Social Responsibility

Rare Cancers Australia celebrates a decade of ‘making a difference’ while bidding farewell to co-founder

Health Industry Hub | June 22, 2022 |
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Social Responsibility: In the leadup to Rare Cancers Awareness Day on 26 June, leading charity Rare Cancers Australia (RCA) is celebrating 10 years of supporting Australians living with rare, less common, and complex cancers.

The anniversary represents a major milestone for the charity, which provides personalised support to patients and their loved ones, and works to drive change in access, affordability, and quality of care for the patients of today and tomorrow.

Richard Vines and his wife Kate gave up their $300,000 a year jobs to set up RCA.

“We started RCA ten years ago after Kate was diagnosed with medullary thyroid cancer 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 journey alone,” said Richard Vines, Chief Executive of RCA.

On the eve of this anniversary, RCA bids farewell to co-founder Kate Vines.

“Kate will always be the inspiration and the very foundation of the organisation. It is a completely unique navigation service – a 360-degree care model that is aimed at being where the patients need us, when they need us – and that is entirely from Kate. It’s patient centricity in its most genuine form. It’s fair to say there is very little that can get between Kate and what she need to help a patient. There are many Australians living today thanks, in significant part, to her fearlessness and tenacity,” commented Mr Vines.

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 trials 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 diagnosis 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 Oncology 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.

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