Brain Cancer Action
Week Edition
1 -7 MAY 2016
This newsletter produced with the assistance of
funds from the Vanzwan Accounting Plus Golf Day
INSIDE THIS ISSUE
Letter from the Chair
Diary Dates
New Grant
Support News
BTAA Educational Grants
RCD Brain Week
POM Retreats
Julia’s Story
Research News
Participants in the BTAA National Summit,
Brisbane, IBTA Week, 2015
Congratulations Diana
Accessing New Medicines
Staying connected
Fund Raising
The Brain Cancer
Action Week 2016
forums in Sydney and
Melbourne on 6 May
are supported by:
Barwon Health
Blackwood 8
Brain Tumour Alliance Australia
Brainstorm
Cabrini
Cancer Council NSW
Cancer Council Victoria
Cancer Institute NSW
Cure Brain Cancer Foundation
The Australian representatives at the IBTA
Summit, Barrie Littlefield, Sally Payne and
Susan Pitt. Sitges, Spain, 2015
BTAA.ORG.AU
Diary Dates
Thanks
Contacts
Monash Health
Olivia Newton-John Cancer and
Wellness Centre.
The Royal Melbourne Hospital
St Vincent’s Hospital Melbourne
Sydney Neuro-Oncology Group
(SNOG)
Yellow Diamond Foundation
Audience photo at the BTAA,
CCQ and CBCF Patient Forum, Brisbane,
IBTA Week, 2015
Mark Dalliston and Susan Pitt receiving
a cheque from Michael Allen EGM,
Corporate Services and Michelle Gregory,
Social Club Committee member at the
Engineers Australia morning tea.
Music students from the Swan Valley
Anglican Community School who gave their
time to play during the RCD Brain Week lunch
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
LETTER FROM THE CHAIR
In this issue we announce great
news about a grant from Cancer
Australia. Our expanding team
of volunteers at BTAA are also
excited by a couple of big events
coming up this year.
Association of Neuroscience
Nurses Read more about COGNO
including the keynote speakers
http://www.cogno.org.au/content.
aspx?page=cognoasm-home2016
Events
BTAA will be holding our 4th National
Summit in September in conjunction
with COGNO. The date will be
confirmed soon by BTAA.
The first event is Australian
Brain Cancer Action Week,
which runs from 1 – 7 May 2016.
During this week, the focus is on
raising awareness of the impact
of the disease on our community
and the need for more research
on therapies. It is also a time to
concentrate on the support needs
and existing services available for
patients and carers.
BTAA will be represented at the two
free patient and carer forums on
Friday 6 May, one in Sydney and
one in Melbourne, and look forward to
meeting many of you there.
The dates for International Brain
Tumour Awareness Week have
been announced by the International
Brain Tumour Alliance (IBTA) as from
22 to 29 October. Start planning
now. Perth-based Committee Member
Diana Andrew is coordinating her
second brain tumour community lunch
hosted by Professor Anna Nowak
during the week.
There are other events planned
for the week, including a fashion
parade organised by Dainere’s
Rainbow in Canberra on 1 May.
This year the Cooperative Trials
Group for Neuro-Oncology
(COGNO) 2016 will be held from
11 – 15 September. BTAA will
be supporting the brain tumour
supportive care nurse guru,
Mary Lovely, to visit Australia
for COGNO 2016 and she will
visit New Zealand on the return
journey to San Francisco. Mary’s
full title is Associate Adjunct
Professor Mary Lovely Ph.D.,
RN, CNR. Mary is the First Author
for Clinical Nursing Practice
Guidelines for Adult Brain Tumor
Patients through the American
2
BTAA.ORG.AU
We have set up subcommittees along
these lines:
SUPPORT Support the needs of
Australians affected by brain tumours
through our services, resources and
programs.
INFORM Develop and provide
high- quality information in a range of
formats including information that can
empower participation in decisions
about treatment and care
REPRESENT Advocate on behalf of
Australians affected or at risk of brain
tumours to ensure we hear their voices,
and for improved care and research
CONNECT Connect people and
organisations in the brain tumour
community
The programs for both events are
being finalised at the time of writing
but will be available here: http://
www.btaa.org.au/events
BTAA will have copies of the QUT
resource “It’s OK to Ask” at the
forum as well as a range of other
resources on display.
reviewed our policies on educational
grants for researchers and allied
health professionals and developed a
sponsorship plan. This plan is a lot of
work for a volunteer organisation and
is keeping us focused.
Our Support Team will be seeking
consumer input on many projects,
including interventions in the end
stages and on grief support for those
who have lost a loved one.
Susan selfie in Sitges, IBTA Summit, 2015
It was my privilege to attend the
Second IBTA Summit in Sitges, Spain
during IBTA Week 2015. There is an
excellent summary of events held
around the work on the IBTA website,
including our Australian Summit, See
all the events around the world here
http://theibta.org/awareness-andwalk-2015/
BTAA also supported the Youth
Cancer Summit and AYA Oncology
Congress held in Sydney in
December 2015.
With your support the BTAA volunteer
team is growing. We have spent
some time developing a vision
statement, principles and establishing
subcommittees, based on a threeyear work program. We have also
Keep up to date on events and
resources by looking at our news page
on our web site www.btaa.org.au and/
or following us on Facebook.
If you are thinking of running in one of
the large runs this year please consider
running for BTAA. Find us on the
Everyday Hero Channel. City to Surf
race registration opens on April 20,
2016. $25 allows us to provide a pack
of information to a newly diagnosed
adult and their family. $75 enables us
to provide a paediatric pack, including
a small gift for the child and any
siblings.
Thanks, all. Email your views to
[email protected]
Susan Pitt
Chair, BTAA
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
COGNO DATES 2016
BTAA will be supporting the brain tumour
supportive care nurse guru, Mary Lovely, to visit
Australia for COGNO 2016. Mary will visit New
Zealand on the return journey to San Francisco.
Mary’s full title is: Associate Adjunct Professor
Mary Lovely Ph.D., RN, CNR. Mary is the First
Author for Clinical Nursing Practice Guidelines for
Adult Brain Tumor Patients through the American
Association of Neuroscience Nurses.
Associate Adjunct
Professor Mary Lovely
Ph.D., RN, CNR.
CANCER AUSTRALIA GRANT |
SUPPORTING PEOPLE WITH CANCER
CUREFEST AUSTRALIA FOR
CHILDHOOD CANCER 2016
BTAA is thrilled to be one of four organisations
awarded Cancer Australia funding to improve the
coordination, accessibility and development of quality
cancer support initiatives for people with poorer
cancer outcomes. Our three-year project will develop
information resources to help brain tumour patients
improve the health and quality of life outcomes
for people from culturally linguistically and diverse
communities, including Arabic, Greek, Chinese,
Vietnamese and Easy English.
Congratulations to Amanda Griffin who has arranged
a fabulous venue for the 2nd Curefest Australia The iconic Sydney Opera House - on Sunday 25
September 2016.
Amanda Griffin at the BTAA Summit,
Brisbane, 2015.
Amanda has secured the
Northern Broadwalk for the
main event on the Sunday,
and this year we will be
introducing a candlelit vigil to
take place on the evening of
Saturday 24 September on
the forecourt of The Opera
House.
Our partner organisations include but are not limited to
Grey Matters Victoria, the NSW Oncology Groups –
Neuro-Oncology and Cancer Voices Australia.
BTAA Secretary Tricia Berman is developing the
detailed project plan, which includes a review of
existing resources and focus groups in the first year.
www.curefest.org.au/eventdetails.
For more information email [email protected]
DAIRY DATES 2016
SEPTEMBER 2016
COGNO, 11 – 15 September, Sydney. BTAA will
be supporting the Mary Lovely’s visit to Australia
MAY 2016
for COGNO 2016, and she will visit New Zealand
Brain Cancer Action Week, 1 – 7 May. Various events, on the return journey to San Francisco. Read more
forums on 6 May in Sydney and Melbourne. See
about COGNO including Mary and the other keynote
BTAA events page.
speakers here
Mel Johnson Goes Gray in May for BTAA and RPA
Brainstorm, 28 May Bathurst Panthers.
JUNE 2016
ISPNO (International Symposium on Paediatric NeuroOncology) 12-15 June in Liverpool, UK.
SNO (Society for Neuro-Oncology) 1st Meningioma
Conference, 17-18 June in Toronto, Canada. SNO is
jointly organized by the Society for Neuro-Oncology and
the Consortium on Meningioma in Toronto.
Curefest Australia 25 September, Sydney.
OCTOBER 2016
International Brain Tumour Awareness Week,
22-29 October 2016.
NOVEMBER 2016
SNO 2016, 17-20 November,
Phoenix, Arizona, USA.
JULY 2016
ASCO (American Society of Clinical Oncology) 2-7 July
in Chicago, Illinois.
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA.ORG.AU
3
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
New Brain Cancer Support Service
Provided by Catherine Holliday
The Centre for
Community-Driven
Research have built
special expertise
in the field health
system navigation and
recently commenced a
Brain Cancer Support
Service for patients
and their families.
This national service is coordinated by a centralised
cancer nurse specialist who is available on a dedicated
national phone line providing care coordination for
patients, caregivers and nurses caring for brain cancer
patients around Australia. It is not a ‘helpline’ per se,
rather patients and their families set an appointment
with our nurse to develop a care plan so that they can
access all the available services that our health system
has to offer, and anticipate the needs and challenges
they will face.
We will also implement a Nurse Network Program
with nurses employed at cancer treatment centres
around Australia. We offer these nurses education
opportunities, and personal and professional support
delivered through peer-to-peer mentoring, quarterly
in-service training focusing on best practice cancer
care and referral to existing services (including clinical
trials), and an annual cancer nurse retreat/seminar. By
up-skilling existing nurses, this model offers a costeffective way to ensure that at each cancer centre,
there are at least one or two nurses who understand
the clinical pathway of brain cancer patients.
As part of the program, we also aim to conduct a full
research evaluation to learn better clinical pathways,
adherence to Optimal Clinical Pathways and the care
needs of patients with brain cancer to inform future
clinical care.
To access the service email [email protected] or call
13004ANURSE (1300 42 68 77). More information is
available at www.13004ANURSE.org
Robert Connor Dawes Foundation
Brain Week 2 – 6 May
By Harrison Jones
In just over a month, ‘Brain Week’ is returning to
schools bigger and better than ever!
Since 2014, the Robert Connor Dawes Foundation
has been running the annual ‘Brain Week’ fundraising
event in schools around Australia (and even one in
New Zealand!). Inspired by the remarkable spirit of
high school student Robert Connor Dawes, who
passed away of Brain Cancer in 2013, ‘Brain Week’
encourages everyone to spread the word that the
brain is where the heart lives.
Brain Week 2016 will run from the 2nd to the 6th
of May. Schools who sign up are encouraged to
sell the official merchandise (badges, ribbons and
wristbands) for $2, host fun activities and find their
schools best Rubik’s Cuber! The highlight for many
is the ‘Go Grey in May Day’, a grey themed casual
clothes day on Friday the 6th of May – it’ll be the
comfiest day of the year! There’s never any pressure
with Brain Week, do as much or as little as you can.
Students Go Grey in May Day for RCD.
Head to www.brainweek.com.au to find heaps of info and
inspiration, and to register!
4
BTAA.ORG.AU
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
SNO 2016
BTAA Educational Grants
By Danette Langbecker.
BTAA is interested in hearing from
allied health professionals or
researchers interested in funding
assistance to attend national and
international professional events.
Grants of up to $600 for domestic
and $1,500 for international events
are available for BTAA members.
BTAA thanks the family of the late
Nicola Scott for enabling us to
provide this assistance.
BTAA provided a Nicola Scott Educational Grant to enable Danette to
travel to the 20th Annual Scientific Meeting and Education Day of the
Society for Neuro-Oncology.
Danette is a Research Fellow, Supportive & Palliative Care Research
Group, Institute of Health & Biomedical Innovation, Queensland University
of Technology, Brisbane. She writes:
Danette Langbecker
Twitter - @DHlangbecker
I was thrilled to have the opportunity to
attend the Society for Neuro-Oncology
20th Annual Meeting and Education Day
in San Antonio, Texas with the support
of BTAA. It was a massive conference,
attended by over 2,200 delegates, with
I am pleased to say, a recognisable
Australian group of clinicians and
researchers. Being such a big conference,
there were sessions on all different
aspects of neuro-oncology pertaining to
drug treatments and surgical approaches,
but also (as is my focus) on supportive
care and quality of life.
The first day of the conference was the Education Day, which discussed
modifiable factors that may affect patient outcomes such as diet, physical
activity and sleep, for both adults and children with brain tumours.
Although there has been a lot of research into these factors in other
cancer types, particularly breast cancer, we are just beginning to see
research being done on the influence of these in the brain tumour area.
The sessions showed the huge amount of potential for interventions and
changes to practice to try to improve both cancer outcomes and quality of
life, and I am very interested in building research in this area.
The main conference then expanded on this with several sessions
discussing quality of life issues. It was excellent to see a recognition that
all studies need to consider the impact of treatments on quality of life,
symptoms and other patient-reported outcomes in addition to survival, and
we had some good discussions on what outcomes should be collected
and the best ways to collect this data. The latest results were presented
from studies examining specific issues which are important to people with
brain tumours and their families, such as fatigue, cognitive functioning and
the experience and needs of family caregivers. Some novel findings were
presented, for example with regard to the quality of life of people with brain
tumours in developing countries and the impact of glioma on pregnancy. I
had the opportunity to meet with other researchers in this area and discuss
ideas for future studies and how we may be able to work together for a
common goal of improving brain tumour care.
Get along to COGNO, ASCO,
ISPNO, SNO, with some assistance
from BTAA. See the dates of these
events in this issue. BTAA Treasurer
Catherine Hindson is happy to
discuss this with you.
Email [email protected] for a copy
of our revised guidelines.
The late Nicola Scott.
www.btaa.org.au/nicola-scott.html
So I have now returned to Australia with extended knowledge, some great
connections and a renewed enthusiasm for my research. This can be a
challenging area in which to conduct research because brain tumours
are rare, but I think there is such a need for it and opportunity to make a
difference – I couldn’t imagine doing anything else! Many thanks to BTAA
for providing some financial assistance to make this trip possible.
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA.ORG.AU
5
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
Group Shot on arrival at Peninsula Hot Springs
Peace of Mind Foundation Retreats
By Rebecca Picone
The Peace of Mind Foundation provides practical
assistance to people diagnosed with brain tumours,
including financial assistance.
The Foundation is run by Bec and her brother
Clinton, based in Geelong.
Ladies First
On October 10th - 11th 2015, Peace of Mind
Foundation hosted the first ever ‘Women’s Retreat
for Brain Cancer’ in Torquay, Victoria. Over the two
days, we were honoured to have the company of 40
female brain tumour patients or carers who came
from all areas of Victoria and NSW to be at the retreat.
On arrival, every lady received their giant gift bags all
proudly donated by local Torquay businesses. Our
guests spent the afternoon enjoying the activities in our
three separate conference rooms - The Pamper Room
(hair, make-up, massage and nails), The Photography
Masterclass Room, and The Smash Book Journal
Making Room.
On a Saturday evening at our cocktail dinner, all the
ladies looked incredibly glamorous after their pamper
session, and we were privileged to hear the life stories
from two very inspiring guest speakers Trisha Broadbridge and Moira Kelly.
On Sunday, we set off via bus to catch the Searoad
Ferry across the bay from Queenscliff to Sorrento (and
to most of the ladies amusement we were also joined
by over 600 men in lycra cycling as part of the ‘Around
the Bay’ bike ride). Sunday was a great day of soaking
up the sun at the gorgeous Peninsula Hot Springs in
Fingal, accompanied by a delicious picnic lunch.
Our retreat may have only lasted two short days, but I
can positively say that lifelong friendships were formed
and due to the wonderful women who attended, and
over 30 fabulous lady volunteers the retreat was a
successful endeavour that we shall certainly do again.
But for now, 2016 is the men’s turn!!!!
Fun and laughs at Saturday night Cocktail Dinner
Men’s Turn
On Saturday 8th October 2016 we will be hosting
the first ever ‘Men’s Retreat for Brain Cancer’ in
Geelong, Victoria. Any male with the diagnosis of a
brain tumour is a carer of a loved one or has lost a
loved one to a brain tumour is invited to attend.
This retreat will be an all-day event, culminating in a
traditional Aussie Blokes BBQ dinner! I cannot confirm
the full list of activities, at this early stage, I can provide
you with a few clues....Sport, motorbikes, cars, beer,
inspiring guest speakers and, of course, it would not be
a great Men’s retreat if we didn’t include a Pub Lunch!
Full details and ticket sales will be released online mid
to late April via our website.
www.peaceofmindfoundation.org.au
Thanks, Bec and Clinton.
Some of the ladies soaking up the sun in the hilltop spa
6
BTAA.ORG.AU
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
PATIENT STORIES
BTAA Committee member Julia Robertson
Julia Roberston is a committee member based in
Brisbane. Julia volunteers for BTAA and also helps
the Peace of Mind Foundation, volunteering at the
Women’s Retreat and organising Tunes for Tumours.
She also studies and BTAA asked her to tell us
about what she studies and why. Julia writes:
Following my brain surgery, I had some memory
deficits. I was not sure if my ‘pre-surgery’ skills would
still be available to me so I decided to do some study
to upgrade my skills so that maybe I could secure
a job. To test myself and see if I would be able to
remember anything long enough to be examined on it,
twelve months post op I enrolled in a Dual Certificate
III in Business and Business Administration at my
local TAFE and was told that I should make contact
with Disability services so that I could get assistance
should I require it. I was horrified. The word ‘Disability’
grated on me. I did not think of myself as ‘Disabled.’ I
bit the bullet and signed up. I completed my Certificate
III without assistance and it gave me a real sense of
achievement. ‘Disabled,’ not I!
I then decided to try a Certificate IV Adult Tertiary
Preparation. It is a gateway program into University.
My idea was that if I could make it to University and
beyond I would like to get into brain tumour research.
I signed on with Disability Services as I had done
the previous year. It still grated. I did not like being
classified as disabled. I did, however, need help. I
asked for it, and DS gave it to me. I felt like I was
somehow cheating because other people in my course
were not receiving the same support. It took a little
while, but I eventually got it through my head that it
was okay to ask for the help I needed and that it was
levelling the playing field. The things for which I was
receiving help were things that other people had no
problem. Rather than me ‘cheating’ I was giving myself
a chance to operate at the same level as everyone
else. I managed to pass all ten subjects with honours
and was offered a spot in a Bachelor of Clinical
Science. I was thrilled to receive the offer. My friends,
family and lecturers were all very proud of me for
putting in the effort, pushing through the roadblocks
and making it through.
Julia Robertson, left, pictured with Dr. Kerryn Hayman, one of
Julia’s lecturers at the local TAFE.
I started the Bachelor of Clinical Science and quickly
found that the three subject course load was too
much. I dropped back to three and things went a lot
more smoothly. I had great support from disability
services at University. I had overcome my fear of the
label ‘Disabled’ and looked at it more as ‘enabled’ by
using the services available; I was ‘Enabling’ myself to
perform on a more level playing field. After a period of
illness, I had to take some time out.
I have now returned to study but have transferred over
to Bachelor of Psychological Science. I may not be
able to help find a cure; I can, however, work towards
Neuropsychology and help the patients and their
families to work through this brain tumour journey.
Thanks, Julia and good luck with your studies and your support
for our cause.
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA.ORG.AU
7
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
RESEARCH NEWS
Congratulations Diana | COGNO
CAP member
By Susan Pitt
BTAA is pleased to have our Perth based committee
member, Diana Andrew, on our committee. Diana is
a volunteer for Neuro-Oncologist, Prof Anna Nowak,
and a Community Representative on Cancer Council
WA Assessment Panel for Scholarship/Fellowship
Fund applicants.
Diana was recently elected as a member of the newly
formed Consumer Advisory Panel (CAP) for COGNO
under CAP Lead Robyn Leonard. Diana said, “I feel
honoured by selection and believe the COGNO role in
combination with my BTAA involvement offers holistic
brain tumour contribution, so I feel privileged.”
Team BTAA at COGNO, L to R, Nicola Sheehan, Julia Robertson,
Tricia Berman, Philip Steel, Diana Andrew and Catherine Hindson.
Brain Cancer Biobanking Australia
Thanks to Diana Andrew and Mythily Mariasegaram, Project
Coordinator of BCBA who provided content for this article.
BCBA www.bcba.org.au was established in
2015 through the sheer visionary commitment of
Consumer Advocate Robyn Leonard as a national
consortium of paediatric and adult brain cancer
clinicians and researchers who joined forces to
network Australia’s geographically and operationally
disparate brain cancer biobanks.
A Biobank collects and ‘cold’ stores various types
of clinical samples such as blood and tissue and
associated data (e.g. clinical history) from consenting
donors for research into the prevention, diagnosis
and treatment of diseases such as brain cancer.
Researchers with ethically approved projects can seek
access to donated tissue for their research.
There is growing international recognition that
integration of individual biobanks (i.e. in cold storage in
city hospitals across the country) is required to provide
the critical mass of biospecimens needed to study the
complexities of cancer, particularly uncommon ones
like brain cancer.
BCBA’s overarching goal is to translate research
findings to clinical care and improve treatment and
outcomes for patients through a better understanding
of the molecular signatures, or biomarkers, of brain
cancer in individual patients.
BCBA is not only committed to accelerating brain
cancer research within Australia but is seeking
opportunities for large-scale international research
collaboration. According to leading international brain
cancer researcher, Dr. Timothy Cloughesy, Director
8
BTAA.ORG.AU
Professor Anna Nowak and Michael Hawker from the Brain
Tumour Association of WA at the Perth IBTA Week lunch.
UCLA Neuro-Oncology Program, Australia has the
potential to establish the largest centralised registry
of brain cancer tissue and data in the world and by
allowing global access to that register, Australia could
do more than Europe or the US to advance brain
cancer research.
Professor Anna Nowak is Co-Chair of BCBA and
in her voluntary role with Professor Nowak, BTAA’s
Perth-based Committee Member Diana Andrew is
assisting BCBA in any way she can. Since Diana’s
husband Jeff died last year, Diana is passionate about
supporting those confronting the challenges of brain
cancer research. Currently, Diana is working with
Professor Nowak and the BCBA team in developing
a questionnaire aimed at seeking insight into how
the Australian brain tumour community feels about
brain cancer biobanking. BTAA will offer BCBA with
practical support including distributing the biobanking
questionnaire to our subscribers as an online survey
once preparation is final over the coming months.
Contact Diana via email to [email protected]
Read more about Biobanks at http://www.bcba.org.au/biobanks
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
Accessing Medicines and Clinical Trials in Australia
Guide to Accessing Cancer
Medicines in Australia
By Susan Pitt
OVERVIEW: WHAT IT TAKES TO GET A NEW CANCER
MEDICINE FROM DISCOVERY TO PATIENTS
4. RECOMMENDATION FOR REIMBURSEMENT:
In Australia, most prescription medicines are
subsidised by the Commonwealth Government
through the Pharmaceutical Benefits Scheme
(PBS) to ensure they are affordable. An
independent expert group, the Pharmaceutical
Benefits Advisory Committee (PBAC),
evaluates new medicines to determine their
cost effectiveness and recommends to the
Government which medicines should be added
to the PBS.
The process of getting a new medicine from
discovery to patients is lengthy and involves
several key steps. Each stage - from discovery
through to trial, regulatory approval and subsidy can vary depending on the medicine.
1. PRE-CLINICAL RESEARCH: Pharmaceutical
companies and their innovation partners
spend an average of four years1 developing
new molecules.
2. CLINICAL TRIALS: New molecules that show
promise in the lab are then tested in carefully
controlled clinical trials. The various phases of
clinical trials take an average of nine years to
complete.2 Only a small number of medicines
that enter the trial process are approved.
5. MINISTERIAL OR CABINET REVIEW:
The Government reviews PBAC
recommendations and reaches a decision
(e.g. to add a new medicine to the PBS).
6. PBS LISTING DATE: The Health Minister decides
when new medicines will be added to the PBS.
3. REGISTRATION: Pharmaceutical companies
apply to the Therapeutic Goods Administration
(TGA) to seek approval to market (sell) a new
medicine in Australia. The TGA regulates the
supply, import, export, manufacturing and
marketing of all therapeutic goods in Australia.
7. NEW USE: Should clinical trials suggest a
medicine is effective in treating another
condition (referred to as a new indication),
pharmaceutical companies begin a fresh round
of the regulatory and reimbursement processes
detailed above.
HOW DO CLINICAL TRIALS WORK?
Some clinical trials monitor patients for many
months, or even years, to collect data before a final
report can be submitted for regulatory approval.
In Australia, clinical trials are regulated by laws
and codes of conduct to protect the patients who
volunteer to participate and ensure the integrity
of the research. All trials must be approved by a
Human Research Ethics Committee.
Various organisations can be involved in the
clinical trial process, including government
departments and agencies, research groups,
foundations and charities. However, most clinical
trials for a new medicine are sponsored by a
pharmaceutical company.
New cancer medicines are usually compared to
something else, known as a control. This can be a
placebo (which contains no medicine) or a treatment
already in use (usually the current standard of care).
The most reliable data – often referred to as ‘gold
standard’ – comes from trials where patients are
randomly assigned to two or more groups and where
neither patients nor researchers are aware of which
group a patient has been assigned to.
1
Mark E Bunnage, Getting pharmaceutical R&D back on target. Nature Chemical Biology, Vol 7, June 2011, p335
2
Ibid
Guide to Accessing Cancer Medicines in Australia
New Guide
There is a great new guide to accessing cancer medicines in Australia
developed by BMS. The guide covers: what it takes to get a new cancer
medicine from discovery to market as well as how drugs are regulated,
and funded, in Australia. The guide includes a clear explanation on how to
access to new medications before the TGA approves them or before they
are available on the PBS.
Read the new guide on the BTAA website – there is a short and long form.
http://www.btaa.org.au/page/16/clinical-trials-in-australia
1
Funding for Research
It is a tough, time consuming, highly competitive process
for researchers to obtain funding. See the range of
projects funded by Cancer Australia on priority driven
collaborative cancer research.
http://canceraustralia.gov.au/research-data/research/prioritydriven-research
Many brain tumour related research projects miss out on
government funding.
One of the major funders of research in Australia in
the area of brain tumours is the Cure Brain Cancer
Foundation (CBCF).
BTAA receives regular enquiries about the latest
therapies, and interest in the GBM Agile program in
particular. The CBCF information on the trial has been
updated and this trial will now be recruiting late in 2016.
See http://www.curebraincancer.org.au/page/178/gbmagile-information-for-patients
Michelle Stewart, Head of Research, writes: “We
scour the world for the best clinical trials and work with
our international partners to bring them to Australia, so
that novel treatments are available at the same time for
Australian brain tumour patients as they are globally”.
Projects funded in the CBCF Clinical Trials Stimulus
Program include:
•
GBM Agile: Adaptive Global Innovative Learning
Environment.
•
Zero Childhood Cancer: Personalised Medicine
Program
•
Phase 2 Clinical Study of Med 14736 in patients
with Glioblastoma
•
VERTU Clinical Trial
•
Phase 1 study and biodistribution study of KB004
in patients with Glioblastoma
Read more about these trials and other research and the
CBCF research strategy here.
https://www.curebraincancer.org.au/page/158/research-programs
BTAA shares Cure Brain Cancer Foundation’s (CBCF)
vision that every patient diagnosed can access new
treatments through world-class clinical trials.
Associate Professor Kerrie McDonald,
Head of the Cure Brain Cancer Neuro-Oncology Group
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA.ORG.AU
9
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
Staying Connected After Brain Tumour
Thanks, Julia Robertson for arranging this contribution.
Investigators:
•
Student Researcher: Lee Cubis
•
Chief Investigator: A/Prof. Tamara Ownsworth
•
Associate Researchers: Prof. Suzanne Chambers
(Griffith University), Prof. Joanne Aitken (Cancer Council
Queensland
Brief Summary:
•
People with a brain tumour can often feel alone in their
experience. Changes in physical abilities, communication,
behaviour and mood, may lead to a loss of employment,
driving cessation and reduced ability to attend social
and leisure activities. The loss of valued social activity
and relationships can mean people's social network is
exhausted when they most need support.
•
This project aims to gain a greater understanding of
changes to social networks after diagnosis of brain
tumour from the perspective of those living with brain tumour. The finding of this research will inform
interventions aimed at supporting social participation after brain tumour.
•
If you have been diagnosed with primary brain tumour and are aged 18-85 years of age you are eligible to
participate. Your participation will improve our understanding of how people stay connected to important
social networks, and the effect that this has on their health and well-being.
•
Outline of Participation Requirements:
•
You will be asked to complete an interview lasting approximately 45 minutes over the telephone. This
interview will include questions about your demographic and health information, a brief assessment of
memory, language and attention, and issues regarding your emotional well-being and participation in social
activities before and after your brain tumour.
•
If you live in South-East Queensland and would prefer to complete the interview face-to-face, the Student
Researcher will meet you at a place of your convenience (e.g. at your home, a local library or at Griffith University)
How to Take Part:
If you would like to participate in this study or require more information,
please contact Lee Cubis on 0438 208 783 or by email: [email protected]
Wear a Hat for Brain Tumour
Awareness and Support!
Brain Tumour Alliance Australia (BTAA) is the only national support and advocacy
organisation for the brain tumour patient, family and caregiver in Australia.
Wear a hat for one day to raise funds to help support those affected by brain tumours.
To find out more email [email protected] go to our website www.btaa.org.au
10
BTAA.ORG.AU
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
FUNDRAISING
BTAA relies on the generosity of our community to help us
provide support and advocacy on behalf of our community.
You can fundraise for BTAA using the Everyday Hero Channel –
including the big runs.
Or you can set up your own fundraising page on our web site.
Drop us a line at [email protected] and we will send you a fund
raising kit.
Or donate to BTAA. https://www.btaa.org.au/donations
Thanks to our recent champion fund raisers –
you can still donate to them here:
www.btaa.org.au/my-fundraising
Brilliant ride by young Thomas Daldy, who
rode his bike to fundraise in memory of his
uncle, Pedro Cafe. Great work Thomas.
You inspire us.
Also thanks to Danielle Sullivan,
who is raising funds in memory
of her mum Lindy.
Thanks to Clare and the family
of the late Dr. Gary Sinclair.
THANKS
BTAA thanks its donors. Your
funds continue to help grow the
organisation and each day it is
more capable, committed and
able to assist to patients and
caregivers.
As noted above BTAA received
significant donations from fundraisers
in memory of the late Pedro Cafe,
Lindy Sullivan and Dr. Gary Sinclair.
Also donations in memory of Chris
Barnes, Damian Coby Finch, Rev
Andrew Donnelly and Jane Harvey.
http://www.btaa.org.au/page/14/onemans-experience
Ongoing donations received from the
families of the late Nicola Scott and
the late Sharon Le Roy.
Thanks also for significant
donations from:
Lynette Williams (Belconnen
Walking Group), St Mary’s High
School (Wear a Hat for the Day
for BTAA), Tigh Gaelach Gourmet
club, Alice Parsons, R. A. Social
Club, Ho Kuo-ning, Estrella
Munoz, Jeff Robson, Christopher
Bickerstaff; Jason Campbell;
Clare Curwen Walker; Clinton
Leahy; Jennifer Guzman; Simon
Montgomerie; Ann Onymous!,
Mairi Winkler, Brian Holloway, and
Lauren Zammit.
Thanks again to Andrew Simpson,
Debbie Pollard and Sylvia
Gallagher, who make regular
donations to BTAA. We note the
passing of Joan Pitt, who made
treasure bags for BTAA over several
years.
And Barry Walls and friends.
Thanks for assistance to Catherine
Smith and Wholistic Financial
Services for assistance with audit
services.
Thanks also to all those that held
awareness and fundraising events
for BTAA or our colleagues in other
organisation supporting our cause.
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221
BTAA.ORG.AU
11
BTAA INTERNATIONAL BRAIN TUMOUR AWARENESS WEEK EDITION | 25 – 31 OCTOBER 2015
Vanzwan Accounting Plus Golf Day funds raised by
supporters helped us to produce this newsletter.
Thank you for reading
Editor Susan Pitt and Mark Dalliston
Designed by Jon Shirley Creative
Printed by Mavericks Printers
Authorised by Susan Pitt, Chair,
PO Box 717, Mawson, ACT 2607
SPREAD THE WORD!
Please LIKE, ADD, SHARE, COMMENT and SPREAD the word via
our Twitter, Facebook and LinkedIn accounts! This not only helps our
voice to be heard but also gives you a chance to reach out, interact
and communicate with BTAA and the wider brain tumour community!
1800 857 221
Brain Tumour
Alliance Australia
@BrainTumourAA
Search ‘BTAA’ for
various videos
www.btaa.org.au
Disclaimer: The material provided in this Newsletter and on our website is general in nature. It is made available on the understanding that BTAA is not
engaged in rendering professional or medical advice. Before relying on the material users should carefully evaluate its currency, completeness and
relevance for their purposes, and should always obtain appropriate medical advice relevant to their particular circumstances.
12
BTAA.ORG.AU
ABN 97 733 801 179 | Incorporated in the ACT: AO45837 | Freecall number 1800 857 221