Participants in the Kosi Challenge, which raises funds and awareness for Rare Cancers Australia. Photos: Supplied.
When Kate Vines was diagnosed with rare medullary thyroid cancer in 1991 and told she had three months to live, she quickly discovered a world of helplessness, loneliness and endless questions with no answers.
It’s a similar story for some 52,000 Australians with rare cancers each year, who face a critical lack of support and resources.
That realisation led Kate and her husband Richard to found Rare Cancers Australia in Bowral in 2012, a charity now helping more than 1000 people each year navigate the challenges of living with rare, less common and complex cancers while also raising awareness.
Rare Cancers Australia cancer navigation program lead Jaime Macedo said the organisation had grown to such an extent that about two months ago it opened an office in Wollongong.
Jaime said patients with rare cancers faced more inequities in comparison to patients with the five common cancers – breast, bowel, melanoma, prostate and lung – including limited access to specialised treatments, fewer support options, limited information and less clinical expertise.
But through the organisation’s 360-degree care model, Rare Cancers Australia is making a tangible difference in the lives of those affected.
While Kate retired from the organisation two years ago, it has continued to expand rapidly, with Jaime witnessing significant growth over four years as staff numbers increased from 16 to 35 to meet rising demand for its services.
“Hence why we created an office for Wollongong, so number one, we can cater for the growth of our team who are based at Wollongong so they’ve got an office they can go work from as well, but number two is to create more awareness in that area,” he said.
“Rare Cancers Australia supports patients of today with emotional, financial and clinical support.
“We support patients of tomorrow through our advocacy and policy work with governments to make changes.”
Jaime said with 300 subtypes of rare cancers, ranging from sarcoma to bile duct cancer, barriers were often access to medicine, not having a treatment pathway like common cancers, any treatments often being costly due to not being subsidised, minimal psychosocial support, and logistical pressures for regional and remote patients needing to travel to metro areas.
Common cancers, on the other hand, had many foundations established for people to reach out to with dedicated nurses, tailored services and supports.
Jaime said there had been many great success stories, including a young boy who was diagnosed with neuroblastoma.
He said the boy’s family needed access to a drug only available overseas at the time, so set up a crowd fundraising page for his family and helped attract media coverage.
“We helped get their little boy to America to access this drug for his neuroblastoma,” he said.
“We helped this family to link up with other families with a child living with neuroblastoma, just so they can be guided and supported.
“I’ve been supporting this family quite intensively over the last few years, and we were able to hit that half a mill, which was how much we were needing to fundraise.”
He said the family had now made their third trip to the US and the Australian Government last month announced interim funding to get the drug into Australia.
“Its impact is real and it’s tangible,” he said.
“We are very privileged to be able to make these changes and do whatever we can to ensure people get access to treatments or just improve their quality of life, get them the expertise they need, give them information, or link them up to other people, just so they don’t feel isolated, because isolation is a big one.
“They talk to us about how they feel isolated because there’s no-one else out there, and once we can link them up with someone with a similar cancer diagnosis, it changes their world.”
Among its awareness and fundraising campaigns is the Kosi Challenge, which involves people walking Mt Kosciuszko in March each year to raise funds and awareness, and CanForum at Parliament House.
Contact Rare Cancers Australia by calling 1800 257 600 or visiting the website. Its Wollongong offices are located across from The Illawarra Hotel in Keira Street.
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