comes to CVD, there are many
things you can do to prevent it and there are
a few factors that are beyond your control.
Starting with the bad news first, a family
history of CVD could put you at higher risk.
Genetics also play a part, because some
people are genetically predisposed to some
forms of heart disease. Age is also a factor
and it probably comes as no surprise that
the older you are, the greater your risk. The
other factor beyond your control is gender:
men get the short straw here because
they have a generally greater risk of heart
disease than women.
That’s the bad news out of the way, so here
is the good news. There are plenty of things
you can do to reduce your risk of CVD. The
biggest one is probably quitting smoking.
Cutting down may help, but specialists will
tell you it’s not enough: you need to cut it
out!
Obesity is also a major factor that can
be sorted out and links in with diet and
exercise. The food you eat has a direct
bearing on your blood lipid levels. Eating
a poor, unhealthy diet (and that includes
fast food, takeaways and ready meals) can
lead to high levels of LDL (bad) cholesterol
and triglycerides. Reducing your intake of
sugar, alcohol and sweets can help keep
your triglyceride levels normal: so too can
eating more oily fish. To lower your LDL (bad)
cholesterol levels, you need to reduce your
fat (including saturated fat) intake. This may
also raise your HDL (good) cholesterol levels,
as too can maintaining a healthy weight.
Eating five portions of fruit and vegetables
a day will also make a positive difference
to your lipid levels. Before making drastic
changes to your eating habits, you should
consult your specialist or ask for a referral to
a dietitian.
Now the one factor that is guaranteed to
raise a moan is exercise. People think they
haven’t got time to get to the gym or don’t
have the energy or motivation to take up
sports. You don’t need to. Exercise is good
Just to make things a bit more confusing,
24
The African Eye Voice
October - December 2007
for you and can reduce the risk of heart
disease, but remember, there are many
forms of exercise. If you walk to the shops,
the station or to work, try doing it a bit
quicker: brisk walks are a very good form of
exercise. If you have a dog, then take it for
walks and try walking fast with it or running
around and playing with it. It’s all exercise
and it all counts. If you use the bus, get off
a couple of stops early and walk the rest of
the way. If you have a bike, then try cycling
instead of using transport sometimes. If you
do these activities at least a few times a
week for 20 minutes or more each time, they
all count and they are all very good forms
of exercise. However, if you do want to go to
the gym, swim regularly or take up tennis or
badminton that’s great, but it’s not essential.
Lecture over, I promise.
There are just a few more points to cover.
Firstly, if you attend an HIV clinic you can
request that your lipid levels and weight
are measured and monitored. This will help
you keep track of what is going on with your
body. Secondly, some antiretrovirals have
less impact on your lipid levels than others.
Your specialist can explain this to you and
together you can weigh up your options. It is
also worth noting that HIV itself may have an
impact on your lipid levels.
That just about wraps it up. So next time you
hear the buzzwords ‘cardiovascular disease’
mentioned, you will know exactly what
people are on about and you can be ahead
of the game and doing something about it
Events
Manchester
George House Trust
9 October 2007
Treatment Talk
with The African Eye Trust
23 October 2007
African Fashion Show
6 November 2007 Manchester Library
20 November 2007 Manchester Pride
4 December 2007 Service Review
London UKCAB
2 November 2007
for more information
visit www.i-base.org
London African Treatment
Advocates Training
24 October 2007
22 November 2007 for more information visit
www.africaneyetrust.org.uk
London BHIVA Conference
11-12 October 07
for more information visit
www.bhiva.org
“exercise is good
for you and can
reduce the risk of
heart disease, but
remember, there
are many forms of
exercise”
LETTERS TO THE EDITOR
Letters to the Editor
The Editor,
Thanks for writing useful HIV treatment focused
articles. We needed such articles in the past but
there were none. Please keep up the quality of
your work. I saw the first copies of the African eye
Voice, but the last publication was a true treatment
focused magazine. Our lives as people living with
HIV will greatly improve as we get the information
we need about our health via the African Eye Voice.
Editor, sorry for writing so much, but I think this is a
good HIV publication we have in the UK, do appeal
to us if you ever find any difficult in producing it.
Doctor of ours, as reader we are willing to help.
Dear Editor.
Could you please make the African Eye Voice a bimonthly publication as we miss it so much. Also, we
love your website. It gives us up-to-date information.
We love the African Eye Voice. Please get us
boxes at our clinics. My friend got my copy, which
I had just got from the clinic and had to return
as the nurse told me that the copy left was for
other patients to read while waiting for their clinic
appointments. Thanks to the African Eye Trust for
publishing such a wonderful treatment magazine.
I look forward seeing the next publication so I will
keep an eye on your web for the current copies.
Joan Kenyusa, Patient in a London Hospital
Marry Gwamba, Your regular reader
Dear Editor,
The African Eye Voice is a fantastic magazine
thanks for bringing us the treatment news. When
we read we see new medication coming up we
get more energy to live with the virus. Also, the
guidance you give regarding our treatments is very
very good. Editor keep up the good job. But please,
can we have links to relationships as it is a major
issue for us people living with HIV.
Vivian Oluto , Reader, The African Eye Voice
Dear Editor,
Thanks for getting the magazine close to us at
the clinics. When I read Mr. Kyazze’s article I was
extremely happy because the article was true and
interesting. I like Kyazze’s articles. Thanks the
African Eye Voice. You care for people living with
HIV. This magazine is our voice. Editor, can we
send our views on the services we get from the HIV
charities and HIV clinics to you? Bye for now.
Alex, London
The Editor,
Thanks for making our dreams come true. My
friend and I have, for the last 20 years, wanted to
have such a magazine, but things were not easy
so we failed to start one. We are proud to see such
a magazine now. We all need to support it as HIV
Treatment is a very important aspect in our lives
as people living with HIV. Thanks to the African Eye
voice and all the production team. Long live you
guys.
Harriet, Your reader since the first copy
The Editor,
This is the only HIV magazine we have in the UK
for now. Thanks for keeping us informed of what
is happening in our HIV life. We can all see this is
special magazine. It reports sensible information,
reader comments and views, treatment question
and answers. It keeps me busy and I have learnt a
lot from the African Eye Voice . You are not a voice
for Africans. You are a voice for people living with
HIV in the UK. Please change the name.
I am happy to associate myself with this magazine
as a person living with HIV and on medication for
over 8 years
Paul, The African Eye Voice reader, Cardiff
The Editor,
The African Eye Voice is a tool for both patients and
us as workers in the HIV sector. During my breaks, I
always get a copy and read through it. At times even
when I am waiting for the next patient this is the
first magazine that I have ever recommended for
patients to take home and they have taken copies
with a smile. The magazine looks great well done!
Staff nurse at one of the London clinic
Why keep a
treatment
history?
Whether newly diagnosed or positive for a
long time, keeping a short record of your
treatment history can help in many ways:
• it can help you understand your health
and treatment
• it can help if your doctor changes at your
clinic
• it can help if you speak to other
healthcare workers or to a treatment
phone line for advice
• it can help if you ever change hospitals
or clinics, or if you want a second
opinion, when on holiday or abroad, or if
you move to another country.
Any treatment choice for your future care
is closely linked to your previous treatment
26
The African Eye Voice
history.
This includes results from blood tests like
the CD4 count, viral load and resistance
tests, as well as the history of drugs you
have used and your reasons for changing
them. As treatment improves you could
need this record for 20 years or more - and
whether new treatments work may depend
on previous treatment.
This record is important. If you change clinic,
you should ask for your medical records
to be forwarded, but this does not always
happen - make sure that you have a record
of your GUM or clinic number.
The booklet, produced by HIV i-Base, known
as ‘treatment passport’, will help provide a
useful record in all these situations.
The booklet has sections that can be filled
either by you or with the help of your medical
professional. Those include the hospitals
and clinics that you have attended and the
type of specialists you have been referred
to; CD4 count, CD4% and viral load (with a
short explanation of what all these mean);
other tests that you may have had and their
main results and time when you had them;
antiretroviral treatment history with the
exact combination, time started and time
stopped, as well as the reason for stopping;
a chart where you can plot the viral load
and CD4 count results; tables for the side
effects and possible allergies that you
may have encountered during the course
of your treatment and also any history of
opportunistic infections or other conditions;
finally there is an immunisation record table
and a table for your possible participation
in clinical trials. Your doctor can provide you
with details to help fill in this booklet, but it
does not replace your medical notes.
Like all i-Base booklets, the treatment
passports are available free as single
copies or bulk (within the UK). You
can order them by sending an email to
[email protected], by calling
08088006013 or on the website: http://
www.i-base.info/forms/order.php
October - December 2007
TREATMENT
Personal Voices 2007
Proper sex and relationship education for all young people, free HIV treatment for everyone living in the UK. Primary Care
Trusts should spend the money on sexual health that they ought to.
Lisa Power, Head of Policy and Public Affairs, THT
Stigma and discrimination are still issues across sectors. We all need to take part in the struggle.
Ejijah Amooti, HIV Treatment Advocate
People with HIV have the same needs and wants as those without HIV. Unfortunately, sometimes positive people have to work
harder to get those things.
Thandi Haruperi, Founding Director RestorEgo
More African women are getting tested for HIV than men in the UK. Doctors and those working in the HIV field are trying to
get African men engaged in the HIV debate and tested for the virus. THT, NAHIP , The African Eye Trust and other African-led
agencies will be working together to find the best ways to engage with African men.
Elias Phiri, Sector Development Officer, Terrence Higgins Trust
The UK theme for World AIDS Day 2007 is ‘Understanding through Communication’ and we are calling on everyone to help
us break the silence around HIV on 1 December. This theme ties in with this year’s international theme for World AIDS Day:
“Leadership”, as by asking questions, listening to others and sharing experiences individuals can take the lead in breaking
down the ignorance and fear around HIV.
Deborah Jack, Chief Executive, National AIDS Trust
Adherence to medication, could be the difference between life and death.
Charles Kyazze, HIV Campaigner
Naz Project London (NPL) provides sexual health and HIV
prevention and support services to targeted Black and Minority
Ethnic (BME) communities in London.
Part Time African MSM Sexual Health Worker
NPL aims to educate and empower communities to face up to
the challenges of sexual health and the AIDS pandemic, and to
mobilise the support networks that exist for people living with
HIV/AIDS.
We have an exciting new vacancy for a part time African MSM
Sexual Health Worker (3 days a week - 21 hours) to develop and
run a culturally competent sexual health promotion and STI/HIV
prevention, facilitation, referral and information service for
African MSM in Newham and Tower Hamlets.
Knowledge of Sexual Health issues in an African MSM (men who
have sex with men) context is essential.
Salary: £22,500 pro rata (£13,500 per annum based on 3 days
a week)
To apply, please email Laurent Burel at [email protected],
call on 020 8741 1879, or visit our website www.naz.org.uk
Closing date 8th October 2007
October - December 2007
“Facilitating Change… Enabling people to find their own
solutions”
Working with Emily-Oden Oasis
HIV and AIDS
We live with it, we learn from it and we teach from that
experience …. areas include:1 to 1 Peer Emotional Support
Mentoring & Coaching
Group Peer Support
HIV Awareness
HIV Treatments
HIV and Mental health
Sexual Health
Health and well-being
Disclosure and Relationships
Self Esteem and Confidence
Skills Building
Personal Development
HIV Awareness for:Schools
Colleges and Universities
Medical Students
Employers
All professionals working with HIV
Faith Communities
Stress Management
Communication
Team Building
Train The Trainer
Training – Speaking – Facilitation - Mentoring
Learning from experience
Tel: 0208 657 0555 | Mobile: 0790 491 0894/0790 442 5849
Fax: 0208 657 9451
www.restorego.com | [email protected]
The African Eye Voice
27
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Email [email protected] Website: www.positiveeast.org.uk (September 2007)
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Tel: 020 8664 3600
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TREATMENT
What is British HIV Association
By Godwin Yomi Adegbite, MD., Lead Person, Advocates Project TAET
Dear African Eye Voice, I have been at BHIVA meetings but I don’t know what is BHIVA for example what they do and others details.
Thanks for your Question. Bhiva stands for
British HIV Association which is the leading
UK professional association representing
professionals in HIV care. Now 13 years old,
it is a well-established organisation which
is committed to providing excellence in the
care of those living with and affected by
HIV. It acts as a national advisory body to
professions and other organisations on all
aspects of HIV care. BHIVA also provides
a national platform for HIV care and
contributes representatives for international,
national and local committees dealing
with HIV care. In addition, BHIVA works to
promote undergraduate, postgraduate and
continuing medical education within HIV
care.
BHIVA holds two conferences each year;
the annual conference is held in the spring,
traditionally in April and the BHIVA autumn
conference is held in October in London.
The annual conference venue rotates each
year to try and give all members across
the UK the best opportunity to attend. The
CPD-registered conferences attract a broad
spectrum of participants from experienced
HIV specialists to those still in training and
encourages UK research to be presented,
as well as inviting eminent international
speakers to present state of the art data. For
the first time BHIVA will have a communitydirected plenary at its autumn conference.
The BHIVA Executive Committee oversees
the work of the association, which is run
by the four subcommittees on Audit and
Standards, Conferences, Education and
Scientific and Guidelines. The community
is represented at all these committees by
the following dedicated officials, Current
representatives include:
Executive Committee:
Gus Cairns
Scientific and Education Committee:
Elijah Amooti
Audit & Standards Sub-Committee:
Gus Cairns
Conferences Subcommittee:
Simon Mwendapole, Gus Cairns
Hepatitis Sub-Committee:
Carmen Tarrades, Craig Deacon-Adams
Side-effects Sub-Committee:
Matt Williams
Guidelines Writing Group:
Edwin J Bernard
Sexual Health/Treatment Guidelines:
Edwin J Bernard, Polly Clayden
HIV/hepatitis B coinfection guidelines:
Paul Bateman
HIV/hepatitis C coinfection guidelines:
Paul Bateman
Pregnancy Guidelines:
Polly Clayden
Malignancy Guidelines:
Simon Collins
TB Coinfection Guidelines:
Simon Collins
Medical Research Centre (MRC) and
other studies:
UK Resistance Database Project:
TBC
PENTA (Paediatric Network):
Polly Clayden
Oxford University Vaccine Study:
Svilen Konov
Steering Committee Optima Trial:
Simon Collins
To set achievable targets and indicators
of care, the BHIVA Audit and Standards
Subcommittee conducts annual audits.
To help promote and monitor high
standards of care, BHIVA has published
guidelines covering HIV and hepatitis B
and C co-infection; immunisation; kidney
transplantation; liver transplantation;
pregnancy; TB co-infection and Treatment
Guidelines. Guidelines under development
include HIV and Malignancy; Opportunistic
Infections (with BIS); Pregnancy (with CHIVA);
Reproductive and Sexual Health and Toxicity.
Last year BHIVA also issued its Standards
for Clinical Care, which aim to ensure that all
patients with HIV in the UK receive the same
high standard of care regardless of their
location and medical needs.
The current membership of the association
is over 800 across a wide range of
healthcare professionals and other HIV
healthcare workers. Membership benefits
include subscription to the key journal
HIV Medicine, BHIVA Newsletter, BHIVA
National Audit Report and BHIVA Treatment
Guidelines. Anyone can join BHIVA for a
fee; you don’t have to be a healthcare
professional. For more details on the
benefits of membership and how join just
take a minute and vist www.bhiva.org.
BHIVA is affiliated with the Children’s HIV
Association of UK and Ireland (CHIVA),
Dieticians in HIV and AIDS (DHIVA), the
HIV Pharmacy Association (HIVPA) and the
National HIV Nurses Association (NHIVNA).
BHIVA has developed important links with
other relevant organisations, encouraging
exchange of information between national
and international centres, such as the
International AIDS Society (IAS), the
European AIDS Clinical Society (EACS) and
the Medical Research Council (MRC).
For more information please do vist
www.bhiva.org
Opinions
Dear Readers please send us
your opinions on all HIV related
issues and we will publish them
in the our next issue.
The African Eye Voice is your
voice, the voice for all people
living with HIV/AIDS.
October - December 2007
“I have seen the Pan London tender
consultation process has started. I haven’t
seen even a single African organisation
come up with any contribution towards those
tenders while many other organisations
have expressed their intentions to the
commissioners. Yes, it is true AHPN and one
African led organisation are contributing
to the process, but I think most African
organisations come out at the last minute of
the general process. Should we change?”
“I think that sex and relationships should be
focused on in this magazine. People need
partners in their lives.”
“I think people involved in HIV related work
need to work together rather than working
in isolation. Partnership work can make a
major impact on HIV services.”
The African Eye Voice
29
The African Eye Trust
Providing HIV Treatment information to
African Communities and awareness about
other health issues in the UK and worldwide
through local community organisations
• The African Eye Voice
Treatment Publication
• Global Poster Project
• UK African HIV Treatment
Advocates Project
• UK National Treatment
Information Workshop
Programme
If you would like to work in
partnership with us please email
[email protected]
The African Eye Trust
Suite107, Maddison House
226 High Street, London, England CR9 1DF
Email: [email protected]
Website: www.africaneyetrust.org.uk
Registered Number: 06124839
Distribution Centre Order Form
If you would like to become a distribution point for the African Eye Voice please complete the form below and post it to us.
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Address:
Postcode:
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Telephone:
No of copies requested:
Please return to:
African Eye Voice Suite 107, Maddison House, 226 High Street, London, England CR9 1DF
or email [email protected]
DIRECTORY
Directory
Do You Need More Information about HIV Services
i-Base Treatment Information
Helpline
Tel: 0800 800 6013
NAM
Tel: 020 7840 0050
International Community of Women
Living With AIDS
Tel: 020 7704 0606
Jewish AIDS Trust
Tel: 020 8952 5253
Oasis North London
Tel: 020 7485 2466
OPAM
Tel: 020 7281 2254
UCRA
Tel: 020 8808 6221
Zacca
Tel: 020 8365 1665
CWAC
Tel: 020 7247 9115
HAZ
Tel: 020 8214 1474
African Culture Promotions (ACP)
Tel: 020 8687 0339
Black Women’s Health and Family
Support
Tel: 020 8980 3503
Caress
Helpline: 020 8220 0110
Kingston, Richmond & Surrey African
Positive Outlook
Tel: 020 8546 1671
TACT
Tel: 020 8695 8111
AAF
Tel: 020 7738 7238
The Eddystone Trust
Tel : 01752 257077
Restorego
Tel: 020 8657 0555
ARCHRO
Tel: 020 7737 6019
Thames Valley Positive Support
Tel: 0118 950 3375
MacFarlane Trust
Tel: 020 7233 0057
Mid-Sussex Body Positive
Tel Helpline: 01293 552 300
St.. Peters House Project
Helpline: 01737 763 000
PPC
Tel: 020 7738 7358 or 020 7738 7333
Body Positive Cheshire & North
Wales
Tel: 01270 653 150
Shield South Yorkshire HIV Support
Group
Tel: 0114 278 7916
Derbyshire Positive Support
Tel: 01332 204 020
Shield South Yorkshire HIV Support
Group
Tel: 0114 278 7916
Streetwise Youth
Tel: 020 7370 0406
Vanguard Health Services
Tel: 020 76275170
Body & Soul
Tel: 020 7383 7678
Brent & Harrow Community Health
Projects
Tel: 020 8459 9040
The Brunswick Centre
Tel: 01422 341764
Doncaster Pathways
Tel: 01302 327 445
Body Positive Tayside
Tel: 01382 461 555
Lighthouse West London
Tel: 020 7792 1200
THT South
Tel: 01323 649927
National Long Term Survivors Group
Tel: 01449 780 211
Waverley Care Solas
Tel: 0131 661 0982
Naz Foundation
Tel: 020 8741 1879
Positive Action South West
Helpline: 0800 328 3508
Positively Healthy
Tel: 020 8977 4411
Body Positive Strathclyde
Helpline: 0141 248 8285
The River House
Tel: 020 8753 5190
PHACE Scotland
Tel: 0141 332 3838,
PHACE Scotland
Tel: 01224 587 166
The Brunswick Centre
Tel: 01422 341764, Mon-Thurs, 9am4.30pm
Positive Action
Helpline: 0800 980 1990
Thames Valley Positive Support
Tel: 01628 603 400
The Ribbons Centre
Tel: 023 8022 5511
Groundswell
Tel: 023 8063 1651
The Crescent Support Group
Tel: 01727 842 532
Staffordshire Buddies
Tel: 01782 201 251
Dudley HIV & AIDS Support Group
Tel: 01384 444 300
Wear Body Positive
Tel: 0191 510 1805
AIDS Trust Cymru, The SWISH Centre
Tel: 01792 461 848,
THT Cymru,
Tel: 01792 477540
Body Positive
Helpline: 01482 327 060
Body Positive Somerset
Tel: 01373 836 121
Reach Out Highland
Tel: 01463 711 585
Positive Action South West
Helpline: 0800 328 3508
THT West
Tel: 01225 444347
THT Yorkshire
Tel: 0113 236 4720
The Eddystone Trust
Tel Office: 01803 380692
The HIV Support Centre
Tel Office: 028 9024 9268
N.I. AIDS Helpline: 0800 137 437
LASS
Tel: 0116 255 9995
Positive Action South West
Helpline: 0800 328 3508
Freshwinds
Tel: 0121 456 8100
Positive Health Lincolnshire
Tel Office: 01522 513 999
Helpline: 0800 252 534, 24 hrs
Kernow Positive Support
Helpline: 01208 264866
THT Midlands
Tel: 0121 694 6440
Sahir House
Tel: 0151 707 0606
ABplus
Tel: 0121 622 6471
Mersey AIDSline:
Tel: 0151 709 9000
Body Positive Blackpool
Helpline: 01253 292 803 (24 hours)
Bedfordshire Body Positive
Tel: 01582 485 448
ACIA
Tel: 020 8687 2400
Body Positive Dorset
Tel Office: 01202 297 386
Helpline: 01202 311 166, 24 hrs
Body Positive North West
Helpline: 0161 873 8103
Lighthouse South London
Tel: 020 7816 4720
Brighton Body Positive
Tel: 01273 693266
AHEAD
Tel: 020 8316 4868
Open Door
Tel: 01273 605706
Harbour Trust
Tel: 020 8854 1788
THT South
Tel: 01273 764200
London Ecumenical AIDS Trust
Tel: 020 7793 0338.
THT West
Tel: 0117 955 1000
Mainliners
Tel: 020 7582 5434
Taifa Community Care Project
Tel: 020 7708 1781
Cambridge Body Positive
Tel: 01223 508 805
Positive East
Tel: 020 7791 2855
Positive Action
Tel: 020 8047 5529
Positive Action Project
Tel: 020 8534 5448
Positive Care Link
Tel: 020 7613 7700
Positively Women
Helpline: 020 7713 0222
SLAWO
Tel: 020 8648 1808
SOLCA
Tel: 020 8664 8657
Worldwide House of Hope
Tel: 020 8296 0105
Shield South Yorkshire HIV Support
Group
Tel: 0114 278 7916
THT Cymru
Tel: 029 2066 6465
The George House Trust
Tel: 0161 274 4499
Teeside Positive Action
Helpline: 01642 254 598
African HIV Policy Network
Tel 020 7017 8917
Begin Learning and Living with HIV
Tel: 01924 211 117
THT Midlands
Tel: 01902 711818
The Worcester AIDS Foundation
Tel: 01905 611 602
North Yorkshire AIDS Action
Tel: 01904 640 024
National Aids Trust
Tel: 020 7814 6767
The Positive Place
Tel: 020 8694 9988
Compassion Acceptance Need (CAN)
Tel: 020 7635 4463
Body Positive North East
Tel: 0191 232 2855
PIN (Positive In Northamptonshire)
Tel: 01604 634 969
THT Oxfordshire
Tel: 01865 243389
This infomation is available at
www.avert.org along with opening times
and further information
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