‘We’ve heard the recommendations. Now is the time for decisive action,’ declares RCA CEO

Rare Cancers Australia (RCA) will launch the Rare Cancer Moonshot in Parliament House today, framing it as a “final pitch for action from a community feeling left behind. A community which includes the co-founder of RCA, a mother whose daughter is battling rare brain cancer, and countless others living with rare anal and ovarian cancers.”

Every day Rare Cancers Australia hears from patients navigating a healthcare system that can seem as uncompassionate as it is complex. There is an immense financial burden of services and treatments, the frustration of not being able to access vital information, and the heartache of feeling powerless to make informed decisions about their care.

“The cost of rare and less common cancers extends far beyond the physical toll – it profoundly impacts the emotional and financial well-being of patients, their loved ones, the community and our economy,” stated Christine Cockburn, CEO of Rare Cancers Australia.

These challenges resonate with clinicians, supporters, and advocates across the political spectrum. Rare cancers do not discriminate. The issues have been acknowledged in Senate and House of Representatives inquiries and through the ongoing review of Health Technology Assessment (HTA) processes. There is a wide variety work from many NGOs and think tanks, and we have broad recognition that change is needed, yet progress remains frustratingly slow.

“Time is of the essence. Patients have waited long enough,” Cockburn emphasised.

“We’ve had the conversations. We’ve heard the recommendations. Now is the time for decisive action.

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