Most Australian’s aren’t aware of the cancerA disease where abnormal cells split without control and spread to other nearby body tissue and/or organs. Cancer cells can also spread to other parts of the body through the bloodstream and lymph systems. lottery that exists for people diagnosed with the life limiting disease. That if you’re unlucky enough to be diagnosed with a rare or less common type of cancer, you face a battle not only for your life but also against a deeply unequal system.
In the lead up to the federal election, Rare Cancers Australia (RCA) has released its 2025 Election Priorities manifesto, outlining the need for access specialised expertise, treatments and revolutionary genomic medicines for those with rare cancers facing impossible choices.
One year ago, Natalie Willacy was told she had an extremely rare form of cancer and that she may not make it through the night.
Today, the 35-year-old Byron Bay local, has taken her incredible story of survival to policy makers in Canberra, highlighting the disparities and inequities people with a rare cancer diagnosisUsing medical test results, identify and name a disease and/or condition. face in our current health system.
“I was at the hospital when I got the news that I had a rare form of cancer called Adrenocortical CarcinomaA cancer that begins in the skin or in tissue that covers our inside body organs.; even my own oncologistA doctor who is a specialist in cancer treatment. had never even heard of it,” Natalie recalls.
“I also had a 17-centimetre tumour in my chest just millimeters away from my heart, which made surgery too dangerous. That’s when they told me that if I made it through the night, I would start chemotherapy
• a chemical drug treatment to kill or slow-growing cancer Cells
• these drugs are called cytotoxic drugs
the next day.”
Natalie made it through the night and started her chemo the next day and didn’t leave the hospital for the month to follow. The chemotherapy took its toll on her with awful side effects. Her treating team started looking into alternative treatment options through genomic testing and struck gold when she matched for a form of immunotherapy called Pembrolizumab, also known as Keytruda.
Keytruda, whilst listed for 13 other types of cancer on the Pharmaceutical Benefits Scheme (PBS), is not publicly available for Natalie’s rare type of cancer and came with a hefty price tag of $8,000 per treatment.
“I need one round of the immunotherapy every six weeks, each costing $8,000 and requiring me to commute between Byron and Brisbane,” says Natalie.
“I couldn’t continue the chemo with the horrendous side effects I was experiencing, and I feel hopeful about the immunotherapy option, which has reduced my tumour size and enabled me to have the surgery I need. The financial impact has been hard though as I’ve had to access my superannuation to be able to pay for the treatment.”
Rare Cancers Australia CEO, Christine Cockburn, says that Natalie’s story exemplifies the inequities rare cancer patients face every day, even more so for those living in regional parts of Australia. She wants the costs of living with cancer to be prioritised by policy makers as we head towards a federal election.
“This federal election is a defining moment for cancer care in Australia. It’s a chance to save thousands of lives and build a future where survival isn’t dictated by cancer type, postcode, or financial means,” Ms Cockburn stated.
“In the land of the fair go, this ‘cancer lottery’ is unacceptable. Every person diagnosed with cancer in Australia should have the best chance to survive and live well, no matter their cancer type, income, or where they live,” she said.
RCA’s 2025 Election Priorities manifesto, sets out tangible solutions that must be top of the action list for Australia’s next Government, including subsidised genomic testing, faster, fairer and affordable access to treatments and access to highly specialised expertise, regardless of where you live.
ENDS
Media Contact: Alicia Ballesty, Head of Strategic Communications | 0499 880 742 [email protected]