BTAA E-News Winter 2011.

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Brain tumour fact sheet: BTAA has updated the one-page fact sheet using new statistics it obtained from the Australian Institute of Health and Welfare. The fact sheet is part of BTAA's media kit. Brain tumours are the leading cause of death from disease in children 0 - 14 years and the leading cause of cancer death for persons 0 - 39 years. See Contact if you would like assistance with BT official statistics.

Brain Tumour Care Coordinators: BTAA provided a submission to the Federal Treasurer for the 2011 Federal Budget, calling for a greater recognition of the burden of the disease for brain tumours in health policy settings, and calling for funding for brain tumour care coordinators. Whilst the 2011 Budget focussed on additional funding for mental health and other important health needs it did not provide anything specific for brain tumour patients and their carers.
BTAA encourages all brain tumour health professionals, and advocates to actively work towards the provision for funding in future Commonwealth and State/Territory health budgets. Look through BTAA's submission (on our website at ) and you will see that the case is a strong one for the need for additional brain tumour care coordinators in every jurisdiction.

Members of the ACT Brain Tumour Support Group have initiated discussions with ACT Health and other health consumer groups and are looking at funding models appropriate to the ACT Health system. Our supporters elsewhere are encouraged to examine the statistical appendix contained in the BTAA Federal Budget submission, available on the home page of for supporting evidence of the special case for BTs. Please contact BTAA if you need assistance with preparing a submission on any brain tumour-related matter.
New South Wales: BTAA Secretary Denis Strangman and Vice Chair Susan Pitt self-funded attendance at the Brain Tumour Support and Education Forum, held at Sydney, 13 May 2011, where they provided a display table for BTAA and made new contacts with patients, families and health professionals. The sessions are now available at

Sydney City to Surf 2011: Become a brain tumour warrior and join the Cure for Life team in the 2011 City2Surf - email for more information. On Cure for Life – Several members of BTAA who attended the annual ball reported attending another successful event this year.
Pharmaceutical Benefits decision: After notifying its concern direct to Minister Roxon's office on 12 April about the Federal Government's decision to defer PBAC recommendations for subsidisation of new drug indications, BTAA has agreed that the Consumer Health Forum (of which we are a member) may quote BTAA as being supportive of its campaign against the decision. Although no brain tumour-relevant drugs are affected right now, other anti-cancer drugs and patients are affected and it might be our turn tomorrow or the next day.
ASCO: When told at the recent ASCO (American Society of Clinical Oncology) meeting in Chicago that his abstract about the ExCentric clinical trial came up first when the database of abstracts in the CNS tumour stream was searched, Dr Mustafa Khasraw joked that it must be because it was the “best” abstract. Dr Khasraw, formerly of North Shore Hospital and now at the Andrew Love Cancer Centre Geelong (Victoria), was apparently the only Australian lead author with an abstract among the collection of over 100 CNS abstracts. There were quite a few Australian authors for abstracts dealing with other cancers, particularly for studies of metastatic colon cancer and melanoma, but only one for CNS tumours. One hopes that Australian researchers will deluge the SNO meeting at California in November with progress reports about their work.
COGNO (Cooperative Trials Group for Neuro Oncology): We have been asked to mention that the 2011 COGNO Annual Scientific Meeting will be held from Saturday 6th August to Sunday 7th August 2011, in conjunction with the Macquarie Neurosurgical Research and Clinical Symposium at Macquarie University, Sydney. The Macquarie Symposium will be held on Friday 5th August and Saturday morning on the 6th August 2011, followed by the COGNO Annual Scientific Meeting from the afternoon of Saturday the 6th until lunchtime on Sunday 7th August 2011.  The Joint Macquarie-COGNO Neuro-Oncology Day on Saturday 6th August has been designed with a particular focus on brain tumours, ranging from translational science to clinical management updates and emerging technology. See: We note that Macquarie University Hospital is the home to Australia's first Gamma Knife and that the Leksell Gamma Knife Society Meeting will be held in Sydney in March 2012.

Educational forums: BTAA has had contact with a health professional who is keen to provide an educational day for brain tumour patients and families in a major Australian city. In the design of educational forums which will be attended by patients and their carers it is important to factor in an opportunity for these people to meet with each other in a small group setting to share their experiences and to not subject them to eight hours of continuous presentations from a podium. We have conveyed this suggestion to the organiser.
Consumer representatives: The concept of consumer representatives in the cancer environment is well established. They can help researchers in obtaining a patient and carer perspective. To avoid any suggestions of favouritism requests for nominees for this role should be made to the appropriate national disease-specific patient group. In the case of brain tumours this is Brain Tumour Alliance Australia which has a number of experienced consumer representatives available. A consumer representative should always be nominated by a relevant consumer organisation so that they have support should any issues arise.

Queensland: BTAA Chair Matt Pitt self-funded a visit to the Brain Tumour Support and Education Forum - Brisbane, held during May, where he met BTAA Committee member Geoff Isaac and other contacts. See:

Victoria: Grey Matters - A new support group for those living with a benign and low grade brain tumour. Grey Matters is affiliated with Cancer Council Victoria and associated with Melbourne Hospitals (including Royal Melbourne and The Austin). Meets 3rd Monday of the month at the Carlton North Library. Next meeting 20 June at 7pm for 7:30pm. Contact Janet - 0422 639 993.
Royal Melbourne Brain Ball Gala Dinner - 29 July 2011 - Sold Out! Enjoy this big night out.

Other BT support groups are listed at:

Worldwide advocacy: International Brain Tumour Awareness Week. 30 October - 5 November 2011. Brain Tumour Alliance Australia will again be part of the event.
Australia and South Africa: BTAA secretary Denis Strangman, who is also Chair of IBTA, has been asked to visit South Africa to assist a brain tumour patient and her husband to establish a national brain tumour support and advocacy group in that country by travelling to the major cities and holding awareness-raising meetings. South Africa has about twice the number of brain tumour patients compared with Australia but many are very poorly served. Denis, who is a retired public servant on a service pension, is an unpaid volunteer in his roles as Chair of the international group and secretary of BTAA. Some funding has been obtained within South Africa for the project (including from SA Merck/MSD) and Rotary Clubs will help with accommodation but Denis needs to find his return airfare and travel insurance from Australia to Johannesburg. BTAA has no spare funds to assist this worthwhile project. Do any of our readers have contacts among Australian companies with ties to South Africa who could be approached for help? If so, please contact Denis at:
Spreading the message: A current brain tumour patient and their carer were recently examining the brochures and information on the pamphlet ranks at a major cancer treatment centre in Sydney but could see nothing relating to BTAA and reported this to us. We have since sent copies of our brochure to the Centre. To mail out a selection of material to all key brain tumour specialists and treatment centres in Australia costs about $500 each time, simply for the postage. Can you help with a donation for this task? The brochures tend to get depleted and we need to do such mailouts with fresh material every six months or thereabouts. If you notice that our brochures are not displayed at your treatment centre phone the BTAA Freecall number: 1800 857 221
Publications: The consumer version of the Clinical Practice Guidelines for adult gliomas was launched in Sydney at the recent Forum and can be downloaded from: or a hard copy obtained by phoning the Cancer Helpline on 13 11 20. Don’t forget that BTAA will post a free copy of the 76-page “Primer of Brain Tumors” to all newly-diagnosed brain tumour patients and their families in Australia. Phone the BTAA Freecall number on 1800 857 221.

Gliolan: The BTAA has been asking questions why Australian neurosurgeons have not started using 5-ALA as a means of identifying tumour cells but now they might have a chance to do so. According to news released this week: “A new drug which aids neurosurgeons to better visualise and operate on brain tumours that have a poor prognosis, high grade gliomas, will be available in Australia under a special access program later this year. Specialised Therapeutics Australia Ltd has signed a binding term sheet with German company photonamic GmbH and Co. KG to in-license the drug Gliolan, which is used in brain tumour surgery. The drug  - which selectively induces  fluorescence in brain tumour cells to assist surgeons in defining and resecting gliomas  – will be available to Australian neurosurgeons from September 2011 under the Federal Government’s Special Access Scheme.” See:

 Commonwealth Bank of Australia Local Hero:

Edited extract from the media release in April 2011: “A finalist in the 2011 ACT Young Australian of the Year awards, Matthew Pitt was named a Commonwealth Bank Local Hero.  The bank nominated one person from each state or territory for the award, and Matthew is the ACT ‘face’ of the campaign.  Matthew’s award is in recognition of his voluntary work chair of Brain Tumour Alliance Australia (BTAA). Through being part of the CBA Local Heroes campaign, Matthew is seeking to extend the range of BTAA services available to brain tumor sufferers. Increasing understanding and support for sufferers is also a priority for him, to honor the work and commitment of those who have not survived.  In recognition of Matthew’s achievements and to ‘launch’ his Commonwealth Bank of Australia Local Hero campaign, BTAA held a celebration function in April 2011. In attendance were members of the ACT BT support network and supporters including Andrew Leigh, MP for Fraser, and a member of the Commonwealth Parliamentary Brain Tumour Awareness Group. Apologies were received from a number of members of this group including co-conveners Senators Bilyk (Tas) and Ryan (Vic). Senator Bilyk sent a letter of congratulations. Thanks to BTAA Committee member MaryAnne Rosier for hosting this event. (Matt is current off-line for a few weeks from the BTAA Chair role while in the final weeks of study towards a Masters in Health Policy, as well as his day job. Good luck Matt.)

The CBA promotion and video of Matthew can be seen at: 

‘If I made a list of the most terrible things that could happen to someone, a malignant brain tumour would be very near the top. Any form of cancer can be devastating, but brain cancer carries its own special horror. Your brain is the foundation of your personality, your intellect, your emotions, your motor functions – the very basis of your being’.

- American psychologist, Dr Ben Williams, who was diagnosed with the most malignant of brain tumours in 1995. He is not only still alive but has written a book describing how he beat his disease.

A call for help: BTAA needs your assistance. Since its inception in 2008 BTAA has received no Government financial assistance and only limited support from corporate organisations.
BTAA's audited accounts are available to members upon request and our annual turnover is less than $5,000. BTAA funding is provided by small donations from supporters to cover expenses like web site hosting, postage for information materials to the newly diagnosed and packaging. The BTAA committee members are all volunteers, and there is no paid administrative staff or offices. If you are able to make a donation of $25 it will enable BTAA to provide information to a newly diagnosed person and their family. A donation of $380 will pay for BTAA’s web site hosting fees for the year. Other donations will go towards the cost of about $1,800 to reprint the BTAA brochure to be provided to health facilities around Australia.

Donate to Brain Tumour Alliance Australia Inc: Account name: Brain Tumour Alliance Australia. Commonwealth Bank. BSB: 06 2900. Account Number: 10603153. Or send a cheque to: The Treasurer, BTAA, c/- PO Box 76, Dickson, ACT, 2602.

Thanks for your ongoing support. Please send feedback or ideas for the Spring 2011 bulletin to

Susan Pitt
a/g Chair

Brain Tumour Alliance Australia
Denis Strangman