Related Links

Brain Cancer Patient Education and Support Forum 2019

Held in conjunction with 12th COGNO Scientific Meeting at ICC Sydney October 2019.

Link to videos available shortly.

Brain Tumour Support and Education Forum May 2018

Held at the Wesley Centre in Sydney in May 2018.

Links to videos here.

Gliolan

GLIOLAN® (aminolevulinic acid hydrochloride) is an orally administered drug used for the visualisation of certain brain tumours (particularly glioblastoma multiforme) during tumour surgery.

Gliolan® FAQ

Avastin

Avastin (Bevacizumab) has been listed on the PBS since 1 August 2019. The Health Minister, Mr Greg Hunt made the announcement in Canberra on 28 July 2019. 

The Pharmaceutical Benefits Advisory Committee (PBAC), recently recommended that Australians with recurrent and refractory glioblastoma (GBM) - a common and aggressive form of brain cancer, should have access to Avastin via the Pharmaceutical Benefits Scheme (PBS) regardless of their ability to pay.

The PBAC and Roche, the manufacturer of Avastin, have acknowledged the large number of submissions from the brain cancer community, which played a major role in securing the recommendation.

The PBAC acknowledged that treatment options for patients with recurrent GBM are currently extremely limited, and no new therapies or treatments have been approved and placed on the PBS since Temozolomide in 2007, which only provides an effective treatment for a proportion of patients, and statistical improvements in Progression-free Survival (PFS) and Overall Survival (OS).

Avastin is not seen as a cure either, but it may provide relief from some symptoms, and may potentially improve PFS and OS as well. In our submission to the PBS, BTAA noted that Avastin is not without significant side effects, and has not always produced positive outcomes. BTAA understands the Avastin PBS approval will help patients with relapsed or recurrent glioblastoma that have progressed on, or are intolerant to, temozolomide.

Selected useful web resources

• Health Direct (a FREE* 24-hour telephone health advice line staffed by Registered Nurses to provide expert health advice. BTAA has not yet evaluated the nurses' level of knowledge about brain tumour-specific health challenges).
• Brain Tumour Healing Program  Canadian website ( Finding Light in the Darkness: Reclaiming Wholeness after a Brain Tumour, A "Skills for Healing" retreat documentary) 

International BT organisations  

• International Brain Tumour Alliance - International magazine provider for Australian BTAA subscribers.
• The American Brain Tumour Association - Adult primer provider
• The Brain Tumour Foundation of Canada - Paediatric resource provider  
• The UK Brain Tumour Charity 
• The Collaborative Ependymoma Research Network (CERN) -  and handbook

Brain tumour research organisations

• The Australian Genomics and Clinical Outcomes of Glioma (AGOG) 
• Brain Cancer Biobanking Australia  
• The Brain Centre Collaborative 
• The Brainchild Foundation
• Brainstorm
• Brainlink Services Inc 
• Brizbrain and Spine Research Foundation 
• The Brain Cancer Group (formerly SNOG)
• The Cooperative Trials Group for Neuro-Oncology (COGNO) 
• The Cure Brain Cancer Foundation 
• The Kolling Foundation
• The Lowy Cancer Research Centre
• The Mark Hughes Foundation  
• Neuro Oncology Information Network (NOgIN) 
• The NSWCC Grey Matters and Brain Cancer Action
• The Queensland Brain Institute 
• Royal Melbourne Hospital Neuroscience Foundation
• The Tony Lucas Research Grant 

Australian Brain Tumour related consumer groups 

• Brain Child Foundation (paediatric support)
• The Cure Starts Now
• Dainere’s Rainbow Fund
• The Robert Connor Dawes Fund
• The James Crofts Hope Foundation
• The Peace of Mind Foundation

General Cancer Groups

• Children's Cancer Australian Government Website
• The Telethon Kids Institute (WA) 
• The Warwick Cancer Foundation
• The Starlight Foundation
• Livewire - Starlight Foundation social media group Online community designed just for young people living with a serious illness, chronic health condition or disability, and their families. It is a safe online space where members can connect and share experiences with others who understand what they are going through.
• Redkite
• The Make a Wish Foundation
• The Cancer Council of Australia
• The Cancer Research Foundation 
• The Children’s Cancer Institute
• The Children's Leukaemia & Cancer Research Foundation (Inc)
• The Children’s Research Foundation
• Mesothelioma Hub

BTAA is developing a register of Australasian professionals with a professed interested in brain tumour treatment.

We offer no rating as to who might have more experience or knowledge from among these specialists but we do encourage patients and caregivers to ask their initial specialist extensively about their interest and experience in the area that is relevant for your care. It is also important to remember that you have a right to a second opinion.

Developing a list of specialists is a very difficult task because many of the oncologists, for example, do not specialise solely in brain tumours but work in other cancer fields and many of the neurosurgeons undertake other neurosurgery apart from craniotomies for brain tumours.

A list of Royal Australasian College of Surgeons is available here.

Search for a medical oncologist here. (Information is currently being updated)

Health Complaints Commissioners

Any complaints about the medical service you receive should be directed to your local health complaints commissioner.

Links to the websites for health care complaints commissioners in Australia and New Zealand are available here:

• Australian Capital Territory
• New South Wales
• New Zealand
• Northern Territory
• Queensland
• South Australia
• Tasmania
• Victoria
• Western Australia

beyondblue Directory of Medical and Allied Health Practitioners in Mental Health

Click here to access this directory. Depression can be a problem associated with any serious illness. Please note the disclaimer on the BeyondBlue website.

Last Update 29 April 2019

Email enquiries@btaa.org.au for suggestions to update this list and to let us know about new resources.