BTAA E-News Spring 2011

BTAA E-News Spring 2011

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Dear friend,

Please find below the Brain Tumour Alliance Australia (BTAA) E-Newsletter for Spring 2011.

Advocacy, awareness raising, and service provision

IARC report into mobile phones and glioma noted by Parliament: In July this year, Federal Senator and brain tumour survivor Catryna Bilyk successfully moved a motion in the Senate to note the International Agency for Research on Cancer reports statement that electromagnetic radiation from mobile phones are possibly carcinogenic to humans and that heavy usage could lead to a possible increased risk of glioma. The Senator noted that methods to reduce exposure included limiting call times, preferentially using landline phones, and other practical measures. Senator Bilyk is Co-Chair with Senator Scott Ryan of the Federal Parliamentary Brain Tumour Interest Group. The motion can be accessed online ( www.aph.gov.au/senate/pubs/daily/2011/070711.htm). Although scientific consensus is far from reached on the topic, the possibility that mobile phones contribute in any way to an increased risk of brain tumour formation is sufficiently concerning to warrant precautions such as using hands-free headsets, and continuing further studies into the association.

Inquiry into the Governments administration of the Pharmaceutical Benefits Scheme (PBS): In July this year, Matt Pitt (Chair), Denis Strangman (Secretary) and Renee Hindson (brain tumour survivor) made a submission and gave testimony on behalf of BTAA to the Senate Finance and Public Administration References Committee into the matter of Ministerial discretion in the PBS ( https://senate.aph.gov.au/submissions/comittees/viewdocument.aspx?id=faca5900-c2e1-480e-a7ea-7ecad19091dc). Hansard transcript from the testimony ( www.aph.gov.au/hansard/senate/commttee/s177.pdf; pg 43-49), and the Committees report ( www.aph.gov.au/senate/committee/fapa_ctte/pharma_benefits_scheme/hearings/250711.pdf ) are now available online. BTAA expressed concern that listing of future pharmaceuticals for brain tumour patients may be delayed. BTAA also made the case that the relatively small numbers of brain tumour patients with each of the 120 or so types impeded conducting clinical trials, that treatment outcomes for brain tumour patients in general remain very poor compared to improvements for most other cancer patients in the past twenty years, and that any promising improvements in survival or quality of life in a Phase II trial should allow a treatment or services listing on the PBS or MBS, on the proviso that the pending Phase III trial results will determine whether it remains subsidised. A similar process has occurred in other countries, most notably with Avastin in the USA where its approval for glioblastoma by the USFDA allowed patients with health insurance to be subsidised for its cost. BTAA also stated that the recent decision to not list Avastin in Australia in part on the basis of insufficient improvements in quality of life was not sufficiently explained by the PBAC, as reports recommending not to list a medicine are only made available to the applicant and the Minister. In particular, what would be a sufficient improvement in quality of life for patients with glioblastoma? How would it be measured and what is the benchmark? BTAA advised in terms broader than administrative arrangements for the PBS, that any expert committees advice to the Minister to not recommend subsidising a particular pharmaceutical, medical service or device would benefit from being more transparent to the public and specific.

International Brain Tumour Awareness Week 2011: BTAA is participating in the IBTA International Brain Tumour Awareness Week (30 October 6 November 2011), with the aim of co-hosting or supporting activities in most States and Territories during the week. A number of events are planned to be held in Australia, including a brain tumour Forum on 2 November at The Austin Hospital in Melbourne. Contact Di Legge for further information ( dianne.legge@austin.org.au). BTAA would also like to hear from other patients, caregivers, medical professionals, or any others interested in participating in the Awareness week. Please either email chair@btaa.org.au, phone Chair Matt Pitt directly (0420 804 828), or phone the BTAA Freecall number (1800 857 221) (note that a calling fee applies from mobile phones).

Wear a hat for a day for BTAA: BTAA will also launch its inaugural annual 'Wear a hat for a day for BTAA' during the Awareness Week, and the official launch will be held at The National Press Club in Canberra on Thursday 3rd November. The aim of the 'Wear a hat' campaign is to raise much needed funds for BTAA to continue its support and advocacy work for all people and their families diagnosed with a brain tumour in Australia. Details on how you can support this event will be posted on the BTAA website (www.btaa.org.au) soon. If you have any enquiries relating to the event please email BTAA Principal Fundraiser MaryAnne Rosier (fundraising@btaa.org.au).

Patient and caregiver information days

Brain Tumour Patient and Care-giver Education Day at Hobart: Noting how patients valued the Cancer Institute NSWs brain tumour patient information day earlier this year, Sonya Wilson, a Clinical Nurse on the Tasmanian Neurosurgical Unit at the Royal Hobart Hospital (RHH), decided to host an inaugural brain tumour patient and caregiver day at RHH on 26 August. The day was well attended, with 35 attendees, comprising of patients, caregivers, and health professionals listening to the seven speakers of the day. Health professionals each presented on Neurosurgery, Radiotherapy, Chemotherapy, Nursing, Neuropsychology, and Palliative Care, and BTAA Chair Matt Pitt gave a presention from the former patient and peer-support perspective. Participants rated the day as being very useful in the feedback forms provided to them, with one representative response being: I would attend again and will recommend it in the future. Given its success, Sonya is planning on making the day into a regular event, which is to be commended. Although time consuming, such days provide patients and caregivers the opportunity to ask more free-ranging questions from a variety of specialists and to hear more detailed descriptions of treatment options and services, prospects for future advances in treatment, as well as the views and experiences of fellow patients. Contact Sonya on (03) 6222 8466 if you would like further information about the day or wish to enquire about future events. One theme which stood out in the feedback forms was that participants were eager to hear from the patient and caregiver perspective. BTAA also attended the QLD Cancer Councils and Cancer Institute NSWs brain tumour patient information days earlier in the year during Brain Cancer Action Week, and can attest that both forums were strongly attended and greatly appreciated by patients and caregivers.

Peer support

Grey Matters: Recently, a group of patients and survivors in Melbourne established a peer-support group specifically for patients with low grade tumours. The group is called Grey Matters, and meets at the Carlton Library at 7:30 9:30 pm on the third Monday of every month. An article about the group was published in the Melbourne Leader in July ( http://melbourne-leader.whereilive.com.au/news/story/carlton-support-group-for-brain-tumour-patients ). One of the founders of the group, brain tumour patient Samantha Wright, also established the website www.braintumourahoyhoy.org as a place to share stories and information, and receive support. For further information, contact Samantha by email (braintumourahoyhoy@gmail.com). While the unmet supports needs of patients with higher grade tumours and their caregivers is a pressing, fundamental concern, it is all too easy to overlook the needs of patients with low grade brain tumours and a support group specifically for these patients appears to be an Australian first and is a great initiative. There is a very good online discussion group (www.astrofund.org.uk) hosted from the UK for patients with low grade gliomas and their caregivers.

Treatment advances, clinical trials, and other medical research

Gliolan (5-ALA) fluorescence guided resection in brain tumours: Specialised Therapeutics Ltd have filed for Orphan Drug Designation at the TGA for the photosensitiser Gliolan (5-ALA) when used to assist surgical excision of high grade glioma. In the meantime, Specialised Therapeutics Ltd are conducting a neurosurgical training course on the technique at Royal Melbourne Hospital, led by Prof Stummer from the University of Dusseldorf. A Press Conference will be held on 20 September. Further discussion can be found at the website ( www.specialisedtherapeutics.com.au). Contact Luke Gerrick, Product and Business Development Manager (03 9859 1493) for more information about Gliolan. In published papers, the technique is stated to be especially useful for increasing the extent of targeted resection for high grade glioma (e.g. See Stummer et al., 2006. The Lancet Oncology. 7[5]; 392-401), which is very heartening given the very strong evidence that the extent of resection is predictive of prolonged progression free survival for this tumour type.

FET/PET imaging: On the subject of exogenous agents to better detect tumour tissue, the artificial amino acid tracer [18F]fluoroethyl-L-tyrosine (FET) in combination with Positron Emission Tomography (PET) imaging has been shown in preliminary studies to be of assistance in the imaging of tumours, and is particularly effective in resolving the margin of low grade tumours which otherwise may appear identical to brain tumours on conventional MRI scanning with gadolinium contrast (e.g. see Lau et al., Journal of Clinical Neuroscience. 2010. 17[1]:43-49). Professor Rod Hicks from Peter MacCallum informed BTAA that patients may receive a supply of FET for use in a PET scanning service suitable to them in Australia. Ideally, patients in Australia would have the option to easily access both 5-ALA guided neurosurgery as well as FET/PET imaging. Professor Hicks can be contacted at (03) 9656 1852. An article about the use of FET tracer was included in the IBTA magazine "Brain Tumour" which was recently distributed to BTAA contacts.

Tocagen Inc and Toca 511, Toca FC: In a multi-centre Phase I/II clinical trial, patients with recurrent Grade III and IV glioma receive a stereotactic intratumoural injection of Toca 511, a replicating retroviral vector containing the cytosine deaminase gene, followed by oral dosing of Toca FC (flucytosine in an extended release formulation) four weeks later and thereafter monthly for up to six months. Cytosine deaminase converts flucytosine to the cytotoxic drug 5-fluorouracil, which induces apoptosis (programmed cell death) in affected tumour cells. The selectivity of the approach lays in that only dividing cells will incorporate retroviral vector, and its promise lays in the fact that as the vector is replicating there is a potential for ongoing, stable control of tumour cells. The study is open to patients aged 18 or over with equal to or less than 9 cm squared in the greatest cross-sectional area, although other exclusion criteria apply. The trial sites are confined to the USA at this stage, but Tocagen informed BTAA that Australian patients are more than welcome to participate but that travel expenses will not be reimbursed. The trial is already underway but will continue recruiting new patients until the end of the year. For more information about this study and a complete listing of inclusion/exclusion criteria, and a patient enquiry form, see: www.tocagen.com/site/c.quIYL6MOJrE/b.6116599/k.9D00/Clinical_Trials.htm The USA clinical trials website Clinicaltrials.gov also contains a description of the trial ( http://clinicaltrials.gov/ct2/show/NCT01156584?term=Tocagen&rank=1 ).

CABARET trial (ACTRN12610000915055): The central clinical trials repository in Australia is the Australian New Zealand Clinical Trials Registry (www.anzctr.org.au), which contains a Trial Search function and an advanced search options where you can select by disease (i.e. cancer) and location (i.e. brain). Nevertheless, it can be difficult to know what to search for. One promising trial for patients with glioblastoma multiforme is CABARET, which is a two-arm randomised trial comparing Avastin to Avastin and Carboplatin and is intending to recruit 120 patients over the next 12 - 18 months (www.anzctr.org.au/trial_view.aspx?ID=335731). It is running from around 18-20 sites across Australia, but unfortunately not all regional hospitals are included. Contact Kate Sawkins on (02) 9562 5374 for more information. There are many other trials listed on the clinical trials registry for a variety of brain tumour conditions, and it is well worth seeing if a trial suits your needs. Patients and caregivers can be reassured that clinical trials have stringent quality control measures and provide an excellent standard of care to all participants.

The Cure Starts Now: Indefatigable Ren Pedersen, Director of the Australian branch of the Cure Starts Now and father of Amy who passed away from a diffuse intrinsic pontine glioma (DIPG) two years ago aged only 9, raised funds this year to support a grant to Dr David Ziegler of the Children`s Cancer Institute of Australia for Robotic screening for novel therapies for diffuse pontine gliomas. Because of an almost exclusive incidence in children and because of the brain stem's role in sustaining vital bodily functions, DIPG is regarded as one of the most challenging of all brain tumours types. The project will involve collecting DIPG samples from patients across Australia and from overseas and using automated machinery to simultaneously screen thousands of small novel molecules for their anti-proliferative and pro-apoptotic activity. The aim of the project is to identify promising candidates and up-scale the work to hundreds of thousands of small molecules to find those most efficacious against DIPG in vitro, and then assay these for anti-DIPG activity in vivo with mice carrying DIPG xenografts. Ren is a model of persistence and is a credit to Australia and the brain tumour community as a whole. Further details can be found at: www.thecurestartsnow.org/australia/

Care coordination and multidisciplinary teams: Apart from technological advances, brain tumour patients would greatly benefit in the here-and-now if care coordinator positions were established and multi-disciplinary teams were routinely offered to them. There is obvious potential for a synergistic benefit from the provision of both services, and for the past year BTAA has presented the case to governments for establishing ongoing care coordinator positions specifically for brain tumour patients. BTAA continues to advocate to governments at the Commonwealth and State/Territory level to establishment ongoing, designated brain tumour care coordinators. For example, see the results of a survey conducted by BTAA and our submission to the Federal Government, both available on the BTAA website (www.btaa.org.au).

Corporate governance

Recent donations: BTAA has recently received very useful donations from two Canberra-based charities which will go towards supporting its national, 7 days-a-week Freecall number and free distribution of patient support materials to newly diagnosed patients and their caregivers. BTAA receives no funding from governments or cancer organisations, instead relying on the generosity of its supporters and the unpaid and often self-funded work of its committee members.

BTAA AGM: The AGM of Brain Tumour Alliance Australia will be held in Canberra on 21 September and all financial members will have received notification by post. If you wish to join or to donate to BTAA please visit www.btaa.org.au for further information. One of the matters to be discussed at the AGM will be an amendment to our rules to satisfy the requirements of the Australian Taxation Office so that we can be granted tax deductibility status.

Thank you for reading, and please feel free to contact BTAA to discuss any matters relating to brain tumours, peer-support, advocacy, or service provision.

Matthew Pitt (Chair)

Brain Tumour Alliance Australia
Email: chair@btaa.org.au
Phone: 0420 804 828

Denis Strangman (Secretary)
Brain Tumour Alliance Australia
Email: secretary@btaa.org.au

Postal Address: PO Box 76, Dickson, ACT, 2602, Australia.
Telephone: (02) 6247 0632

Brain Tumour Alliance Australia Inc is a not-for-profit organisation run by brain tumour patients and current and former caregivers. It is currently considering an application for tax-deductible gift status for the first time. It is incorporated in the ACT (AO4837), ABN 97 733 801 179. You can download a membership form for BTAA from www.btaa.org.au/MembershipForm.htm

Note: The recipient addresses in this email are hidden for privacy reasons. If you do not want to receive updates from BTAA in the future please contact: chair@btaa.org.au

BTAA is also on Facebook and Yahoo Groups: You can join in discussion and follow announcements from the BTAA Facebook page (Brain Tumour Alliance Australia), and through the Yahoo Group Account for BTAA (http://health.groups.yahoo.com/group/btaa).