Cancer patients 'completely blindsided' by high out-of-pocket expenses

Financial and legal costs of cancer in Australia outlined in new report In short: A new report into the financial and legal impact of cancer, has found both patients and carers report lost income and significant out-of-pocket costs that compound emotional distress. This comes at at time when the overall cancer incidence in Australia is rising, and more people are living longer post-diagnosis. What's next? Nine reform areas were highlighted in the report, including strengthening enforceable workplace rights and protections and superannuation reform. When Neroli Padfield sat down to add up all the out-of-pocket expenses associated with her cancer journey she knew it would be sizeable. Ms Padfield was diagnosed with breast cancer in 2024 and underwent surgery, chemotherapy and radiotherapy. Even with private health insurance she spent about $10,400 on specialist appointments, tests and medications. "As I was putting it all into a spreadsheet I thought: 'Wow, this is ridiculous,'" she said. "The costs started even before I was diagnosed. "And the costs don't stop when treatment stops. I'm still paying for having had cancer and I think I will be paying for a number of years." Ms Padfield considers herself "lucky" to have kept working during treatment, with her workplace allowing her to work flexible hours from home. "It was lucky that I was working, my husband was working, and we could afford it," she said. 'Widespread' financial pressure Both patients and carers lose income and have significant out-of-pocket costs according to a new report from the McCabe Centre for Law and Cancer commissioned by Cancer Council Victoria. Key recommendations from the report included strengthening enforceable workplace rights and protections, reforming superannuation and increasing awareness. The report described the legal and financial challenges experienced by Victorians living with cancer and their support networks as "widespread". "A cancer diagnosis is life-changing, but unfortunately it also comes with unnecessary legal and financial burdens," said Hayley Jones, the director of the McCabe Centre for Law and Cancer. "These challenges … often arise at times of crisis and are shaped by systems that are complex, fragmented and poorly aligned with the realities of cancer and caring." The researchers surveyed more than 200 Victorians affected by cancer, including those with lived experience, carers and the professionals supporting them. Ms Jones said many people reported feeling "completely blindsided" by high out-of-pocket fees as they left specialist appointments, and some said they skipped medications because they could not afford them. "Some of the people we interviewed had up to $10,000 in expenses in about two years," Ms Jones said. "That ranges from specialist fees to medications, treatment and reconstructive surgery, as well as travel to appointments and accommodation, particularly if people live regionally." Hospital parking, diagnostics and medication also came with unexpected costs. Although the survey's sample size was small, Ms Jones said researchers anticipated they would see similar results if replicated in larger groups or other states. Vicki Durston, Breast Cancer Network Australia's director of policy and advocacy who did not contribute to the report, agreed. "We certainly welcome this report. It consolidates what we've known for a long time," she said. "Not only in Victoria, where this report was commissioned, but certainly around the country." Living longer post-diagnosis In Australia the overall incidences of cancer is rising, largely due to population growth and aging. But earlier diagnosis and better treatment options mean patients live longer than ever before. Ms Jones said it was important that survivors and their families had good quality of life post-diagnosis, and part of that was making sure they had financial and legal support. "Sometimes people have ongoing impacts in terms of potential cognitive impairment, ongoing pain. They may not be able to go back to work in the same way even if their cancer is resolved," she said. "We would like to see greater workplace protections made available for people." A recent study from Monash University looked at the productivity burden of breast cancer in Australia, finding the disease could lead to about $1.4 billion in lost wages over the next decade. Ms Durston said the financial strain of moving to part-time work, or being unable to work, could impact someone's ongoing quality of life. "Cancer doesn't follow this neat timeline and recovery is not always linear, so we really need workplace policies that better recognise ongoing treatment side-effects and the fluctuating need for capacity in the workplace," she said. "We don't want to see cancer costing someone their career as well as their health." A Department of Health, Disability and Ageing spokesperson said the government was investing in initiatives such as the Australian Cancer Nursing and Navigation Program to support people to access information, nursing care, navigation assistance and specialist support services. They also said each state and territory had patient travel schemes, and there were a range of payments, programs and services available through Services Australia. Caring for carers The report recommended strengthening enforceable workplace rights and protections by providing cancer-specific training for managers. It also suggested patients should be given practical superannuation advice so they understood their rights This proposal is supported by Tracey Bilson who cared for her husband Jeff Smith through his 16-year journey with a rare neuroendocrine cancer before his death in 2021. She estimates she spent more than $100,000 on travel from regional Victoria to Melbourne for treatment, accommodation and childcare costs. She is still counting the cost. Ms Bilson will not be able to retire when she wants because her reduced income has led to reduced superannuation. Some weeks Ms Bilson was only able to work two days, and she used up all her available leave. "You don't think about that at the time, that's the last thing you think about. But it's affecting me now,"she said. Nine-in-10 people with cancer interviewed by researchers relied on an unpaid carer, who was most likely to be a woman. "If we can improve our systems, people will have happier and more meaningful lives without having the stress of dealing with the financial side and the legal challenges, as well as the health challenges of cancer," Ms Jones said. Ms Padfield, who is no longer having active treatment, agreed. She said many people with cancer and their families relied on other people with lived experience to point them in the right direction for extra support. "You plan for a holiday, you don't plan for having cancer,"she said.