More than 19,000 Australians were diagnosed with a rare cancer in 2024. Almost half of them died.

Now, there’s a push for more treatment options to be subsidised under the Pharmaceutical Benefits Scheme.

Tasmanian mother-of-three Lauren Rayner was given fourteen months to live when she was diagnosed with a rare and aggressive form of cancer known as neuroendocrine tumours last September.

Doctors say her cancer has shrunk after immunotherapy, but the drug costs more than $7000 per month.

It is TGA and PBS approved for some common cancers, but not for the 35-year-old’s type of rare cancer – despite a genomic test matching Lauren as suitable for the medicine.

Organisation Rare Cancers Australia wants to overhaul the funding system, so that treatment is subsidised for all rare cancer patients, instead of based on the specific form of cancer.

A review is currently underway into whether a different immunotherapy, Keytruda, should have a broader PBS listing.

Byron Bay’s Natalie Willacy has adrenocortical carcinoma and accesses the treatment, which costs her $8000 every six weeks, compared to less than $30 a dose for patients with breast cancer and other common forms.

The independent Pharmaceutical Benefits Advisory Committee will publish its recommendation on Keytruda in late August and charities hope that decision will be the catalyst for bigger changes.

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