Understanding the Cost of Cancer
Understanding the Cost of Cancer

While fears about the emotional and physical impact of cancer on our lives are common, we have few first hand reports about the daunting financial burden brought on by cancer.
Research from the Ontario Breast Cancer Community Research Initiative (OBC CRI) indicates that some individuals with cancer are not only fighting their disease but they are also
overwhelmed by unanticipated expenses associated with their cancer treatment.
The OBC CRI researchers interviewed 381 women with breast cancer from four separate project groups – lower-income; young (45 years of age or less); lesbian; and rural – to uncover just what these women had experienced. What do they worry about most?
The result was an up close and personal view of the immediate concerns these women share combined with their insights about the resources they need.

Problems identified

Low awareness of financial impact

Even though we have universal health care, the public does not realize the financial burden of cancer – especially for women who are already marginalized

Work concerns
Women with cancer (particularly those without a partner and/or those who are self-employed) worry about taking time off from work during and after treatment to cope with the side effects

Unexpected additional costs
Women with cancer cannot afford anti-nausea drugs, dispensing fees, transportation and parking fees, child-care and house-cleaning

Insurance and health care system difficulties
Women with cancer had difficulties negotiating unwieldy application processes and eligibility criteria for public and private insurance systems

Unanticipated costs an unwelcome surprise
“A common theme throughout our research projects is that cancer costs are an unexpected and unwelcome surprise for many women,” says Judy Gould, Initiative Director of the OBC CRI.
“Financial hardship makes the burden of treatment even heavier to deal with.”
Gould cites these examples: the cost of transportation to and from treatment, along with parking, accommodation and child care, not to mention lost wages. Rural women have to contend with
paying more for accommodation and travel in order to receive cancer treatments in urban centres.
“The price of supportive care treatment drugs, and prosthetics, can also be overwhelming. Most of these expenses are non-reimbursable – especially if women do not have private insurance benefits,”
adds Gould. Those without private insurance were often shocked to learn just how much antinausea drugs cost. They simply could not afford them.
“These women continue to work when they are sick and fatigued or have to rely on friends and family to help them meet expenses.”

To work or not to work
The four OBC CRI studies reveal that the primary source of income for most project participants is either part- or full-time work. In many cases, taking time off work during debilitating adjuvant treatment is a luxury they cannot afford. For two participants in
the lower-income women study, taking time off work to receive treatment was not an option. Both required hospitalization mid-way through treatment, one for exhaustion, the other for anemia. A related study measuring out–of–pocket costs, found cancer
patients needed to be off work an average of 12.6 days per month, their caregivers an average of 7 days/month (Source: Longo, Fitch, Deber, Williams, 2006).
Single moms, child-free single women and young, rural women in particular described having to make very difficult choices. Not only did they have to decide whether or not to work during their treatments, but they also had to choose between depleting life
savings and not covering treatment expenses.

Barriers to insurance
In the study with lower income women, Gould found that nine of the 14 women had experienced difficulty accessing insurance such as Employment Insurance, Canada Pension Plan Disability insurance or health insurance. Women were dissuaded from applying for, or appealing to, Canada Pension Plan Disability. Four of the fourteen
women interviewed had to take their private health insurance cases to court.

Advice from one who has been there
One participant cut straight to the chase, says OBC CRI researcher Christina Sinding. This participant had heartfelt advice: The way to truly help and support people with cancer is to “give them money.”

A call to action
The financial cost of cancer isn’t going away any time soon. As a result, the OBC CRI researchers call for these immediate actions from coalitions/advocates/groups poised to effect change:
· The public must be made aware that having cancer costs.
· Women with cancer need practical support: child-care, house-cleaning services, a way to cover parking and dispensing fees. They need to know about the free transportation services provided by the Canadian Cancer Society (most of the lowerincome
women we spoke with had never heard of this service.)
· Women need to know about the Trillium Drug Program – a program set up to defray medical treatment costs, visit the Trillium website:
http://www.health.gov.on.ca/english/public/pub/drugs/trillium.html
· Women need the option of flexible back-to-work arrangements.
· Women with cancer need help to understand public and private insurance application and adjudication processes.
As long as people keep talking, and keep working toward solutions, the unspoken financial plight of all Canadians battling cancer can at least be recognized.

Ontario Breast Cancer Community Research Initiative
Suite 950, 790 Bay Street, Toronto ON M5G 1N8
1.416.351.3811 · http://www.womensresearch.ca/programs/obccri.php
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