After diagnosis: Australian cancer patients pay tens of thousands of dollars out-of-pocket as the public system shifts costs onto families and unpaid carers

A new report commissioned by Cancer Council Victoria and released in the state describes the legal and financial pressures borne by cancer patients and their care networks as 'widespread', and trains its sights on a public system that is 'complex, fragmented and out of touch with reality'. According to the Australian Broadcasting Corporation, the McCabe Centre for Law and Cancer spoke with more than 200 Victorian cancer patients, carers and professional support workers; the survey found that some respondents accumulated up to A$10,000 in out-of-pocket costs over roughly two years, covering specialist fees, medications, treatment, reconstructive surgery, and transport and accommodation to and from hospital. The researchers themselves acknowledged that the survey sample was 'small', and that extrapolating to other states or larger populations remains a matter of inference.

Even having private health insurance offers little protection. Neroli Padfield, diagnosed with breast cancer in 2024, was shocked herself when she tallied her various expenses into a spreadsheet after undergoing surgery, chemotherapy and radiotherapy. She told the ABC: 'The costs start before diagnosis and they don't stop once treatment ends. I'm still paying for having had cancer, and I think that will continue for years to come.' She paid nearly A$10,400 out-of-pocket on specialist visits, tests and medications, and considers herself 'lucky' — she and her husband both work and are able to afford these costs.

'A cancer diagnosis changes your life, but unfortunately it comes with unnecessary legal and financial burdens as well,' said Hayley Jones, director of the McCabe Centre for Law and Cancer. She noted that many respondents felt 'completely caught off guard' by high out-of-pocket costs after leaving the specialist's rooms, with some forced to skip medications because they could not afford them. Parking fees, diagnostic tests and medications likewise generated unexpected expenses.

On the carer side, costs are more hidden and more long-term. The report notes that nine in ten surveyed cancer patients rely on unpaid carers, and that unpaid carers are most likely to be women. Tracey Bilson, whose husband Jeff Smith battled neuroendocrine cancer for 16 years, travelled between rural Victoria and Melbourne, with transport, accommodation and childcare costs alone exceeding A$100,000. After her husband died in 2021, her retirement savings shrank as her income fell, and she is still unable to retire as planned. 'At the time you don't think about it, it's the last thing on your mind. But it's affecting me now,' she said.

At the macro level, the ABC cited recent Monash University research noting that breast cancer will cause approximately A$1.4 billion in lost wages over the next decade — an estimate that depends on the study's model assumptions and represents a future projection rather than a realised loss. Vicki Durston, director of policy and advocacy at Breast Cancer Network Australia, was not involved in the report, but echoed its concerns: 'Cancer doesn't follow a tidy timetable, and recovery isn't always linear. We need better workplace policies that recognise ongoing treatment side effects and fluctuating capacity to work.' She stressed that cancer should not be allowed to take both a person's career and their health.

The report recommends strengthening enforceable workplace rights protections, providing managers with cancer-specific training, and reforming the superannuation system to give patients actionable advice. However, a spokesperson for the federal Department of Health, Disability and Ageing, in responding to the ABC, merely listed existing programmes such as patient travel schemes, the Australian Cancer Nursing and Navigation Programme, and Services Australia payment schemes, and made no commitments on structural reform or new financial support. The actual extent to which these existing programmes cover patients' out-of-pocket costs was not quantified in the original reporting.

Padfield said: 'You plan for a holiday, but you don't plan for cancer.' Jones, for her part, directed the conclusion at the system itself: 'If we can improve our system, people can live happier, more meaningful lives without having to face financial and legal pressures at the same time as dealing with health problems.'