Getting into debt, resorting to food banks and skipping treatment are some of the manifestations of financial toxicity experienced by Australian patients with haematological cancers, a study shows.

While Australia has a publicly-funded health system, patients with haematological cancer still face out of pocket costs for treatment of hundreds and sometimes thousands of dollars a month, according to a survey of patients at two Melbourne tertiary centres.

Responses from 113 patients with leukaemia (62%), multiple myeloma (27%)  and lymphoma (11%) showed that many were driven into financial hardship because of their illness leading to unemployment, early retirement combined with the burden of treatment costs and indirect expenses such as transport.

The study findings, published in Leukaemia Research, showed that 42% of patients experienced a significant degree of financial toxicity based on the Comprehensive Score for financial toxicity (COST) instrument. Patients of working age, without private health insurance and the 22% who had to give up work or retire early due to disability were particularly vulnerable to financial hardship.

Despite Medicare and PBS systems, patients with blood cancer reported average out of pocket expenses of $224 a month, with some paying up to $1,650. The most common expenses were was prescription medications, followed by travel costs and allied health expenses such as fees for tests.

While some patients were able to draw on income protection or other forms of insurance to pay bills, 71 % said they had used other means to cope financially. About half used their some or all of their savings; 16 % borrowed money from friends or family, and 12% used credit cards to cover expenses. One in five patients reported accumulating debts ranging from $350 to $40,000 (median $5000).

One in ten patients said they had trouble paying a mortgage or utility bill, while others described financial coping strategies such as eating out less, fewer purchases, staying home more and utilising charity food boxes.

Of particular concern was the finding that 5% of patients reported delaying or missing medication as a method of saving money and a further 9% had delayed or missed medical appointments.

The researchers said this was the first study to look specifically at financial toxicity in patients with haematological cancers and the results appeared to confirm an impression that expenses for blood cancers were higher than for other illnesses. This might be due to factors such as frequent need for blood and platelet transfusion support, the high prevalence of fatigue and life-threatening infectious complications limiting capacity to work and long periods of hospitalisation to recover from intensive chemotherapy, as well as stem cell transplantation, resulting in prolonged periods of absenteeism and physical incapacity.

“Clinicians can be cognisant of haematology patients potentially at higher risk of financial toxicity in Australia by reviewing the patient chart for red flags; patients of working age, those without private health insurance and patients that have been forced to retire early or have become unemployed due to their diagnosis should be of concern,” they suggested.

They advised that patients should be informed of schemes designed to provide some reimbursement of excess travel-related costs and the discounted parking available through hospitals. High-risk patients and their families should be referred to social work and organisations such as Cancer Councils to ensure they can be assisted in accessing other safety-nets, government services and philanthropic assistance,” they added

“Clinicians should also be mindful that patients who travel long distances to access care are at higher risk for financial toxicity. There are practical steps clinicians can take to help their patients. Look to reduce out of pocket expenses by scheduling diagnostic tests and appointments on the same day to reduce travel-related costs,” they wrote.