Sarah McGoram's family has been left financially destitute after her rare cancer diagnosis, a situation that advocates say exposes deep systemic inequities in Australia's healthcare system. The 42-year-old mother of two from Canberra was diagnosed with a rare form of sarcoma in 2020, and despite having private health insurance, the family has spent over $100,000 on treatments not covered by Medicare or their insurer.
Financial devastation from out-of-pocket costs
According to McGoram, the family has exhausted their savings, sold their second car, and taken out loans to cover the costs of experimental therapies, travel for treatment, and lost income. "We've gone from a comfortable middle-class life to barely making ends meet," she said. "It's not just the medical bills; it's the loss of income, the travel, the accommodation. It all adds up."
McGoram's husband had to reduce his work hours to care for her and their children, further straining the family's finances. The couple's private health insurance covered only a fraction of the costs, and many of the specialist treatments she required were not listed on the Medicare Benefits Schedule.
Systemic barriers for rare cancer patients
Cancer Council Australia CEO Professor Tanya Buchanan said McGoram's story is all too common. "Patients with rare cancers face a double burden: the disease itself and the financial toxicity that comes with navigating a system not designed for them," she said. "We need urgent reform to ensure that all cancer patients, regardless of the rarity of their diagnosis, have equitable access to affordable treatment."
Rare cancers account for about 20% of all cancer diagnoses in Australia, yet they receive only a fraction of research funding. The lack of clinical trials and approved treatments means patients often have to pay out-of-pocket for unproven therapies or travel overseas.
Call for policy change
Advocacy groups are calling for a national rare cancer strategy to address the inequities. Key demands include expanded Medicare coverage for rare cancer treatments, increased funding for research, and better support for patients facing financial hardship.
"No one should have to choose between bankruptcy and treatment," said McGoram. "We need a system that supports all patients, not just those with common cancers."
The federal government has announced a review of the Medicare Benefits Schedule, but advocates say more immediate action is needed. In the meantime, families like the McGorams continue to struggle under the weight of a system that, as Sarah puts it, "is failing the very people it's supposed to help."
