Financial hardships can be an unexpected burden for cancer patients and caregivers alike. Nine out of 10 Canadian families battling cancer are battling financial debt and 91 per cent of cancer patients in Canada will suffer a loss of income or a rise in expenses.
In 2013, the Canadian Cancer Survivor Network conducted a members’ survey in which we asked cancer patients what they were most concerned about in their cancer journeys. The primary issues cited by patients was the financial burden of cancer and difficulties transitioning back into work.
Shock and frustration regarding the financial cost of cancer was a common theme among the many patients who responded to our survey:
“I had complications and multiple surgeries, which had me off work for three years. I was single, self-employed and had previous employment doing physical work as a home support worker. I had no money coming in and had to spend my savings to live for three years.”
“I received a very small amount of medical financial assistance from the government. I needed to have it supplemented by asking friends and family for assistance, as what the government paid wouldn’t even pay my rent. The government then said I could not receive ‘any’ funds if I was receiving assistance privately.”
“Even when you have a job and benefits, you still take a big hit financially, especially if you are the only wage earner. A lot of us have difficulties making ends meet while working, and when your salary is cut even further, it’s a major juggling act. Also, after cancer the cost of medications are very expensive. If there are changes made in your life that affects your medical plan, you are basically screwed and have to pay for your medications. Again, another juggling act. Do I take the medication and let other things slide, or take the chance that I will get cancer again if I don’t take the medication? In the end you still end up with financial difficulties.”
A study of national wage loss from cancer showed that 91 per cent of households suffer a loss of income or rise in expenses as a direct result of a cancer diagnosis.1 The major costs of a cancer diagnosis and treatment are for things like lack or loss of income, medicines and home health services. Families face many indirect costs and other expenses because of cancer and its treatment, along with their usual bills. For some people, the financial impact of cancer is financially and emotionally devastating. The costs for a person who has cancer can include things like:
- Travel (gas and parking, or transit) to doctor visits, clinics, hospitals, and treatment appointments
- Drugs that are not covered by provincial/territorial formularies
- Lodging (a place for the patient and/or family to stay) during treatment away from home
- Meals during travel or clinic visits
- Extra child care costs
- Lack of or loss of income
- Communication (phone calls, faxes, copies of medical records, etc.) with doctors, friends, and relatives
- Special foods and nutritional supplements
- Special equipment or clothing
Specific factors that cause financial hardship for cancer patients
Barriers to maintaining or returning to work. Canadians that have no contractual or legal right to job security may be at risk of losing their jobs while being treated for cancer or taking a leave to provide care. Medical appointments may be so time-consuming and uncoordinated that holding on to a job becomes impossible. Survivors may be left with conditions that rule out their previous occupations. For example, lack of mobility in the arm and/or shoulder from breast cancer can affect work a person can do.
Gaps in federal programs. The federal Employment Insurance program will pay sickness benefits of up to 55 per cent of an individual’s salary, up to a maximum of (in 2020) $573 per week. However, there are limitations:
- The benefit is only paid for 15 weeks, which is far shorter than the average treatment period for many cancers. A study by the Canadian Breast Cancer Network showed that two-thirds of respondents were away from work for 16 weeks or more during treatment, and the average gap without EI coverage was 23 weeks.
- Not everyone qualifies for the benefit. A person must have worked at least 600 hours in the last 52 weeks before making a claim – a requirement that may be difficult to meet for part-time or seasonal workers, or for those who recently found work after a period of unemployment and were then diagnosed with cancer. Most self-employed Canadians are also ineligible for this benefit. Although the federal government opened up the EI program to self-employed workers in January 2010, most have not opted in.
- If your illness recurs or a second round of treatment is required, you will not qualify unless you have worked at least 600 hours (approximately 16 weeks or four months for a typical full-time job) since your last claim.
Absence of private insurance. Through an employee benefits package, many people are able to draw on sick leave or private health insurance while dealing with cancer. However, some workers have no private coverage of this kind. While the number is difficult to pinpoint, recent studies have estimated that 20 to 30 per cent of Canadians rely solely on government benefit programs or have no coverage at all. Studies also show that Métis and non-status Aboriginals are more likely than non-Aboriginals to be underinsured or have no insurance at all (via “Out-of-pocket spending on prescription drugs”)*. Several barriers can stand in the way of obtaining adequate private insurance:
- A person’s employer may not offer a benefit package or the employee may not have worked enough hours to qualify for benefits.
- A previous diagnosis may make a cancer survivor ineligible for coverage as an individual if she or he becomes unemployed or self-employed.
- Premiums may be considered too costly by self-employed people and others who could opt into group coverage, particularly if they are dealing with other financial challenges at the time.
- Caregivers are usually unable to recover their lost wages when they must miss work to provide care to a family member.
The cost of medical travel. Travel appears to be one of the biggest indirect costs of cancer, particularly for rural Canadians who must travel to larger centres for highly specialized treatment and services. Studies across Canada show that these costs can quickly surpass all other out-of-pocket expenses (via Financial and Family Burden Associated with Cancer Treatment in Ontario, Canada). While some of these expenses can be recovered later, they are nevertheless up-front costs for the patient. The money must be found and paid immediately, sometimes long before reimbursement is received.
These travel expenses take many forms, and hit rural people the hardest:
- Lost wages are an additional challenge for people who must take travel long distances for medical treatment.
- Fuel is a significant and growing expense for rural people.
- A more reliable vehicle may need to be purchased for the many hours of highway travel.
- Accommodation may be difficult to find at an affordable price. Some patients need to be away from their home community for several months – for example, if they are undergoing a bone marrow or stem cell transplant.
- A companion may need to travel with a person who is weakened by illness and treatment, leading to additional expenses and lost wages for a spouse, friend or family member.
- Childcare may be needed, sometimes with little advance notice. If parents have no family support nearby, paid child care will be required.
- Parking can be a significant expense around major treatment centres, where people may spend several hours waiting to see a specialist.
Child care and housekeeping. Parents with cancer may need additional help with child care and household responsibilities while they attend medical appointments or when they aren’t well enough to handle these tasks. This is more of a problem for single parents, but it can also be an issue for two-parent families if both parents are unable to work because one is sick and the other must take care of the children. If a friend or family member can’t step in, it may be difficult to find immediate, affordable help. In extreme cases, the only option may be temporary foster home, or the patient with cancer may die, which burdens the family with a new set of challenges.
Home care expenses. The growing need for home care, particularly during the palliative stage of illness, can greatly add to the out-of-pocket costs of dealing with cancer. While most provinces provide a certain amount of “free” home care to qualifying families, there is no national standard for home care.
Even if a family qualifies for provincial home care assistance, a shortage of home care staff may prevent them from taking full advantage of these services. If their need exceeds what the provincial service can provide, the family may need to pay for private home care. These shortages are often more acute in rural areas. People receiving care at home may also require supplies not covered by provincial health plans, including:
- Supplies for gastric feedings
- Digital thermometers (needed by all children with cancer and adults with low immune status)
- Electric razors (needed by adults predisposed to bleeding)
- Bath stools, walkers and canes
Challenges for Métis, First Nations and Inuit. Aboriginal people with cancer face huge financial challenges:
- The Métis and non-status Aboriginals are more likely than non-Aboriginals to be underinsured or have no insurance at all. At the same time, this population has higher mortality rates from cancer and a lower mean income (Profile of Métis Health Status and Healthcare Utilization in Manitoba: A Population-Based Study).
- Jurisdictional issues present additional challenges for First Nations and Inuit people. They are covered by Health Canada’s Non-Insured Health Benefits program – however, if they live on reserve, they are often ineligible for provincial programs available to the rest of the population, such as home care and palliative care. As a result, health care providers and First Nations/Inuit people often struggle with jurisdictional problems on a regular basis.
Be sure to contact your healthcare provider(s), social worker, government representatives and financial advisor regarding financial information for cancer patients. These people have expert knowledge regarding these types of programs and which financial assistance programs would be most suitable for you.
Caregiving and Financial Hardship
Furthermore, a recent Léger survey fielded by the Canadian Cancer Survivor Network shed new light on the devastating physical, emotional and financial hardship cancer puts on patients and their caregivers. 301 cancer patients and 201 caregivers participated in this survey, making it one of the largest caregiver surveys conducted in Canada. The survey aims to provide new and important information on the caregiver’s role in their loved ones’ cancer journeys.
The results of the survey indicate that caregivers too suffered heavily in lieu of a cancer diagnosis in a loved one. Caregivers reported more difficulties than patients in accessing treatment and essential medications, finding flexible work options and dealing with a significant loss of salary. While one-in-five patients experienced difficulty in finding flexible work options while battling cancer, nearly one-half of caregivers struggled to integrate care for loved ones into their work lives; making management of the disease and maintaining their income incredibly challenging.
The heavy involvement of caregivers in their loved one’s cancer journey points to the critical role they play as cancer care navigators and managers. There is an evident need to provide them, as well as patients, with physical, emotional and financial support.
This section of our website further explores the financial cost of cancer to Canadian patients, survivors and caregivers and provides resources and recommendations for patients and caregivers to help alleviate the cost.
Key Informant Interview: A View From the Front Lines
Financial hardship of cancer in Canada: a call for action
Work and Cancer
The Financial Hardship of Cancer in Canada: A Literature Review