THAT cancer is a costly disease is well known to many. The term “financial toxicity” was coined to describe the adverse financial impact of cancer-related costs on the well-being of patients and their families. Besides direct costs stemming from treatment- and healthcare-related expenses, financial toxicity also includes the indirect costs of cancer due to the loss of wages, productivity, savings or household assets.
Our findings from the Asean Costs in Oncology (Action) study among more than 1,000 Malaysian households revealed that 50% had experienced financial catastrophe (making out-of-pocket payments for cancer-related care that exceeded 30% of annual household income) within a year after a cancer diagnosis.
Alarmingly, one in every three cancer-stricken households became medically impoverished (annual household income dipped below poverty line after subtracting out-of-pocket cancer-related expenses).
Interviews and discussions with cancer patients further revealed major unmet financial needs related to inadequate health insurance coverage and reimbursement policies, unaffordable supportive medical care, high cost of household help/childcare, expensive dietary supplements and financially burdensome transport costs to attend hospital appointments.
The financial burden of cancer was further exacerbated by employment issues experienced by cancer patients after their cancer diagnosis, where loss of household income led to hardship among the cancer-stricken households.
Given the above, we propose several recommendations:
1. Ensure affordability of supportive medical items
Besides the costs of cancer treatments, many patients also incur additional expenses for supportive items. For instance, women with breast cancer who had a mastectomy will require breast prothesis and special bras, while colorectal cancer patients may be dependent on stoma/colostomy bags. These supportive items are not cheap and not covered under health insurance plans.
In addition, some patients may require these items long term, which when added up can be financially burdensome. The relevant government ministries should ensure that these essential items remain affordable and accessible, especially for the hardcore poor and those in the B40 groups.
Meanwhile, medical insurance should also cover these items, which are often medically needed to support patient’s recovery, and to ensure their well-being.
2. Employment protection policies
Cancer treatment often takes at least a few months to complete. During this period, patients will have to take time off work to, not only undergo treatment, but also to recuperate from side effects, which can be debilitating. However, paid medical leave are often insufficient, forcing patients to take prolonged unpaid leave to complete their treatment or continue working while receiving treatments.
Some may even opt out of lifesaving treatments as they are simply unable to cope with the loss of household income. While some social welfare schemes and health insurance policies do include daily income hospital allowances, these are limited in their period of coverage (i.e. only when patients are hospitalised and not when they are recuperating at home), as well as their reach (only certain patients are eligible).
We, therefore propose that at least six months of medical leave is made available to all employees who have been diagnosed with cancer in Malaysia. Temporary work disability benefits through the Social Security Organisation (Socso) should also be extended to cancer patients throughout their treatment and recuperation period as a form of income protection. This temporary disablement benefit should also be made available to those who are self-employed or working in the informal sector via a voluntary social insurance scheme.
The limited employment protection policies for cancer survivors in the country often present major issues towards successfully returning to work, whereby cancer survivors often face a lack of workplace accommodations, such as time off work to attend their hospital follow-ups, and workplace discrimination and stigma, including discriminatory hiring practices.
Besides introducing legislation to prevent workplace discrimination, employers can be encouraged to hire and retain people with cancer through hiring incentives and tax benefits for every employee with cancer who is employed.
3. Financial navigation programme
Various agencies, including patient support groups and religious bodies, do provide financial assistance to eligible cancer patients. However, patients often do not know where they can obtain financial help despite the existence of these programmes.
Thus, investing in a financial navigation programme to connect patients to financial resources should be prioritised as it represents a low-hanging fruit to reduce the financial burden faced by cancer patients.
Financial navigators can aid cancer-stricken households in budgeting and financial planning for their cancer care, assist in required paperwork for financial assistance, and most importantly, connect eligible patients to existing financial resources.
Many cancer-stricken households in Malaysia have been, and will continue, to struggle to cope with the financial impact of their cancer diagnosis. The financial strain may have been exacerbated by the current Covid-19 pandemic, that has left many households without a source of stable income.
While some interventions are in place to address the financial impact of cancer in the country, there is an urgent need to improve and expand these strategies to holistically protect the financial well-being of cancer patients and their households.
Yek-Ching Kong is a research associate, and Nirmala Bhoo-Pathy is a public health medicine specialist in cancer control and cancer policy, and associate professor of epidemiology in Faculty of Medicine, University of Malaya.