Dialog Box


Rare Cancers Australia reviews improvements for rare cancer patients in new report

11 Sep 2018 at 12:00 AM
  • Rare Solutions: A Time to Act – Progress Update launched today showcases how far we’ve come: Government, industry, clinicians, and patients have acted on a vision to improve outcomes for 52,000 Australians diagnosed with rare and less common (RLC) cancers, and the 25,000 who die, annually. 
  • Highlights the need to continue working on Rare Solutions: A Time to Act report recommendations: clinical trial structure and funding, flexibility for RLC cancers in policy access issues, and greater collaboration and data collection. 
  • Genomics will be the future of cancer care; it is critical that Australia has a policy and regulatory environment that promotes patient confidence in evolving genomics research.

CANBERRA, 11 SEPTEMBER 2018: Rare Cancers Australia (RCA) will today host its annual CanForum event in Parliament House, with a focus on the importance of embracing health innovations and technology to improve outcomes for Australians living with rare and less common (RLC) cancers. Expert speakers in artificial intelligence, bioethics and blockchain will converge on Canberra.  

Today, RCA will also hand down the hotly-anticipated Rare Solutions: A Time to Act – Progress Update a report on the major progress made in RLC cancers in the last 12 months, following the launch of the landmark report Rare Solutions: A Time to Act in August 2017.

The initial report tabled a series of recommendations needed to even the playing field for RLC cancer patients. Key to success was the fact that the report was developed in consultation with several key stakeholders, including clinicians, patients, health economists, the Australian Department of Health, the Pharmaceutical Benefits Advisory Committee (PBAC), the Therapeutic Goods Administration (TGA), and the pharmaceutical industry.  

The report resulted in immediate action from the Hon. Greg Hunt MP, Minister for Health, who called for a commitment to identifying a new PBAC process for pan-tumour assessments and announced 20% of medical research funding made possible via the Medical Research Future Fund (MRFF) would be earmarked for research into RLC cancers.

Rare Cancers Australia CEO Richard Vines said, “Since the release of Rare Solutions in 2017, there has been unprecedented research funding for RLC cancer patients, and strong champions for the cause on all sides of Parliament.”

The most notable commitments to RLC cancers to date are the funds flowing from the MRFF and investment in the Australian Genomic Cancer Medicine Program (AGCMP) totalling $248 million and $50 million over five years respectively. Mr Vines recognises there is still more to do to ensure other funding mechanisms like the NHMRC appropriately match research dollars to proportion of disease burden.  Currently RLC cancers account for 51.7% of total cancer burden in Australia but receive just 8.2% of total National Health and Medical Research Council cancer funding.

The report also outlines the opportunities becoming available to RLC patients in genomic research, an area of focus at this year’s CanForum. Due to our evolving understanding of the molecular drivers of cancer, research into rare tumours is now more accessible than ever before. These great medical discoveries have been matched by an ambitious strategic funding plan via the Australian Genomics Mission, and it is essential the policy and regulatory environment aligns to facilitate the adoption of genomics and precision medicine.

The challenges for RLC cancer patients exist around four main areas: research and development; collaboration and data collection; registration and, reimbursement.  All are challenges addressed in the Rare Solutions: A Time to Act. This report as well as two recent independent Senate inquiries provide a roadmap for positive change and RCA encourages a continued focus on these solutions to make sure Australia is fair for rare.

The report can be viewed online here


Media contacts:

Kath Kissell                  
M: 0408 408 562            

About Rare Cancers Australia 
Rare Cancers Australia (RCA) is a charity whose purpose is to improve awareness, support and treatment of Australians with RLC cancers. RCA was established by Richard and Kate Vines after experiencing first-hand the challenges of an RLC cancer diagnosis and realising what little support and treatment options there was available to Australian patients.

1. Australian Institute of Health and Welfare. Cancer Compendium: Information and Trends by Cancer Type. 2018. Retrieved from

Category: RCA Events