Rare cancer patients pay the price of policy paralysis: New report

Rare Cancers Australia (RCA) is set to release a new report exposing the staggering disparities faced by Australians with rare and less common cancers, inequities that begin even before a diagnosis is made. Dedicated to RCA Co-Founders Kate and Richard Vines, who founded the advocacy group from their own lived experiences, the report will be officially launched today by Assistant Minister for Health and Aged Care, Rebecca White.

At its core, the Now it’s personal: Access and equity for all report draws on early findings from RCA’s nationwide Cancer Lived Experience Survey, the first of its kind to specifically examine the journey of nearly 2,500 people living with rare and less common cancers and their carers.

The findings paint a stark picture. One in four patients were initially misdiagnosed, while one in three had to attend four or more appointments before receiving a cancer diagnosis. One in five waited more than six months from their first medical appointment to cancer testing, and for one in fourteen, that delay stretched beyond three years. By contrast, 88% of people with common cancers were tested within three months.

“These findings are shocking, but not surprising,” said RCA CEO, Christine Cockburn. “They confirm what we’ve long known – that people with rare and less common cancers face unacceptable delays, a lack information and support, and struggle to access treatment. But what this Report also makes clear is that the inequity starts early – when people are fighting to be heard, to have symptoms taken seriously, and to be referred for testing. These barriers persist throughout the cancer journey and impact survival outcomes.”

Survival rates remain devastatingly low for many rare and less common cancers. While five-year survival for prostate, breast, and melanoma exceeds 92%, it drops to just 8% for mesothelioma.

For younger patients, the challenges extend beyond survival into stigma and isolation. “Being a young person with cancer is very hard. There’s a belief that if you’re young, you can’t be seriously ill. And it’s so incredibly lonely when you’re the only young person in the chemo ward,” said Kat, diagnosed at 31 with a rare cancer.

Noel, diagnosed at 35, shared a similar experience. “I was otherwise young, fit and healthy, working as an operator. I was planning my wedding to my fiancée and raising my son to be the best version of himself that he could be. When I heard those three words, ‘you have cancer’, I felt like I’d been hit by a freight train with no signs of it slowing down. My future hopes and dreams were shattered within seconds.”

Cockburn noted the disturbing trend of rising diagnoses among younger people, saying “While we don’t yet fully understand why, we do know they need our support now. The survey showed that younger patients have very different experiences and support needs than older people.”

The emotional strain is compounded by a punishing financial burden. Patients with rare cancers face steep out-of-pocket costs for tests and treatments, often resorting to fundraising, draining savings, or cashing out superannuation to cover innovative treatments that are not PBS-listed for their cancer type.

Among the stories featured in the report is that of Celestino Carosella, who was diagnosed with the ultra-rare adrenocortical carcinoma (ACC), a cancer so rare it affects fewer than one person per million in Australia. His daughter Jasmine tragically died from rhabdomyosarcoma at the age of 22.

“Finding information was incredibly hard. My oncologist had never even heard of ACC,” Celestino said. “RCA supported our family in ways I can’t fully explain – the information, advice, and connection to others who understood through a support group – it became my lifeline. It wasn’t just support. It was survival.”

But the weight of financial strain has not lifted. “My treatment costs me around $8,000 per round out-of-pocket. It’s proven to help – but it’s not approved to be listed on the Pharmaceutical Benefits Scheme (PBS) because there aren’t enough of us. The system isn’t built for people like us,” he said. “We need a better, more compassionate system – one that values lives, not numbers. We’re not statistics – we’re people, with families. It makes you feel expendable.”

While RCA saw hope in the potential of a pan-tumour (multi-cancer) approach to medicines access, the advocacy group expressed frustration and disappointment at the recent PBAC rejection, after campaigning for the reform for eight years.

“We need to fast-track the process of bench to bedside for promising new treatments. As cancer patients we just don’t have time, it is not on our side, and current healthcare models and policy must catch up with the science if we want to ensure that no patient is left behind,” said Caitlin, living with ovarian cancer.

The report sets out six key policy recommendations to tackle these inequities, calling for faster diagnosis, earlier treatment access, and comprehensive patient support. Cockburn said, “The inequities in cancer care are not new. But the failure to act now, when we have the evidence, the momentum, and the tools to do better, is not an oversight. It’s a choice. Because when we know better, we must do better. For all of us, now it’s personal.”

The recent incoming government brief (IGB) has already identified a significant backlog of review recommendations from Labor’s first term, including the HTA Review, which must be actioned under the strain of a lean health budget and resource cuts.

With RCA’s report launch coinciding with CanForum and PharmAus this week, all eyes will be on Federal Health Minister, Mark Butler, to see whether he delivers any meaningful announcements or whether patients will be forced to keep waiting.

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