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Senate Inquiry shines a light on Australia’s forgotten rare cancer community

2 min read

Rare and less common cancers account for over one-third of all cancer deaths in Australia, however despite these high numbers, people with rare cancers simply don’t receive the same level of support, or access to the same treatment options, as those with more common cancers, and they pay for that inequity with their lives.  

Chief Executive of Rare Cancers Australia (RCA), Christine Cockburn, appeared at yesterday’s Senate Inquiry into equitable access to diagnosis and treatment for individuals with rare and less common cancers including neuroendocrine cancer.   

At the inquiry Cockburn intended on tabling RCA’s response to the Inquiry’s Terms of Reference, outlining reasonable and rational steps towards achieving equitable access for all Australians to cancer diagnostics, treatments and support – and making things fair for rare.   

“It is the fundamental right of every Australian with an RLC cancer to have access to the best treatment, at the right time, at an affordable price. It’s time to level the playing field,” said Cockburn.   

“There are right now a number of innovative, targeted treatments available for patients with common cancers that could be life-extending for people living with rare cancers, but there are issues around equity of access that must be addressed.”  

The RCA submission highlights some significant barriers to equitable access for people with rare cancer including late, protracted diagnosis due to insidious symptoms, absence of screening programs, paucity of experts with knowledge about rare cancers, geography and high out-of-pocket costs.  

“These challenges require diverse policy solutions, but we cannot allow for that to be a barrier to action,” added Cockburn.  

“We need to improve outcomes for all people living with cancer and to do so we must evolve our systems, delivery frameworks and funding mechanisms to ensure research continues and emerging therapies can be translated to the clinical setting and to patients equitably, swiftly and affordably.”  

“It’s time for us to act and make a real difference for people with rare cancers. Without action on equity, we cannot hope to have an impact on improving RLC patient outcomes and experience in the future,” Cockburn concluded. 

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Menchie Khairuddin is a writer Deputy Content Manager at Akolade and content producer for Third Sector News. She is passionate about social affairs specifically in mixed, multicultural heritage and not-for-profit organisations.


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