In the leadup to Rare Cancers Awareness Day on 26 June, RCA is celebrating 10 years of supporting Australians living with rare, less common, and complex cancers.
“We started RCA ten years ago after Kate was diagnosed with medullary thyroid cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs in 1991. Her doctor had never heard of the condition, didn’t believe she could be cured and told her she had three months to live. Awareness of rare cancers has gradually improved since that time, but sadly the journey that many patients experience – of uncertainty, confusion, isolation, and frustration – remains all too common. That is why we started RCA, because we believe that no Australian should have to go through their cancer journeywhat a person experiences/lives from the time they think they have cancer alone,” said Mr. Vines, Chief Executive of RCA.
From the humble beginnings of working from their home in Bowral, the pair have grown RCA into a leading patient organisation within the Asia Pacific region, actively supporting over 600 Australians at any one time with access to dedicated Specialist Cancer Navigators.
“RCA has always been a little different. We specialise in providing personalised support to Australians who have no straightforward path through their cancer journey, which means we often need to go beyond traditional patient support. Our 360-degree care model is aimed at being where the patients need us, when they need us.
“That might look like working with patients and their oncologists to help them access the latest medications through clinical trialsresearch studies performed to test new treatments, tests or procedures and evaluate their effectiveness on various diseases or compassionate programs, or connecting them with specialists who have a particular interest in their type of cancer. We can also just be there for people, to listen and to understand. We recognise that every person is different, and every cancer is unique, so whatever matters to that patient is what matters to us,” said Mr. Vines.
A key achievement of the charity is the launch of a patient fundraising platform, which has helped people raise over $4 million in donations to help afford non-subsidised therapies and out of pocket costs, to help soften the financial free-fall that a rare cancer diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results can bring.
RCA has also helped to influence the listing of over 100 urgent, lifesaving or life-extending medications on the Pharmaceutical Benefits Scheme (PBS) in collaboration with patients, and initiated the National Oncologythe study, diagnosis and treatment of cancer Alliance (NOA), bringing the brightest minds and thought leaders in the cancer community together to approach government with a united voice on health system reform.
The charity hosts CanForum annually, one of the most significant cancer patient advocacy events in Australia. It also developed the Pinnacle Program, a global peer-to-peer mentoring program to help support and empower patient organisations throughout the Asia Pacific region.
“We are very proud of what we have achieved over the last 10 years with a small but highly dedicated and passionate team. But we know there is a very long way to go. Rare and less common cancers now account for more than one in three cancer diagnoses in Australia – that’s one person diagnosed every 10 minutes – and over half of all cancer deaths. We believe that every Australian living with cancer, regardless of rarity, deserves access to quality, personalised support. We will continue working with patients, clinicians, industry and government for as long as it takes to drive the change that patients need and deserve,” said Mr. Vines.
About Rare Cancers Awareness Day 2022: You Are Not Alone
Rare Cancers Awareness Day is held annually on 26 June. It’s a day to celebrate and support Australians affected by rare cancer and highlight the support patients need and deserve.
We believe that every person with cancer, regardless of rarity, deserves support to help cushion the freefall that a diagnosis can bring. Whether that’s connecting with a Specialist Cancer Navigator for personalised support and guidance or finding a community of people who get it; support and connection matter in a rare experience.
By showing your support for rare, together we can remind people with rare cancer that they are not alone.