Media Statement: The Australian Brain Tumour Collaborative (ABTC)
The Australian Brain Tumour Collaborative (ABTC) makes the following statement regarding the Therapeutic Goods Administrations (TGA) publishing of Australian Register of Therapeutic Goods (ARTG) ID 428499 – VORANIGO (Vorasidenib)
https://www.tga.gov.au/resources/artg/438499
Whilst the ABTC foundations and committee members comprise of leading research, treatment and support specialists across the Australian brain tumour community, the ABTC does not promote individual entities. Statements reflect the ABTC’s commitment for better outcomes for patients and families through approved treatments. Individual ABTC foundations are available for further statements on behalf of their foundations. Contact details are below the statement.
About Us
The Australian Brain Tumour Collaborative (ABTC) aims to develop and convey a united national voice that provides consolidated and evidence based advocacy to governments, stakeholders and the Australian brain cancer patient, family and carer community. This advocacy seeks to clearly define key issues and national responses that achieve better support and outcomes for individuals, carers and families impacted by brain tumour in Australia. In particular, responses and actions to minimise the significant challenges the disease and treatments present to consumers from date of diagnosis and through the survivorship journey.
The Collaborative’s objectives are as follows:
• Identify and promote understanding of key gaps in services and support for people impacted by brain tumour.
• Promote integration, partnerships and information sharing within the national brain tumour sector that better supports people impacted by brain tumour.
• Promote patient-centred solutions to challenges associated with the survivorship journey for people living with brain tumour, drawing on evidence based research and lived experience.
• Individually and collectively advocate for better access to service coordination and ongoing supports for people with brain tumour and for the continuing research and clinical trials to inform prevention, treatment and care.
There are currently eight foundation member organisations of the Collaborative. These members include organisations with focus on patient support and survivorship, best practice clinical care and research interests.
STATEMENT
Patients living with low grade IDH-mutant gliomas face a wide range of significant challenges from the disease and from treatment. This disease is incurable, and patients live with the effects of the disease and its treatment for a prolonged period. Impacts from the disease make navigating health and support systems complex and often patients unique needs remain unmet.
Research, clinical trials and new treatment options for patients are critical to reduce the burden on patients, families, the health system, and society. VORANIGO (vorasidenib) provides a useful treatment for the management of low-grade glioma. The Australian Brain Tumour Collaborative notes this government approved new treatment option for Australian families.
The Australian Brain Tumour Collaborative calls for greater awareness and urgency of the need for ongoing research, clinical trials, support, and approved treatment options for the Australian brain tumour community.
ABTC Member Foundations – Contact List
Robert Connor Dawes Foundation (RCD)
Liz Dawes – liz@rcd.org.au / Dr Kim Wark – kimwark@rcd.org.au
Peace of Mind Foundation (POMF)
Rebecca Mallet – bec@peaceofmindfoundation.org.au
The Mark Hughes Foundation (MHF)
Prof Michael Fay – michael.fay@newcastle.edu.au
The Brain Cancer Group (TBCG)
Dr Jackie Yim – jackie@braincancergroup.org.au / A/Prof Michael Back – michael.back@health.nsw.gov.au
Cure Brain Cancer Foundation (CBCF)
Dr Hamza Anwer – hamza.anwer@curebraincancerfoundation.org.au
The Cooperative Trials Group for Neuro-Oncology (COGNO)
A/Prof Eng-Siew Koh / engsiew.koh@health.nsw.gov.au
The Psycho-Oncology Co-operative Group (PoCoG)
A/Prof Haryana Dhillon – haryana.dhilon@sydney.edu.au
Brain Tumour Alliance Australia (BTAA)
Catherine Hindson – enquiries@btaa.org.au / Craig Cardinal – chair@btaa.org.au