At 24 weeks pregnant, Jessie Oldfield was budgeting for prams and diapers. The last thing she was expecting was a cervical cancer diagnosis that would leave her $25,000 out of pocket.
For Oldfield, from Tumbarumba, on the periphery of the Riverina, the cost of her radiation treatment at Wagga Wagga in January was not only the heavy emotional toll of being separated from her newborn for the first five weeks of his life but also the hefty price of $1,300 a week.
As well as the direct medical costs associated with her treatment, Oldfield and her fiancé were also left struggling financially with travel, accommodation, tolls, hospital parking and being forced to take leave without pay from work.
Even with subsidies from the isolated patients travel and accommodation scheme and Oldfield’s friend raising $15,000 by setting up a GoFundMe page, she said the young family was left broke and needing to rely on family for financial support.
Oldfield’s treatment finished in May but it won’t be until September that she finds out whether or not she gets the all-clear. And she is conscious she may be forced to make a difficult decision.
“I said to my partner, if I get it back, if something happens, that I don’t want treatment because I can’t afford it. I just – I won’t do treatment, because it’s too expensive.”
New research from the University of New South Wales, published in the Asia Pacific Journal of Clinical Oncology and Supportive Care in Cancer, found “financial distress has been reported by patients as more severe than the physical, social, or emotional distress” associated with the disease.
The qualitative research show that 88% of healthcare professionals believe managing the negative patient impact of the cost of cancer (known as “financial toxicity”) is fundamental to cancer care.
But Dr Jordana McLoone, the lead author of the study, says the research shows it remains a “blind spot” within a medical model of healthcare, with a lack of services, resources and training.
Financial distress can lead directly to poorer cancer treatment outcomes and early mortality when it results in treatment abandonment, delayed care seeking, missed appointments and failure to buy prescribed medicines, the research found.
Dr Elizabeth Deveny, the chief executive of the Consumers Health Forum of Australia, said: “We hear every day from people who are making decisions to delay or not have important medical care because they simply cannot afford it.”
Cancer can be one of the most costly diseases, Deveny said, with her organisation’s research finding most patients with cancer were paying over $10,000 in out-of-pocket expenses. The Breast Cancer Network in Australia found that one in four people with a breast cancer diagnosis spend more than $17,000.
Deveny said out-of-pocket costs could range from medications which are usually not fully covered by Medicare, pharmaceutical co-payments and the gap in the fees for the surgeon and the anaesthetist if they are above the Medicare rate.
While diagnostic imaging in hospital is covered by Medicare, often the scans needed outside the hospital before or after treatment are not covered, and neither is support such as seeing a psychologist, physio, speech pathologist, or dietitian accessed outside hospital, according to Deveny.
Kim Hobbs, a clinical specialist social worker at the NSW Department of Health, said when people are diagnosed with cancer, it comes as a surprise to them that there are costs at all.
Hobbs said the direct costs of treatment are often greater for Australians living outside metropolitan capital cities, like Oldfield, who can’t always access treatment in public hospitals.
But she said for all cancer patients, even the small cumulative costs can be “really tricky” when it comes at the same time as many cancer patients experience reduced income with their diagnosis.
“For some patients, even a relatively small cost like parking or the prescription costs for medications can be the difference between them getting treatment and not getting treatment or completing treatment.”
With the increasing cost of living, Hobbs said she was seeing more families who were struggling financially before the cancer diagnosis having to deal with the added burden of cancer.
Deveny said it was vital health professionals create a safe and welcoming space where health consumers could express their financial concerns and ask about whether medical costs can be reduced.
She said the CHF was calling for all state governments and the federal government to provide greater relief for the indirect costs in the public health system such as hospital parking, meals, accommodation and childcare.
