The Canadian Breast Cancer Network surveyed more than 400 women with a breast cancer diagnosis and found that 80 per cent said they had experienced a financial blow of some kind due to their cancer.

OTTAWA — On top of their physical challenges, breast cancer patients bear a huge financial burden and the federal government should reform employment-insurance benefits to help lift it, a new report says.

According to the Canadian Breast Cancer Network, the financial consequences of a breast-cancer diagnosis can be as stressful as the disease itself, and while women may survive the cancer, they could be struggling with the financial impact for the rest of their lives.

“This groundbreaking report firmly positions breast cancer as an economic as well as a health issue,” said Cathy Ammandolea, president of the advocacy group. She presented its findings Thursday at a news conference on Parliament Hill.

A survey of more than 400 women who had been diagnosed with breast cancer in the past five years found that 80 per cent had experienced some kind of financial hardship from the disease. Losing income because of time off work for treatments and recovery, plus related out-of-pocket expenses means a woman’s breast cancer diagnosis can be a “double whammy” for her and her family, the group said.

The household income of respondents dropped by an average of $12,000; 44 per cent said they used savings to cover expenses and 27 per cent went into debt. Sixteen per cent reported losing their jobs, while others had to quit or go on disability leave because the side-effects of treatment, fatigue and pain prevented them from doing their work.

Linda Glasier, a nurse for 35 years, is one of those women.

“I had to leave my job because I knew I physically would be unable to continue it,” said the resident of Medicine Hat, Alta., who has been battling breast cancer for the past two years. “That was difficult to give up.”

When the 56-year-old quit her job, she lost her insurance benefits, which meant using other means to cover costs.

Drugs taken outside of hospital settings are not always covered by public health plans, so patients either pay out-of-pocket or through private insurance, if they have it. Wigs, prosthetics, child care, and even paying for parking at health-care centres were also cited as extra financial costs by the women surveyed.

“You assume that everything will be covered and you find out it isn’t. It’s a shock,” said Glasier. “You have to go into your savings, it puts a burden on the whole family.”

For breast-cancer patients in rural areas, where chemotherapy and radiation treatments and cancer specialists may not be available, the costs are often even higher.

Lorna Marshall, a college teacher from Nelson, B.C., had to travel hundreds of kilometres to Kelowna and Vancouver for treatments during her two battles with breast cancer.

She was first on sick leave from her job, then short-term disability, and now she’s off work indefinitely. Marshall’s doctor is worried she could easily pick up infections in the classroom but she has her own concerns about returning to work.

“My memory has been severely impacted,” said Marshall, referring to what some patients call “chemo brain.”

“I have a big fear about going back into the classroom because of what I forget.”

A number of women surveyed who did return to work said they could not return to the same position, or salary, that they had before their illness.

The Canadian Breast Cancer Network says helping women cope with the economic costs, and facilitating their re-entry into the workforce is not only good for the patient, but for the entire economy. Making improvements on those two fronts will mean breast-cancer survivors can better contribute to national productivity and be less dependent on the social safety net, the group’s president said.

During meetings with parliamentarians Thursday, Glasier, Marshall and others from the organization pushed several proposals, including the idea of reforming the EI system to extend sickness benefits.

Currently, those eligible for EI can receive benefits for as long as 15 weeks, but the group says that barely gets a woman through one surgery let alone rounds upon rounds of chemotherapy and radiation, which can last as long as a year for some women. Eligibility criteria, the amount paid and the length of EI coverage should all be enhanced.

They are also calling for changes to the compassionate care benefit for family caregivers, better drug coverage, more support for child care and travel expenses, and help for self-employed women.

The group is trying to assemble a task force involving representatives from the federal and provincial governments, the insurance industry, labour unions, large employers and others to try and make some concrete changes.

About 22,000 Canadian women are diagnosed with breast cancer every year and thousands more find out they have cancer of a different kind. They are bearing similar financial burdens to the ones described in the report, says the group, and need the same assistance.