Presentation by Denis Strangman (Secretary BTAA), Brain Tumour Forum “Brain Tumours – What’s Going On …” Austin Health Neuro-Oncology and Brain Tumour Support Service, Wednesday, 2 November 2011.

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I would like to thank the John Cummins Memorial Fund, which assists the brain tumour support program at The Austin, and Dr Lawrence Cher and the brain tumour care coordinator Dianne Legge, for organising this Forum

Brain Tumour Alliance Australia, of which I am secretary, was established in late 2008 by a group of brain tumour patients and current and former caregivers. It is the only national advocacy organisation for people diagnosed with CNS tumours and their family and carers

There had been an earlier organisation called Brain Tumour Australia which I had helped establish in 2003 and chaired until 2005. That group had disbanded in 2008 and several of us believed that a new group should be established to fill the vacuum.

BTAA is Chaired by Matt Pitt who is a survivor of a Juvenile Pilocytric Astrocytoma and its committee includes a survivor of an oligoastrocytoma and various carers and former carers, like myself, my wife having died from a glioblastoma some years ago.

"Astro Boy"

When the GP told my wife and I that she had a “lesion” which looked like an Anaplastic Astrocytoma we had no clue what he was talking about. In fact, all we could think of was that one of our four sons in his childhood had been a great fan of “Astro Boy” and we tried to work out what the connection was!

That was the start of a long education process which is still continuing.

In one of our major activities BTAA imports copies of the 76-page Primer of Brain Tumours from the United States and distributes them for free to people who contact us via our website or the national Freecall number 1800 857 221.

Unlike many other groups our Freecall number is available seven days a week. I currently answer it and when I am unavailable our Vice Chair Susan Pitt answers it. Certain calls are forwarded on to MaryAnne Rosier who is interviewed in the “Brain Tumour” magazine available tonight. MaryAnne is a hospice volunteer and a trained LifeLine counsellor. She has had the unfortunate experience of having a brother and a sister who were both diagnosed with brain  tumours. The oligoastrocytoma survivor on our committee will also undertake healthcare consumer training in the New Year and will also be available to take calls. It is a peer support service.

We see BTAA as an advocacy, education, awareness-raising and support organisation.

One can divide the brain tumour community into several areas – those who deliver services, such as the neurosurgeons, oncologists, neurologists, pathologists, nurses, allied health professionals and so on.

There are also the scientists and researchers who are sometimes in the laboratory but might also be conducting clinical trials on brain tumour patients.

BTAA straddles both the brain tumour community itself and the general public, seeking to educate and inform and to raise awareness. We do not raise funds for research, believing that area is well covered, nor do we give funds for medical treatment or family assistance. We are fortunate to have a very good public health system in Australia and there are many non-government organisations active in the caring field.

Our emphasis is on advocacy.

Prime Minister and grey ribbon

Did any of you notice the Prime Minister in Parliament on Monday wearing a grey ribbon in her lapel to signify the commencement of International Brain Tumour Awareness Week?

Things like that don’t happen by accident. Our Vice Chair and her partner and their daughter spent the weekend fashioning 400 grey ribbons and attaching safety pins to them, packaging them with a note, and delivering them to Parliament House in Canberra. The Party Whips were contacted and a media release distributed.

It is lucky that we were able to squeeze in between the end of breast cancer awareness month and the start of Movember for men’s health.

In fact it is sometimes difficult for our voice to be heard. There are at least 200 different types of cancer and brain tumours appear about 17^th on the incidence tables but when you bring into play the burden of the disease and statistics about person years of life lost brain tumours start to climb in the tables.

Did you know, for example, that in Australia brain tumours are the second highest cause of death for children aged 0-14 years from all causes – second only to accidental drowning/immersion and the highest cause of death in this age group from cancer?

Brain tumours are also the highest cause of death from cancer in people aged 0 – 39 (an average of 120 deaths per year).

And that is our quandary. We could produce the most dramatic and heart rendering television commercials to help get these messages across but we have voluntarily restrained ourselves from going down that route.

Why? We are conscious of the distress this might cause to those patients and their loved ones who are living with this disease and who are seeking to maintain realistic hope.

Our voluntary restriction also makes it difficult to raise funds. We have to tread a fine line. We receive no funding from Governments or any cancer organisations.

Despite the Prime Minister’s wearing of a grey ribbon we do find it difficult to have our voice heard and for recognition to be given to the unique challenges of brain tumours.

There is this underlying attitude among Governments that it would be best if they just dealt with one large organisation representing all cancers and there is another more disturbing trend of governments and some health organisations claiming that prevention is the only answer.

Well, let me tell you that until we discover the causes of brain tumours there is no place for screening, early detection, or ways of preventing brain tumours. Those kind of things might be very relevant to breast, prostate, colorectal, and lung cancer but they are totally irrelevant to brain tumours. To screen for brain tumours you would have to give a brain scan to every Australian every six months and that is totally impractical.

And I am afraid that even a healthy lifestyle is not going to guarantee that you will not develop a brain tumour although I agree that following a healthy lifestyle when you have been diagnosed might play a role in enabling your immune system to cope better with your treatments.

More support needed

BTAA would like to see more emphasis placed on support for brain tumour patients and their families when they have been diagnosed and are receiving treatment.

The support group at The Austin is an excellent service in this area but it should be copied elsewhere.

There are about 1400 people who develop a malignant primary brain tumour in Australia every year but, according to a survey we conducted earlier this year, there are only eleven brain tumour care coordinators in Australia and many of these are very part-time or have to look after a range of cancers.

For example, the relevant care coordinator at Canberra Hospital also has to cover all gynaecological cancers, all musculoskeletal cancers, including bone cancers and sarcomas, and melanomas, as well as brain tumours. There is just no way the one person can develop and maintain their expertise in such a diverse area of cancers.

On the other hand, through a combination of government and private funding there are three breast cancer nurses in our region and they make a point of connecting with the patient from the moment of diagnosis.

BTAA put a case to the Federal Government for support for brain tumour care coordinators before the Budget this year but was unsuccessful. We will keep trying.

Another area in which we are missing out is in the allocation of funds by the National Health and Medical Research Council.

Lack of NHMRC funding

In 2010 the NHMRC provided $162 million for research into cancer. Brain tumours received $4.4 million, which is equal to 2.7% of all cancer research expenditure.

What we need to emphasise is the heavy burden that a brain tumour diagnosis generates.

You all know the roller coaster nature of the brain tumour journey.

What this often leads to is repeat visits to hospital. In 2008-2009 there were 5,000 brain tumour-related hospitalisations and in figures released recently by the Australian Institute of Health and Welfare brain tumour patients were responsible for an average length of stay of three weeks for palliative care in hospitals, compared with an average for all cancers of two weeks.

There is a big burden not just on the patient but on their family and caregivers and this is where extra support is needed.

I do not want you to go away thinking it is all doom and gloom. As well as being Secretary of BTAA I am also Chair of the International Brain Tumour Alliance (IBTA), which seeks to bring together the national brain tumour support and advocacy groups around the world. My co-director is Kathy Oliver from Surrey in the UK who unfortunately lost her 32 year old son to a GBM in August of this year after a seven-year journey. As Chair I am in regular contact with our colleagues overseas and in two weeks time I and Mrs Oliver will be attending the annual scientific meeting of the Society for Neuro Oncology in California.

The IBTA will have a display there and our magazine will be distributed free to all 1200 participants. This will be a chance to find out what is happening in the world of research and clinical trials.

I already know, for example, that there are at least 58 commercial research projects and possibly hundreds of investigator-led projects underway in hospitals and universities which are seeking to identify more effective brain tumour therapies. Papers will be given at that Conference identifying better ways of improving the quality of life of brain tumour patients and the Canadians will give me a copy of a new patient handbook they have written about low grade brain tumours and which BTAA will evaluate for importation and free distribution in Australia.

Cause for optimism

There are other developments which give cause to be optimistic. I have been heartened to learn of the introduction in Australia of the Gliolan method of fluorescence-guided neurosurgery. One Melbourne neurosurgeon has suggested that it enabled them to remove 25% more of a person’s brain tumour and most of us know that the best approach is to remove as much of the tumour as clinically possible in order to leave a smaller target for radiation therapy and chemotherapy.

But only 21 of the estimated 80 neurosurgeons who undertake brain tumour surgery in Australia have been trained in the procedure and only three hospitals currently provide it. The fluorescence material is not subsidised by the Federal Government and the cost of $3,990 has to be absorbed by the hospital or the patient. It also costs about $90,000 to buy the microscope attachment to carry out the procedure.

Brain tumour patients and their families cannot afford the luxury of waiting around for bureaucratic committees to deliberate at a snail’s pace on these new procedures. Evaluation and approval processes need to be expedited.

I am afraid that the “race is to the swiftest”. When I speak to people on the Freecall number one of the first things I try and tell them is that they have to develop “sharp elbows” so that they can elbow their way to the head of the queue.

If you are prepared to do the elbowing BTAA will continue to try and raise greater awareness among the general public, hospital administrations, those who hold the purse strings and those who make decisions about health care expenditure and approvals.

Thank you.