Presentation for SDBTT Astro Fund
Brain Tumour Information Day
17 March 2008
Hope for the Future:
Alliances and Promising Areas of
Research
SLIDE 1
Hello everyone,
and thank you to the Samantha Dickson Brain Tumour Trust and the Astro Fund for inviting me to speak at this
excellent Brain Tumour Information Day.
It’s good to finally meet so many of the people who are participants in
the online support group.
My name is Kathy
Oliver and I’m the Secretary of the International Brain Tumour Alliance which
is a worldwide coalition of brain tumour support, advocacy and information
groups.
I am neither a
doctor, nurse nor researcher.
But one January
night four years ago, and in the six seconds it took for a neuro-surgeon to say
to my husband and me: “I’m so sorry your son has a brain tumour” we were
catapulted into a strange new place where, never in our wildest dreams, we ever
thought we would be.
We were sitting
in a tiny, windowless room in a
We didn’t speak
the language. We didn’t know how to get
from A to B. But most of all, we were
filled with dread of the unknown road ahead.
We had no map, no compass, no anchor to steady us.
We realised
immediately, as I’m sure did all of you, that there would be many challenges in
this new place.
But despite some
of the more difficult challenges that all of us in this room face, I think it’s
important not to lose sight of the fact that there are beginning to be reasons
for realistic hope when you are catapulted, as we all were, into that strange
and foreign land.
SLIDE 2
First, let me introduce
you to a promising equation. I hope by
the end of this presentation that we’ll be able to understand it, after taking
a look at not only promising therapies but promising alliances as well. So I’d like you to think about this:
What does the
globe, a pair of old trainers, a researcher, an operating theatre, a small
capsule, a brick wall, a guy with a bandana and a guitar, a new day and a
moonlit night have to do with brain tumours?
SLIDE 3
Well, let’s start
with the globe.
Because of their challenging nature, their rarity, and the way they can
affect people, brain tumours require a truly global focus of attention in order
to raise awareness of this disease. New
alliances need to be formed because no one person or institution can afford to
be an island when it comes to treating brain tumours. There is power, strength and combined
knowledge in alliances. And from the
patient perspective, there’s less of a feeling of being alone when one can
become part of a concerted effort to make things better.
SLIDE 4
This is the reason why the International Brain Tumour Alliance – the IBTA
– was established in 2005 during the World Federation of Neuro-Oncology and
European Association of Neuro-Oncology conference in
About 50 people - including patients, clinicians, researchers,
scientists, caregivers and brain tumour charity officials from eleven different
countries - came together to establish a
coalition of like-minded people, all dedicated to improving the situation for all
those whose lives have been touched by a brain tumour, despite the miles
between them, the different time zones and the different cultures.
As we all know, brain tumours don’t discriminate by sex, race, geography,
age, religion or class. An enemy as
clever as a brain tumour can only be vanquished by a concerted global effort.
SLIDE 5
So the IBTA was established to assist with this goal.
As I said, we’re an international alliance.
We’re a non-governmental, not-for-profit organisation.
And we try to provide a louder voice for those living with a brain tumour.
SLIDE 6
We seek a wider public recognition of the specific challenges brain
tumours present.
We offer our assistance and expertise.
We encourage the formation of brain tumour support groups in countries
where they don’t yet exist.
We advocate for access to promising new treatments.
And we try to instil a greater measure of hope within the international
brain tumour community.
SLIDE
7
One of the ways we learn about promising new treatments is for the IBTA
Chair, Denis Strangman, and me to attend brain tumour conferences where we’re
able to hear presentations on the latest research and clinical trial results. Attending these conferences, we’re also able
to chat informally with leading clinicians from around the world and establish
good contacts with them. We also sometimes
do presentations at these conferences in order to put forward the patient
perspective and to ensure that medical professionals are aware of our concerns
and needs as patients and caregivers on this journey.
So here we have a few photographs of some of the conferences and meetings
Denis and I have attended in the last few years.
I never ever thought I’d learn how to say the words “brain tumour” in
various foreign languages. But in
speaking to or emailing brain tumour patients from Western and Eastern Europe,
Africa, Russia, America, Canada, Australia, New Zealand and beyond, there’s one
thing I have learned. Brain tumours
spell challenge in any language.
SLIDE 8
So, where do these old trainers come into the picture and what do they
have to do with alliances?
SLIDE 9
Well, in 2007 – and as part of its awareness raising initiative – the
IBTA launched the inaugural Walk Around the World for Brain Tumours and the
International Brain Tumour Awareness Week.
Our idea was to encourage patients, caregivers, families and all those
involved professionally in the field of brain tumours to unite across country
borders in the last week of October and do some kind of project to raise
awareness of this disease.
The main project was the Walk Around the World for Brain Tumours whereby
brain tumour charities and groups organised sponsored walks. The funds raised by these walks were directed
to local brain tumour research institutions or groups who provide support for
brain tumour patients. Not a penny from
the walks or associated activities went to the IBTA.
But the mileage achieved was donated to the IBTA in an effort to reach
our target goal of 40,000 kms which is once around the world at the
Equator. Walks could take place any time
in 2007 up to the end of the Awareness Week.
SLIDE 10
So in 2007 there were 83 walks in 18 countries and regions. Twenty-two thousand people walked around the
world for brain tumours. Walks ranged from
those involving just one person to a walk involving 4,000 people. And from just 14 walks for which we know the
amounts collected, approximately $1.6 million US Dollars was raised for brain
tumour research and support activities.
SLIDE 11
We set out to achieve 40,000 kms – once around the world at the Equator.
In the end over 114,000 kms were walked – that’s two and a half times
around the world, not just once!
SLIDE 12
And here are just a few of the photographs from the Walk Around the World
album. If any of you sitting in this
auditorium today are feeling lost and alone, please do take a good look at this
slide because it will demonstrate that you aren’t alone and that there are
people all around the world who really care about helping you and working hard
together to raise awareness of brain tumours.
From the Himalayas to Holkham Hall in
SLIDE 13
We’re repeating the International Awareness Week and the World Walk this
year. The dates are Sunday, 26 October
to Saturday, 1 November 2008. We already have the support of over 100 brain
tumour relevant organisations around the world. And here you see them listed – a solid block
of text on this slide representing thousands of people who are supporting brain
tumour patients around the planet.
SLIDE 14
And now for the next part of the equation – the research, surgeons,
clinicians and therapies.
I should add here that my layman’s comments in this presentation aren’t in any way meant to constitute medical or other advice or recommendations. Regardless of information appearing in a presentation such as this, medical professionals should always be consulted before any decision is even considered or any course of treatment is undertaken. Also, therapies, devices, treatment approaches and other information mentioned in this presentation doesn’t necessarily imply endorsement by the IBTA.
SLIDE 15
Following on from decades of very little progress in the field of brain
tumour research and treatment, recent years have seen new improvements that
have certainly changed the landscape of this disease.
Many questions are being considered.
The goal in answering these questions is to find a cure for brain
tumours…or at least to be able to manage them as a chronic condition.
SLIDE 16
There are now new ways of looking at brain tumours.
For example: -
Is a glioblastoma multiforme one type of brain tumour or does it
represent a variety of different malignant gliomas which need to be identified?
How should low grade gliomas be treated?
What role do stem cells play?
What combination therapies will emerge and what role will they play?
What will constitute “new best practice”?
SLIDE 17
Scientists and clinicians are now looking, for example, at genetic
markers to see what makes one tumour different – or similar – to another. Use of these genetic markers, such as the
loss of chromosomes 1p and 19q, the status of an enzyme called MGMT and various
other repair and signalling genes may help doctors to better identify what
elements they need to target. I’ll
mention another aspect of genetic markers later in my presentation.
I think the days are gone when it was believed that there might be one
magic bullet to treat brain tumours.
Nowadays, clinicians are looking at combinations of therapies which have
a synergistic activity and a greater response than if they had been given on
their own as single agents. This is
known as the “multi-modal approach” or the “cocktail approach”.
SLIDE 18
There are now a growing number of exciting and hopefully promising areas
and therapeutic agents which are under examination in labs and clinics.
SLIDE 19
Perhaps one of the biggest reasons to be hopeful is that today more and
more laboratories and institutions are researching brain tumours. This may be due, in fairly substantial part
to increased advocacy, awareness raising and fund raising on the part of brain
tumour charities and other patient organisations who often provide start-up
grant funding for research projects.
Research and treating
institutions are also forming alliances so as to share knowledge in the hope of
better outcomes for brain tumour patients.
One example of this would be Brain Tumour Northwest which involves the
Universities of Central Lancashire and Wolverhampton together with the Lancashire
Teaching Hospitals NHS Trust,
Another example would be the centre of excellence for brain tumour
research at the
In various institutions and labs around the world, researchers are
looking at such things as the mechanisms of brain tumour growth and control,
the development of targeted therapies and the study of immunotherapies.
SLIDE 20
On the imaging front…
Apart from CT scans and standard MRIs, doctors now have a new arsenal of
imaging techniques which can give them helpful additional information about
brain tumours:
With PET scanning and SPECT scanning, doctors can assess metabolic
activity in the brain – that is, the way it converts glucose into energy. PET scanning can help to determine the
difference between a benign brain tumour and a malignant one because malignant
tumours are more metabolically active than benign tumours.
Perfusion MRI can also be helpful in evaluating cerebral blood flow. Malignant brain tumours have increased blood
volume which corresponds to a higher degree of vascularity. Some doctors use Perfusion MRI to help them
distinguish pseudo progression from tumour progression.
SLIDE 21
On the surgery front…
Neuro-surgical techniques and equipment have come on tremendously and
continue to improve, resulting in better efficiency and safer outcomes.
Awake craniotomy, where suitable, can be used when tumours involve a
delicate or “eloquent” area of the brain.
Image guided navigation during surgery can help a surgeon find the tumour
target with millimetre accuracy.
Intra-operative MRI allows for scanning at any time during neuro-surgery
to help monitor the progress of an operation.
New developments in surgically-placed devices and therapies - such as
catheters for locally delivered drugs straight to the tumour site and
chemo-impregnated wafers - are being refined.
SLIDE 22
On the radiotherapy front…
In addition to newer ways of giving radiotherapy to certain kinds of
brain tumours such as 3D conformal radiation therapy, stereotactic radiotherapy
and radio surgery (also known as gamma knife), doctors now combine chemotherapy
with radiotherapy. An example of this is
temozolomide which is first given for six weeks alongside the radiotherapy
schedule and then continued on its own for a time after radiotherapy.
A landmark multi-centre, international clinical trial, the results for
which were announced in 2005, proved that temozolomide has a synergistic effect
on radiotherapy and, together with its post radiotherapy course, results in
extended survival in patients with newly diagnosed glioblastoma multiforme.
And thanks to the efforts of the alliance of UK brain tumour patient
organisations, clinicians and industry who campaigned for eighteen months to
get this groundbreaking therapy subsidised on the NHS in England and Wales, as
of September 2007 newly diagnosed glioblastoma multiforme brain tumour patients
can access this combination therapy for free, provided they meet certain criteria.
SLIDE 23
On the chemotherapy and other agents front…
Although it would be premature to say that a whole galaxy of treatments
is emerging for brain tumours, it would be fair to say that progress is being
made in the way of a number of tongue-twister-named treatments which are
showing efficacy in clinical trials.
Bevacizumab (otherwise known as Avastin), cilengitide, enzastaurin, and
cediranib (otherwise know as Recentin) are what are called anti-angiogenesis
agents that target the greatly increased number of blood vessels which feed a
tumour. In effect these treatments starve the tumour of their blood supply,
their oxygen and their vital nutrients.
These drugs block a protein called VEGF, one of the factors that brain
tumours use to build new blood vessels. These drugs seem to be particularly
promising and are currently the subject of various clinical trials around the
world.
Novel approaches to malignant gliomas include drugs that stop cell
division. These include tamoxifen, irinotecan
used in combination with bevacizumab, and other therapies.
Immunotherapy seems to hold promise too.
There are two different approaches.
One involves so-called “off the shelf” immunotherapies that hunt out
tumour cells which express a particular protein. The other approach involves “autologous
immunotherapies” which are individualised by being made from a patient’s own
resected tumour tissue and that zero in on specific proteins which are
expressed by a patient’s own tumour.
There is also a suggestion that immunotherapy might be given in
combination with chemotherapy to enhance the effectiveness of chemo.
Brain tumour stem cells, the so-called “generals” of the invading tumour
cell army, are also being studied so that specific features of these cells can
be identified and targeted with suitable treatments.
So that is all looking pretty good.
SLIDE 24
But now we come to the brick wall in the equation. Unfortunately, this a bit of a negative
aspect amongst all this positivity but one it’s important to be aware of.
SLIDE 25
First…
With all of these promising treatment advances in the developmental
pipeline, we have to be aware that regulatory and rationing bodies, such as,
for example, the National Institute for Health and Clinical Excellence (NICE)
here in the UK or the FDA in the US or the Pharmaceutical Benefits Advisory
Committee in Australia, or Pharmac in New Zealand could possibly slow down or
even prohibit access to new therapies.
To be fair, NICE has recently adopted a faster, hopefully more efficient
system of appraising new therapies. But
their mechanism for appraising new treatments remains based on whether or not a
treatment is cost-effective to the exclusion of considering other factors such
as the value of even a limited extended survival with good quality of life and
the cost benefit a caregiver can bring to the equation.
Cutting edge
therapies for brain tumours don’t come cheap.
Single therapies are expensive and we’re now seeing combination
therapies of two or more of these costly agents. And while governments claim to have the
willingness and strength to improve cancer survival rates across
Second…
I spoke a little while ago about use of genetic markers to determine
targeted therapies for brain tumour treatment.
As patient advocates, we need to be aware that this same information could
be used by regulatory bodies to implement a poorly-founded method of
discrimination against patients. So
before access limiting methods based on genetic marker tests are incorporated
in any National Health Service policy for brain tumour therapy, the means of
assessing these genetic markers must be rigorously examined and validated on an
internationally consistent basis.
Indeed, leading European neuro-specialists Professor Martin van de Bent
and Dr Johan Kros published a paper on this very issue a few months ago. They said – and I quote - : “…the application
of these tests is far from straightforward, and certain standards are required
before any test can be introduced into the daily management of patients.”
SLIDE 26
Additionally, governments and major international and national cancer
control organisations have prioritised prevention, screening and healthy living
campaigns in the fight against cancer.
These are all excellent initiatives of course.
But not every cancer can be helped by this approach.
SLIDE 27
As for brain tumours and prevention?
Well, the cause of most primary brain tumours is generally unknown so
without knowing their causes, there can be no prevention programmes for brain
tumours.
Brain tumours mostly appear to attack at random so universal screening
for them is unrealistic.
Anti-smoking campaigns surely save more lives from lung cancer. Weight control and healthy eating might also
help cut some cancers occurring. But
there appear to be no such lifestyle shifts in order to avoid a brain tumour.
SLIDE 28
And so we come to the penultimate part of the equation – a guy with a
bandanna and a guitar.
This is David M Bailey, an American singer/songwriter who was diagnosed
nearly a dozen years ago with a glioblastoma multiforme brain tumour and given
six months to live. You can read more
about him on his website. I’ll show the address in a minute.
Eleven years, 16 CDs, 44 American state tours and a British concert
series later, David and his music are very much alive and well.
SLIDE 29
David and Matthew, pictured here in the lower left photograph are two
very long term survivors of a brain tumour and are symbols of hope.
SLIDE 30
And for those in need of a little hope on this journey, there are other
inspirational survivor stories on the Virtual Trials website at
www.virtualtrials.com one of the most
respected and best sites on the internet for keeping up to date with brain
tumour treatments and background information.
Hope is vital.
One of
He said: “…hope,
not defeat should always be the
starting point, no matter someone’s diagnosis.”
In seeking to
define “hope”, the American doctor Jerome Groopman, writes in his book “The
Anatomy of Hope”:
“Although there
is no uniform definition of hope, I found one that seemed to capture what my
patients had taught me. Hope is the
elevating feeling we experience when we see – in the mind’s eye – a path to a
better future. Hope acknowledges the
significant obstacles and deep pitfalls along that path. True hope has no room for delusion. …hope
gives us the courage to confront our circumstances and the capacity to surmount
them.”
I’d like to add
here that to the oncologists, researchers, nurses and associated healthcare
professionals who battle around the globe to conquer brain tumours, we owe an
enormous debt of gratitude. From the
bottom of our hearts, thank you.
And so to the
last part of the equation.
SLIDE 31
A sunrise and a
moon.
As the mother of
a brain tumour patient, I often remind myself that when our day ends and we go
to sleep on this side of the world, a new day breaks on the other side of the
globe, where people are just waking up to a new day in their laboratories, a
new day in their surgeries and a new day in their wards and clinics. Likewise when those on the other side of the
world finish their day, we on this side are just beginning ours.
Through
alliances, partnerships, collaborations and coalitions, who knows what new
brain tumour treatments might be discovered when daylight breaks in various
corners of the world?
So even while we
sleep there is hope.
SLIDE 32
And so there you
have it. The equation is completed – with Hope.
And to finish off today, we’d like to play you a DVD of David M Bailey
performing one of his songs. By the way,
David will be returning to the
SLIDE 33
Thank you all for listening.
SLIDE 34
Important note.
Play
David Bailey’s DVD of
© Kathy Oliver, International Brain Tumour
IMPORTANT NOTE: The layman’s comments
in this presentation are not in any way meant to constitute medical or other advice
or recommendations. Regardless of
information appearing in a presentation such as this, medical professionals
should always be consulted before any decision is even considered (let alone
made) or any course of treatment is undertaken. Inclusion of the mention of
therapies, devices, treatment approaches and other information contained in
this presentation does not necessarily imply endorsement by the IBTA. This presentation has been compiled in good
faith. The author does not accept
responsibility for any inaccuracies or misinformation, errors or omissions in
or arising from this presentation.
Ref: SDBTTAstroFund 17Mar08 FINVER 10Mar08 2205