A cancer diagnosis is costing Canadians more than their health

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Thirteen years after she was diagnosed with an aggressive form of breast cancer, Julie Booker and her family are still feeling the lingering financial impacts.

Booker, who was 46 when she was diagnosed, stayed at home to care for the family’s four children at the time while her husband worked. They did not have private insurance and Booker was shocked at the cost of many things associated with the cancer diagnosis — prosthetic breasts among them.

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She remembers being at a store and learning prosthetic breasts cost $500 each. Provincial funding covered about “half of one” she said.

“I am at the store, they are $500 and I have to call (my husband) and say ‘What should I do?’” She knew that and other expenses would strain the family’s budget. And they did.

Some of those expenses included $2,000 a month for drugs, hearing aids after chemo damaged her hearing, and wigs after her cancer treatment caused permanent hair loss, as well as parking fees and more.

They never formally tallied up the cost: “We didn’t want to know because it was too much. We were taking funds out of our possible retirement. Now we are in that phase and it is not good.”

Booker’s story reflects a recent report from the Canadian Cancer Society (CCS) that found a cancer diagnosis costs the average patient nearly $33,000 over their lifetime. This week, in conjunction with World Cancer Day, CCS released a survey suggesting Canadians are increasingly concerned about the financial implications of a cancer diagnosis.

The survey, conducted in partnership with Angus Reid, found that a high number of working-age Canadians fear a cancer diagnosis would “rob them of a stable financial future.” According to the survey, nearly 80 per cent of working-age Canadians fear that they would struggle to save for retirement if faced with a cancer diagnosis and the resulting out-of-pocket expenses. Those costs can include prescription drugs, homecare, assistive devices, family care, travel-related expenses, accommodations and more.

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The survey also found that people were worried a cancer diagnosis could impact their job prospects with 28 per cent saying they would likely lose their job and 42 per cent saying they would likely miss a chance to advance their career or be demoted. Sixty-six per cent of respondents said they would likely have to take significant unpaid leave.

“Being forced to put retirement savings and careers on hold to deal with the immediate out-of-pocket costs of a cancer diagnosis can have lasting impacts long after the cancer has been treated or cured. Cancer takes enough from us — it shouldn’t also strip us of our financial future,” said Dr. Stuart Edmonds, executive vice president of mission, research and advocacy at the Canadian Cancer Society.

Those concerns come at a time when cancer incidence is on the rise among young adults.

Booker said she didn’t even consider some treatments that would have helped her recovery — including extended psychological support, physio and rehab — because of the cost. “We never looked into it because we couldn’t stretch (our budget). It was just not on the table for me.”

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Booker now operates a mobile wig business, serving many cancer patients. That and her advocacy work have shown her that many people are struggling with the costs associated with cancer. Some are forced to make dangerous choices.

“I have lost clients (in her wig business) because they can’t afford to pay for drugs. It is shocking but it is true.”

The province covers many cancer drugs, but not those taken at home, said Hillary Buchan-Terell, manager of advocacy for Ontario with the Canadian Cancer Society. While IV chemo infusions given to patients in hospital are paid for in Ontario, oral formulations are not, said Buchan-Terrell. Most other provinces cover their costs.

Ontario’s Trillium Drug Program for catastrophic drug costs might cover them, she said, but there is significant paperwork involved, as well as deductibles and copayments, which means people still end up paying out of pocket. She said the CCS has been advocating for years for the system to be changed.

“It is unfair that in other parts of the country, people don’t have to think twice (about the cost of take-home cancer drugs). We really want to see our universal health care system be more universal and include those costs so people are not paying out of pocket.”

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Cancer physicians and patient advocacy groups have also been critical of the lag between Health Canada approving new cancer drugs and provinces agreeing to pay for them. Patients without supplemental insurance are often unable to access costly drugs that could extend or improve their lives, they say, unless they are part of a charitable program from the drug company.

Booker, meanwhile, has additional reasons to hope there are changes in the out-of-pocket fees cancer patients face: One of her daughters carries the same gene she does that puts her at higher risk for breast cancer.

“I worry for people like my children. More and more young adults are being diagnosed with cancer. We need to be vigilant, to spend more on prevention, and to bring the cost of drugs down.”

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