Tackling financial toxicity related to cancer care in Canada

KEY POINTS

• Burdensome direct and indirect financial costs related to a diagnosis of cancer affect many people in Canada and can contribute to poor health outcomes.

• People with low incomes are at greatest risk of financial burden and related consequences.

• Within Canada’s health care systems, many direct costs related to cancer treatment — such as outpatient medications and home care services — are not publicly funded, with considerable variation by province.

• Indirect costs related to cancer include loss of income and costs related to travel, home modifications, child care, and caregiving.

• Efforts to mitigate financial burdens related to cancer in Canada should encompass the patient, care centre, and governments.

An estimated 33%–40% of patients in Canada report financial distress following a cancer diagnosis, including worrying about mortgage payments, depleting their savings, and returning to work before being physically ready.^1,2 Financial toxicity, which refers to the direct, indirect and emotional costs to patients following a cancer diagnosis, is increasingly recognized as a risk factor for poor health and cancer outcomes.¹ We discuss how financial toxicity can manifest for patients with cancer in Canada and how to address it.

Although Canada’s health care systems offer free primary and hospital care to residents, people with cancer often face substantial costs that must be paid out of pocket, including those for cancer drugs and treatments, at-home medical equipment, home care, and nutritional supplements. Unlike drugs and services provided in hospital, at-home health services and take-home prescription drugs are not required to be publicly funded under the Canada Health Act.^1,3 The proposal for the Canada Pharmacare Act frequently references the cost of cancer drugs as an example of the burden of drug costs for people in Canada and the need for more comprehensive, national drug funding.⁴ However, despite ongoing advocacy, pharmacare legislation has not been passed, which means that other approaches to mitigate the financial toxicity of cancer-related outpatient treatment must be sought.

Public funding available for take-home cancer drugs ranges from 64% in Prince Edward Island to 94% in Saskatchewan.⁵ People in Canada can use private insurance plans, provincial catastrophic drug funding programs, and support programs offered by drug companies to pay for unfunded cancer drugs. However, only 60% of people in Canada have private health insurance; these often have maximum payouts, require deductibles or copays, and have complicated and lengthy application procedures.^3,6 Thus, many patients with cancer bear partial or full costs of medication. Take-home cancer drugs that are not funded by provincial health care cost $6000 per month, on average.³ This lack of coverage may become an increasingly important issue, given that half of emerging cancer drugs are for take-home use.⁷

Beyond ongoing advocacy for universal pharmacare in Canada to ensure increased access to a broad range of publicly funded drugs, cancer-related financial toxicity could also be reduced through more comprehensive federal and provincial policies on costs for home care and medical equipment. Funding of home services is at the discretion of provincial health authorities, resulting in many of these costs being borne by cancer patients and their families.³ Considerable variation exists between provinces on the eligibility and subsidization of home care services and medical equipment.⁸ Although private insurance plans may fund these services, most people in Canada have access to private insurance only through employment; patients with cancer who reduce their working hours or leave their job are vulnerable to losing such coverage.⁶

Alongside potential drug, equipment, and home care costs, a cancer diagnosis may be accompanied by loss of employment or reduction in income, as well as increased costs related to travel and accommodation for treatment, home modifications, and child care.¹ On average, self-employed and employed patients with cancer experience reductions in earnings of 43% and 24% in the first year after diagnosis, respectively.⁹ The impact often extends beyond the individual with cancer, affecting caregivers and families long after treatment has ended, according to a Canadian study that found that 26% of caregivers took time off work to care for a person with cancer, losing an average of $2402 in income per month.¹⁰

Improving benefit plans to offer financial assistance to those taking time off work for an illness could also, therefore, reduce financial toxicity. Almost half of people in Canada are unsupported by workplace benefits when sick, and many workplace benefits do not cover the duration of typical cancer treatment.¹¹ Many people who take time off work after a cancer diagnosis must rely on publicly funded benefit programs, such as Employment Insurance (EI) sickness benefits.¹¹ This program provides 26 weeks of coverage, which seldom covers the duration, complexity, and ongoing toll of cancer treatments.¹¹ Patients with cancer report that the income obtained through EI sickness benefits is not enough to alleviate financial distress; the current maximum monthly amount that can be received from the program is well below the Canadian poverty line.¹¹ In addition, cancer is often not considered a severe or prolonged disease by the Canadian Pension Plan (CPP) disability benefit program, which means patients with cancer who may be otherwise eligible are excluded from receiving these benefits.¹¹ Expanding the requirements for the CPP disability benefit could provide an income to patients with cancer whose symptoms or treatments prevent them from returning to work within the current 26-week window of the EI sickness benefit program.

Cancer care centres could also play a role in mitigating financial toxicity. Implementation of measurement tools such as the Patient Self-Administered Financial Effects questionnaire (P-SAFE) and the Comprehensive Score for Financial Toxicity (COST) may help identify at-risk patients and connect them with supports and resources. Navigation services for public benefit programs have been found to be effective at reducing financial-related stress for patients with cancer in the United Kingdom.¹² Similar models in Canada have embedded support services, such as social workers within care centres, but are often undervalued and under-resourced. Navigation services could help patients with cancer navigate applications for EI sickness benefits and CPP disability benefits, cancer support funds, or emotional support programs. Transportation to and parking at care centres also contribute to out-of-pocket expenses, particularly given the need for repeated visits for certain treatments such as daily radiotherapy. Free or low-cost transportation and parking at care centres may also help alleviate the burden. If resources are limited, services and transportation and parking benefits could be focused on patients with greater need for financial relief.

Financial toxicity is a contemporary issue in Canadian cancer care that has the potential to overwhelm a large number of people, given projected increases in cancer incidence in Canada,¹³ the high costs of novel cancer treatments, and rising costs of living. People on low incomes are at greatest risk of financial burden and related consequences, including poorer health outcomes. Calls for health system innovation and transformation must not overlook the need for supports to manage the financial burden of cancer for patients and their families.