Rare Cancers Australia (RCA) has today released a landmark report, Now it’s personal: Access and equity for all, exposing the deep inequities of experience and outcomes for people with rare and less common cancers – inequities that begin even before a diagnosisthe process of identifying a disease based on signs and symptoms, patient history and medical test results is made.
The report draws on early findings from RCA’s nationwide Cancera disease where abnormal cells split without control and spread to other nearby body tissue and/or organs Lived Experience Survey, the first of its kind in Australia with a specific focus on experience of people living with rare and less common cancers.
Nearly 2,500 adults diagnosed with cancer and carers responded to the survey. Notably, three-quarters of respondents were affected by a rare or less common cancer.
Early findings from the survey revealed that for those with a rare or less common cancer:
- Almost half felt their symptoms were overlooked or dismissed.
- 1 in 4 were diagnosed with a different condition before they got their cancer diagnosis
- 1 in 3 had to attend four or more appointments about their symptoms before receiving a diagnosis.
- 1 in 5 waited more than six months from their first medical appointment to cancer testing; for 1 in 14, that wait stretched to over three years.
- By contrast, 88% of people with common cancers were tested within three months.
- Young people (25 to 34) were more likely to delay testing, believing their symptoms weren’t serious.
- 49% said their mental health could have been supported.
- 60% wanted access to a supportive care navigator – but only one quarter were referred and connected with one.
“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 journeywhat a person experiences/lives from the time they think they have cancer and impact survival outcomes,” she states.
Survival rates remain alarmingly low for many rare and less common cancers. Five-year survival varies widely, from just 8% for people with mesothelioma to over 92% for common cancers like prostatea walnut-shaped gland in the male reproductive system that is responsible for producing semen - a bodily fluid that acts as a vessel for sperm transport during ejaculation, breast, and melanomaa type of cancer that develops from melanocytes, which are the cells that produce pigment generally in the skin (but can develop in other areas of the body).
“What makes this even more devastating is that we know that there are more young people being diagnosed with cancer. And while we don’t yet fully understand why, we do know they
need our support now,” Ms Cockburn continues. “The survey showed that younger patients have very different experiences and support needs than older people.”
Voices from the Report:
- “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.” – Kat, diagnosed at 31 with a rare cancer.
- “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. – Noel, diagnosed at 35 with a rare cancer.
The Report also highlighted the high emotional and financial toll on patients:
- Out-of-pocket costs for diagnostic tests and treatment are high, with many turning to fundraising, draining savings and superannuation to cover costs of treatments not subsidised for their rare cancer type.
- Patients in rural and regional areas face extra barriers to access specialist care and were three times more likely to decline a recommended treatment due to distance than those living in metropolitan areas.
- Many feel isolated, confused, and unsupported following their diagnosis, and are more likely to rely on internet searches for information.
“One in two rare cancer patients said they needed better mental health support. Six in ten said a supportive care navigator would help – but over one third were not referred to one even though they wanted it. These numbers are too high to ignore,” Ms Cockburn added.
The report features the story of Celestino Carosella, diagnosed with adrenocortical carcinomacancer arising from tissues that line organs (ACC) – a cancer so rare it affects fewer than one person per million in Australia. His daughter Jasmine passed away from another rare cancer, rhabdomyosarcoma, at just 22.
“Finding information was incredibly hard. My oncologista doctor who specialises in the study, diagnosis and treatment of cancer 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 for Celestino, the financial burden remains heavy:
“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,” Celestino continues.
“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,” he says.
RCA’s report outlines six policy recommendations to improve equity, speed up diagnosis, and ensure comprehensive support for all cancer patients. RCA, patients and carers from the rare community will gather at Australian Parliament House to share these with key decision-makers at the official report launch at 5:30pm on Monday 1 September, with the Assistant Minister for Health and Aged Care, Rebecca White, planning to welcome the report.
“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,” Ms Cockburn says.
“Because when we know better, we must do better. For all of us, now it’s personal.”
Access the full Report here.
RCA Media Contact: Alicia Ballesty, Head of Strategic Communications, 0499 880 742, [email protected]