Every week in Australia 1,000 people are diagnosed with a rare or less common form of cancer, known as an RLC. A rare cancer is defined as a cancer that has less than 6 incidences per year per 100,000 of the population; a less common cancer is one occurring between 6 and 12 times per year per 100,000.
But don’t let the term rare fool you. Taken together, rare cancers are quite common. In fact, each week three times more people are diagnosed with an RLC than with bowel cancer, Australia’s second largest cancer condition.
But until 2012 – when Rare Cancers Australia (RCA) was established by Kate Vines and husband Richard – the 52,000 people diagnosed with an RLC each year had no Health Consumer Organisation in Australia to advocate on their behalf.
RCA has been instrumental in creating a patient community, patient support programs, and fundraising events and campaigns that help to fund treatment and research for people affected by rare cancers.
One of the most important initiatives of RCA has been to establish the Patient Treatment Fund which helps patients gain access to non-government funded medicines.
Central to RCA’s mission is early detection and testing for rare and less common cancers. Pathology is very much central to that project says Richard Vines, CEO.
‘When we talk about rare cancers, sometimes what we’re talking about are variations of well-known cancers, like leukaemia or brain cancers.
‘But being rare doesn’t mean they’re unknown and pathology is really important in picking up those conditions early and getting treatment started to improve medical outcomes.’
In addition to its philanthropic and medical research-based activities, RCA has established a knowledge hub called KnowledgeBase, allowing patients to navigate rare cancer specialists, treatment centres, support groups and clinical trials.
Pathology Awareness Australia (PAA) recently teamed up with RCA to provide subject matter experts to contribute to RCA’s KnowledgeBase.
Dr David Clift, a leading Melbourne-based anatomical pathologist and PAA ambassador, explains why he is contributing to RCA’s KnowledgeBase project.
‘Early detection of cancers is key to achieving improved health outcomes. Pathology is where 100% of cancers are diagnosed but also where treatment is monitored.
‘What RCA’s KnowledgeBase provides is an opportunity for a person or carer of someone with a rare cancer to inform themselves about their condition. I’m thrilled to be able to provide that knowledge and support.’
PAA will also be working alongside RCA on their pathology lab tours with federal politicians in the future, inviting educators along to explain to MPs and Senators the important work to be done in this medical space.
‘The work of Rare Cancers Australia and Pathology Awareness Australia is in close alignment in regard to early diagnosis,’ says Kate Vines.
‘So to be able to raise awareness around the importance of testing and monitoring of rare cancers through both these organisations is fantastic and we are excited about working with PAA into the future.’