The cost of living with cancer

Our 2025 Federal Election priorities

Female doctor talking with female patient

The upcoming federal election is a chance for Australia to end the ‘cancer lottery’, so that every person diagnosed has the best chance of surviving and living well.

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.

Rare and less common cancers account for one in four cancer diagnoses, but a disproportionate one in three cancer deaths. More than 16,000 lives are lost every year. Five-year survival rates are also lower, at 77% for common cancers compared to 62% for rare and 45% for less common cancers. 

People with rare and less common cancers face a deeply unequal system. Access to specialised expertise and treatment is limited, especially for people in rural and remote areas. Essential treatments and revolutionary genomic medicine often come with a heavy price tag – one that many families simply can’t afford.

This ‘cancer lottery’ isn’t just unfair, it’s devastating. People are facing impossible choices: depleting their life savings, turning to crowdfunding, or going without the treatment they desperately need.

That’s why ahead of the federal election, we’re calling on all sides of politics to commit to ending the ‘cancer lottery’.

“If my cancer was in the breast or lung, I would have been able to access it on the PBS. But because it’s rare, it’s not covered, and I’ve had to pay out of my own pocket.” – Natalie, diagnosed with adrenocortical carcinoma

The way forward

Australia’s next government must: 

  • provide subsidised comprehensive genomic testing at diagnosis and throughout the care pathway for everyone with a rare, less common or advanced cancer 
  • fast-track subsidised access to medicines targeting the same biomarker, regardless of where the cancer started, giving people a better chance at survival 
  • establish ‘bridging funding’ to ensure people with high unmet clinical needs, like those with rare cancers, can access registered life-saving medicines much faster 
  • give every person with a rare cancer diagnosis access to the highest specialist knowledge and advice, regardless of where they live, through the Australian Rare Cancer Portal 
  • increase financial support for people accessing treatment away from home, including for clinical trials, by expanding patient travel and accommodation schemes across every State and Territory.

Download our election priorities outline

“Because my cancer was so aggressive, every moment and every decision counted. In a week it would have spread throughout my body even more and could have meant the difference between me being dead or alive.” – Amanda, diagnosed with small cell carcinoma of the ovary hypercalcemic type

Tell your local MP

You can help us raise the voices of our community where it counts. Politicians are more likely to advocate for issues when they know they’re impacting people in their electorate, and your personal story can be incredibly powerful. 

One way you can have an impact is through reaching out to your local MP. If you or someone you love has been affected by a rare, less common or complex cancer, share your story and let your MP know about the inequities you’ve experienced. You can also let them know you support the priorities Rare Cancers Australia has highlighted to change the story for rare. 

Find your MP’s details

Share your experience with us

You can also share your experiences with our Policy and Public Affairs team. Your experiences can help shape our policy work, or provide the patient perspective to have a greater impact with decision-makers. Some people find sharing their story can also help process emotions or have something positive come from their cancer. If you’d like to talk to us about your cancer, please complete the contact form below.

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