WFNO – ASNO Conference Public Session -12 May 2009

The European brain tumour patient and caregiver community: achievements, challenges and the pursuit of hope

Presentation by Denis Strangman, Chair, International Brain Tumour Alliance (IBTA)

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I would like to thank Professor Matsutani and the organisers for inviting me to make this presentation and for arranging for these proceedings to be open to the public.

There are many challenges facing the brain tumour patient and I am sure that many of you are aware of this.

Brain tumours attack the very essence of who we are. Brain tumours affect the physical, emotional and cognitive capabilities of a person.

I know all of this from my own personal experience, my late wife having been diagnosed with a glioblastoma multiforme brain tumour in 2000 and who passed away less than twelve months later, in 2001. We were married for 26 years.  Ever since then I have been an advocate for brain tumour patients and their families.

This is a journey that none of us ever volunteered to take.

European activities

The European brain tumour patient and caregiver group community is confronting these challenges and is achieving progress through various activities.

Through its two primary activities – the promotion of the International Brain Tumour Awareness Week (1-7 November 2009) and the Walk Around the World for Brain Tumours (1 January – 7 November 2009) - the International Brain Tumour Alliance unites patient groups in Europe (and other parts of the world) in a global and very public effort to raise awareness of this illness.

More than 30 European patient organisations relevant to brain tumours supported these two projects in 2008. Around the world, over 150 patient and professional groups and organisations were supporters.

Although I come from Australia I spend quite a large amount of my time in work involving the European sphere. In March, for example, I and my colleague Mrs Kathy Oliver, who was intending to make this presentation in Japan but unfortunately was required to remain in the UK, attended as observers at the meeting of the Brain Tumour Sub-Group of the EORTC in Brussels, Belgium.

In Europe there are three emerging issues which may be of interest to you: (1) discussion about government subsidisation of expensive chemotherapies, (2) a growing interest in the concept of “rare cancers”, and (3) the need for consultation with patients and their representatives about research and clinical trials of relevance to them.

Expensive chemotherapies

Many of the new therapies which might benefit cancer patients are very expensive. In countries such as the UK, where governments decide whether or not to subsidise these therapies, there is a growing discussion about how their health technology agencies (HTAs) can measure the cost effectiveness and value of these expensive therapies. Traditionally, the measurement formula has involved a calculation of the extent of survival gained from the therapy.

The IBTA is about to launch a project where we will encourage the evaluation agencies to consider the percentage increase in survival, as compared with the absolute extension. We believe this is more appropriate in the brain tumour context, where survival from a malignant primary brain tumour is notoriously short.

Rare cancers

Some of us who are involved with brain tumour advocacy work have realised that there can be benefits in joining with advocates for other cancers which are not one of the “majority” cancers such as breast, prostate, lung and colorectal cancers.

In the United Kingdom people associated with these less common cancers investigated the extent of their collective contribution to overall cancer mortality and discovered that they constituted 52% of all adult cancer mortality and so they have joined together under the name “Cancer 52”.

There is quite a lot of work taking place in Europe involving a specific focus on rare cancers and my colleague Mrs Oliver is collaborating with other European cancer advocates in progressing meetings and seminars about this subject and it would appear that some progress has been made within the European Union. Through our involvement we were able to nominate a brain tumour specific speaker for a high-level Pan-European conference in Brussels last year on rare cancers.

Involvement of patient groups

Those who are attending the scientific sessions of this conference will be aware that the brain tumour sub-group of EORTC – the European Organisation for the Research and Treatment of Cancer – has been responsible for very significant research into brain tumour therapies.

The IBTA has made representations to the sub-group for involvement in the processes by which clinical trials are designed. Why should a patient view be represented? The IBTA is affiliated with a very strong organisation called the European Cancer Patient Coalition (ECPC) and they have a slogan which incorporates this idea: “Nothing About Us, Without Us”. In other words, patients should be involved in the development of therapies and research projects which are supposedly for their benefit.

There is also an ethical need to counter-balance what is called the “scientific imperative”, i.e. the desire to research an unanswered question, regardless of all the implications.

Ingrida

I would like to conclude by telling you a little about a very brave and courageous brain tumour patient and advocate in Lithuania, which is a country in Central Europe. Ingrida passed away on 1 May and her funeral was last Monday.

A little over one year year ago, in April 2008, the IBTA received an inquiry from a young woman named Ingrida Blazyte-Byciuviene. I telephoned her in her home city of Vilnius and she later emailed me. She wrote:

“My short story is like this:

”I am 28 now. More than a year ago, I had my first generalised seizure and I was diagnosed with a brain tumour. I had my first operation on the 7th of March, 2007 and my second operation on the 12th of September, 2007.

“After my second operation, I decided to start organising support groups for people with brain tumours and to create an internet page for people with this problem and as there was almost no information in Lithuanian about brain tumours on the Internet till that. Now our page is getting more and more popular with visitors though it appeared only before Christmas, 2007 …”.

Our contact with Ingrida deepened and we invited her and her husband to assist with our display at the EANO brain tumour conference at Barcelona in 2008.

I would like to conclude by quoting from a presentation that my colleague Mrs Oliver made at a symposium held concurrently with the EANO meeting and in the presence of Ingrida:

“Attached is a photograph Ingrida sent me which was taken last year. Three ofthe people on this sailboat were, at the time, brain tumour survivors. … I called this photo the "Ship of Hope" photo.

“These photos, taken just last week, are of three courageous brain tumour survivors in Lithuania.   The man in blue is Stasys.  He is the father of two daughters and he was diagnosed with inoperable glioblastoma a few months ago.

“The man in the yellow tee shirt is Robertas. He was originally diagnosed with a low grade astrocytoma and on recurrence was diagnosed with GBM.  At the moment Robertas has no neurological deficits, he works, he brings up his two sons and lives a happy life.

”And last but not least, the woman in the dark shirt is Ingrida who is with us today.  We are extremely proud of Indrida's determined and courageous efforts... “

We pay tribute to this courageous young woman who, even though she herself had a brain tumour, used her intelligence and skills to assist other brain tumour patients in Lithuania.

Conclusion

While the story of Ingrida is sad, we should acknowledge that there is great reason to be hopeful and optimistic. In my short involvement of seven years of advocacy I have never before seen such a large number of promising new therapies being trialled. More and more specialists are also working in the area of brain tumours and the EORTC and other research organisations have a number of important trials in the planning stages. Furthermore, the priority given to brain tumours in the Cancer Genome Atlas Project has identified several new genetic characteristics to target.

Not everyone can be an Ingrida but we encourage all those who have the capacity to do so, to raise awareness about the challenges that a brain tumour diagnosis can bring, to raise funds for research, and to establish support groups for brain tumour patients and their families, similar to the Japan Brain Tumour Alliance, the Japan Paediatric Brain Tumour Network, and the Children's Cancer Association of Japan. 

Please encourage your organisations to join with the IBTA and to support its two main activities, the Walk Around the World for Brain Tumours and the International Brain Tumour Awareness Week, which will be held during 1-7 November 2009.

Thank you.