New research has found that Australians living with blood cancer spend an average of $3,910 (US$2,800) a year on out-of-pocket expenses, with some paying more than $20,000.
One in 12 Australians will be diagnosed with blood cancer in their lifetime, meaning the disease will affect more than 8 percent of the population.
The Leukaemia Foundation surveyed 655 people living with leukaemia, lymphoma, myeloma and related blood cancers and found that costs extend well beyond medical bills.
Medications were the most common expense, reported by 81 percent of respondents, followed by travel to treatment (71 percent), parking (51 percent) and lost income (46 percent).
Those in rural areas reported annual travel and accommodation costs of $2,582, nearly 50 percent more than the $1,730 reported by their metropolitan counterparts, highlighting the additional burden of long-distance travel for specialist care.
Almost two-thirds of respondents said managing these costs was difficult, and 44 percent reported that money worries had harmed their health or recovery.
About one in eight said financial pressure had led them to delay, miss or cancel healthcare altogether.
The disruption to working life was stark: 40 percent left employment permanently because of their diagnosis, and a quarter took more than six months off work.
Nearly half reported household income losses of $20,000 or more, with 13 percent losing $100,000 or more.
Most people met the costs by drawing on personal savings (78 percent) rather than seeking financial assistance, though almost one in five received support from the Leukaemia Foundation.
And the financial strain often outlasts treatment, with 47 percent saying they were still experiencing financial stress related to their diagnosis, while more than half said the overall cost had been greater than they had expected.
The Leukaemia Foundation said the findings pointed to an urgent need for greater financial support for people navigating a blood cancer diagnosis, particularly those in regional and rural communities.
Bill Stavreski, the foundation’s head of research, told The Epoch Times that, while it had anecdotal evidence in the past, the results of the survey were “startling.”
“While hospital admission costs are covered, patients still face health and non-health costs, particularly travel and accommodation. Some people travel hundreds or even thousands of kilometres for treatment, and some can be in hospital for months,” he said.
“That means their families need to find accommodation nearby so they can be there to support the patient. Currently, for instance, Victoria pays $50 a night and Queensland $70, so it goes nowhere near covering the actual cost.”
The foundation also collected many individual stories while doing the survey, which gives insight into the personal toll.
“They’ve told us of tapping savings, going into debt, and selling assets—cars, jewellery, even homes,” Stavreski said. “And even after beating the cancer, and going into remission, they’re left still battling to recover financially.”
The foundation is running a petition calling for greater support for people living with the disease.
