On top of worrying about treatments and side effects, many people with cancer also worry about the cost of their care.

In a new study, Australian researchers found more than 20% of people with cancer reported financial difficulties as a result of their cancer care and if they are unemployed this goes up to over 25%.

The paper, published in the Journal of Cancer Survivorship, used research from a national  database in The Netherlands to assess the impacts of maintaining a job and financial problems that arise during cancer treatment.

Senior author Flinders University Professor Bogda Koczwara, director of the Flinders Centre for Innovation in Cancer, says: “Being unable to work during cancer can make it difficult for the patient to meet the costs of treatment.

“The so called ‘financial toxicity’, or difficulty paying for cancer treatment, has been associated with distress, bankruptcy and in some cases, earlier death,” she says.

“More cancer treatments in Australia require some form of user-pay arrangements; from self-funded chemotherapy and higher co-payments, to escalating parking and travel costs.

“There have been calls in Australia for doctors to openly disclose the extent of out-of-pocket expenses associated with the patient’s treatment, as part of the informed consent process.”

Patients, health professionals and employers, need support to help people return to work after cancer and to manage work dhanges after a cancer diagnosis.

Experts at the Flinders Centre for Innovation in Cancer have developed a web resource to help with various needs in this area.

The website includes links to informative Australian and international resources. It also has a list of questions patients should ask their doctors and employers, assessments on their ability to work, resources on legal rights and obligations, and personal perspectives of cancer survivors.

It aims to provide information on not just what to expect but what could be done and by whom. For instance, it provides a template for a return-to-work plan and a checklist – developed by an occupational physician – for doctors of items to examine to assess a patient’s ability to work.

Researchers need to start measuring the impact of cancer on employment at both the individual and social level and develop strategies to manage it. We shouldn’t forget there are more than a million cancer survivors in Australia, many of whom are young enough to continue working after cancer.

“Financial difficulties were also more common for men, young people, people who weren’t married, and people who had lower education or socioeconomic status,” says University of Technology Sydney lead author Dr Alison Pearce.

“For many people in these groups, financial reserves and flexibility might be limited. For example, young people may not have had time to save money for situations like this, or people working casual jobs might have lower income as well as less access to sick leave.”

Introducing return to work programs for cancer survivors might be one way to prevent or reduce financial difficulties among cancer survivors. This can be assisted by multidisciplinary treatments involving physical therapy, psychological support and workplace specific training to help people return to work.

Out-of-pocket costs are rising rapidly and can influence treatment decisions and health outcomes, 2016 research found.

Australia delivers health outcomes that rank well internationally, with per capita spending demonstrably less than that of the United States.

“Of concern, Australia’s out-of-pocket costs for health care are sixth highest among Organisation for Economic Co-operation and Development countries, despite universal health insurance,” the research from Flinders University Professor David Currow found.

“These out-of-pocket expenses accounted for 57% of non-government health expenditure in 2011–12, or over 17% of all health care expenditure.

“Health care costs in Australia continue to rise well above the consumer price index. The net burden of costs are reported by clinicians to influence some decisions that patients make, with the potential for detrimental health outcomes for individuals and for Australia’s health as a whole.

The impact of cancer treatment costs on patients and their families is increasingly recognised in Australia and the world. But the indirect effect of a patient being unable to work as a contributor to financial toxicity, has attracted much less attention.

According to a previous study in BMC Public Health Australia loses almost $2 billion of GDP every year due to people with cancer leaving the workforce.

Up to 67% of Australians of working age (25-64) diagnosed with cancer reported changes to their employment in 2015, such as reduced hours and stopping work and up to 50,000 people with cancer weren’t working at all.

“Although in the Netherlands, like Australia, we have a good social security system to pay for cancer treatment and disability, people still experience financial difficulties,” points out Professor Dr Lonneke van de Poll-Franse from the PROFILES (Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship) registry that provided the data.

“More attention should be paid to the potential origins of this problem, for example maintaining employment, getting a mortgage or insurance or missing out on work-related financial bonuses.”

Some types of cancer were more likely to result in financial difficulties. In the study, people who had blood cancer or colorectal cancer were more likely to feel stress due to the costs of cancer, while people with a type of skin cancer called Basal Cell Carcinoma were less likely to experience financial stress.  This may reflect the duration and complexity of treatment for different cancers.

‘Financial toxicity is more than costs of care: The relationship between employment and financial toxicity in long-term cancer survivors (2018)’ by A Pearce, B Tomalin, B Kaambwa, N Horevoorts, S Duijts, F Mols, L van de Poll-Franse and B Koczwara was published online in the Journal of Cancer Survivorship. 24 October 2018.

The cost of cancer, at an individual and societal level, is one of the topics for discussion at the 2019 Cancer Survivorship Conference in Sydney next year (March 28 and 29, 2019). Cardiovascular disease after cancer treatment, and support for the mental health of patients and their carers are among other topics.

A public lecture on mental health and cancer will be held on Tuesday 6 November (6-7.30pm) at the Flinders Centre for Innovation in Cancer, next to the Flinders Medical Centre at Bedford Park.