Financial Toxicity in Australia's Cancer Care: Patients Turn to Crowdfunding Amid Growing Out-of-Pocket Costs

A first-person investigation by researchers who are also cancer patients has laid bare the growing crisis of "financial toxicity" in Australia's oncology care, documenting how patients are forced to crowdfund life-extending treatments, deplete savings, and forgo care entirely due to costs that fall outside the country's celebrated universal healthcare framework.

The study, conducted by Na'ama Carlin of UNSW Sydney alongside Louise Chappell and Siobhan O'Sullivan — all researchers who themselves faced cancer diagnoses — draws on interviews with 25 patients, carers, and healthcare workers to map the financial and geographic barriers that undermine equitable cancer outcomes.

Carlin was diagnosed with an aggressive breast cancer that had metastasised to her lymph nodes in 2021, when she was 29 weeks pregnant. Chappell was first diagnosed with breast cancer in 2009, with recurrences in 2016 and 2020, and currently lives with metastatic breast cancer (搜索)搜索该疾病. O'Sullivan was diagnosed with ovarian cancer (搜索)搜索该疾病 in 2020 and died in June 2023.

The Price of Immunotherapy: A $62,000 Decision

The most striking account centers on Carlin's need for pembrolizumab查看药品详情 (Keytruda查看药品详情), an immunotherapy agent originally developed for melanoma. While the drug was available to melanoma patients under Australia's Pharmaceutical Benefits Scheme (PBS) for just $42 per treatment — now capped at $25 per script — it remained in trial stages for breast cancer when Carlin required it, leaving her without PBS coverage.

Under the manufacturer's compassionate access program, the drug would cost $62,000. Carlin's oncologist delivered the news, and a triple-negative breast cancer (搜索)搜索该疾病 expert confirmed she would take the drug herself in Carlin's situation. "So, it was agreed that the drug could extend or even save my life, but the cost was prohibitive," Carlin writes.

Facing an impossible choice, Carlin and her partner launched a crowdfunding campaign. Initially suggesting a modest $10,000 target, she was persuaded to seek the full amount. "Within 24 hours, we had the money," she recounts. "The day we secured the funds was the day we brought our baby home. It was unforgettable for both reasons."

Despite her gratitude, Carlin describes feeling "betrayed and abandoned by the prevailing powers, including the government and the pharmaceutical industry," noting she had paid taxes and the Medicare levy for years. "I am ideologically committed to a public health system."

In September 2023, PBS coverage expanded to include some breast cancer indications, with further expansion announced months ago. However, Carlin emphasizes that triple-negative breast cancer (搜索)搜索该疾病 disproportionately impacts women under 40, who tend to be concentrated in casual and part-time jobs with lower disposable incomes and fewer assets. "The cost of Pembrolizumab查看药品详情/Keytruda查看药品详情 exacerbates a deep inequity in Australian society: women's precarious financial security."

Chappell faced a similar ordeal when her most recent treatment was not yet PBS-listed. Patients were expected to pay $10,000 for each of five cycles before the pharmaceutical company would provide compassionate use. She funded the first round with savings and intended to use her superannuation for the remainder. "How could most people afford even one round of this life-extending treatment?" she asked. "What is a single mum, a pensioner, or anyone without savings or resources to do?" The drug later became available on the PBS at $35 per infusion.

Radiotherapy: Upfront Costs and Coverage Gaps

Financial toxicity extended well beyond pharmaceuticals. Carlin, treated as a public patient, faced a $20,000 radiotherapy bill — much of which was rebated, but only after she paid upfront. "No one warned me of the expense or discussed payment options with me," she notes. "The receptionist who scheduled my first radiotherapy sessions told me the cost over the phone."

Chappell accessed radiotherapy through the private health system in 2020 and again the following year, with each course costing nearly $17,000 paid in advance and out-of-pocket expenses totalling $5,000. When payment issues arose, she was directed to administrative staff rather than clinical personnel. "Being told to speak to a financial administrator was such an awkward and individualistic response to essential treatment," Chappell said. "Why is chemo covered by Medicare but radiotherapy not?"

Lymphoedema (搜索)搜索该疾病: The Chronic Cost of Survival

Carlin also details the ongoing burden of secondary lymphoedema (搜索)搜索该疾病, a treatment side effect affecting an estimated 20% of patients with gynaecological, breast, and head and neck cancers, as well as melanoma. The condition, caused by damage to the lymphatic system during cancer treatment, requires management with compression garments, lymphatic drainage massage, and sometimes surgery.

Medicare offers modest subsidies for physiotherapy limited to five visits annually, but Carlin reports spending "thousands of dollars on lymphoedema (搜索)搜索该疾病 treatment" in her first two years post-treatment "with no end in sight." She describes the psychological toll: "My affected arm is swollen to double — depending on the weather — the size of my other arm. I cannot wear jewellery or a standard shirt sleeve."

"Our medical system must respond to the chronic side effects of cancer treatment, which can themselves become medical conditions," Carlin argues.

Geographic Financial Toxicity and Cultural Barriers

The research also documents what Carlin terms "geographic financial toxicity." According to the Cancer Council NSW (搜索)搜索该词条, patients living outside metropolitan areas experience poorer outcomes than those in cities, with one in five skipping appointments because of travel costs.

Wayne, an Indigenous man interviewed for the study, described navigating cancer treatment across multiple locations: locally for chemotherapy, 100 kilometres for MRI scans and radiation, 300 kilometres for PET scans, and up to 600 kilometres for surgery. When his sister required treatment away from home, the entire family stayed with her — culturally appropriate but financially punishing.

Wayne recounted a cousin who refused cancer treatment entirely when told he would need to travel to a major city. "No. That's off Country. I don't want to do that," the cousin said. "If I can't have it here, I'm not gonna bother with it." Wayne confirmed his cousin has remained true to his word, adding, "It's not uncommon."

Systemic Failures and Calls for Action

The Australian Cancer Council has stated: "Living in a country with universal health care and a publicly funded social security system, Australians affected by cancer should not be financially ruined, receive suboptimal care, or be unable to obtain health care, due to cost."

Carlin endorses this position while adding that patients should not be disadvantaged "because of where they live." She calls for participation from all stakeholders: "from the specialists who set their own fees to the health services that provide care — and the government entities that fund treatments."

The research also highlights the recent announcement by AstraZeneca查看公司主页 that it intends to withdraw Zoladex查看药品详情, a breast cancer and endometriosis medication, from the PBS later this year — a decision the company acknowledges is commercial. The drug will remain available at the dose used for prostate cancer, a move Carlin describes as "illustrative of medical misogyny and financial toxicity in cancer care."

Chappell offers a tempered note on the PBS: "The scheme does so much for securing equity for Australian cancer patients across the health-care system, but it can never be taken for granted. We need to fight for its protection, and for its improvement and extension."