The high cost of cancer
Illness leaving Cape Bretoners with no means of support
GLACE BAY — Theresa MacKinnon had to wait 14 months to get the computerized tomography scan (CT or CAT scan) that completely changed her life.
MacKinnon, 61, has worked steadily since she was 16 years old, most recently as a fisher. She's used to making her own way and earning a solid living. But in February that all changed.
“I had to go to Inverness (to get the scan),” MacKinnon told the Cape Breton Post.
“I live in Glace Bay now and my doctor is in Neils Harbour because I can't get a doctor here. I finally get in after 14 months and she called me two days after the CAT scan. She said, ‘We found the problem from the accident and we also found something else. There's tumour in your lung and I can tell you right now that it's cancer.'
“My world fell apart.”
‘HELL OF A RIDE’
In the case of Cordella Campbell of Sydney, she chuckles at the irony of finding herself in the situation of being a health care provider who now needs health care treatment herself.
Campbell had been sick for about a year-and-a-half before she was diagnosed with colon cancer. She expected to return to work as a continuing care assistant in Membertou soon after she had surgery in June to remove a section of her bowel. But cancer had other plans for the 56-yearold.
“I thought once it was removed, that was it,” she said. “But the doctor said I needed chemo to prevent it from moving to other parts of my body.”
She was on Employment Insurance sick benefits but that only lasted for 15 weeks. She tried to open a regular claim but soon learned that she couldn't, that she would have to return to work and apply at a later date.
But she couldn't return to work before completing her treatments, which are expected to go on for some time yet. This has left her without an income. She applied for Canada Pension Plan Disability but was turned down because she wasn't considered sick enough.
“It's very frustrating. You're not feeling well to begin with, you're tired and you're getting treatments. It's been awful. Something has to change. It's ridiculous. It's been a hell of a ride. You think the government would have some kind of program to help you. We're not talking about the common cold here.
“It's a pretty scary time in my life and having that financial stress on top of it is just crazy.”
MANY PROMISES
The current federal Liberal government promised earlier this year to raise EI sick benefits to 26 weeks but not until the summer of 2022. Federal NDP MPs have requested that the benefits be extended from 15 to 50 weeks. The federal Conservatives are promising a year of sick benefits as part of its election platform.
But for now, EI sick benefits remain at 15 weeks.
Those needing support for longer than 15 weeks may turn to the Canada Pension Plan Disability plan. The most you can earn on this is $1,175 a month, but most get less than $800 or are refused altogether. Even those with life-threatening cancers have been refused CPP Disability because their condition was not deemed serious enough.
With average rents in some parts of the province more than $2,000 a month, a person lucky enough to receive a full disability payment wouldn't even have enough for a month's rent, let alone other bills such as food, vehicle expenses and medical fees.
STORY ALL TOO COMMON
Both MacKinnon and Campbell have spoken to Cape Breton Cancer Centre's social worker Tom MacNeil about their financial headaches but for MacNeil these are stories he has heard all too often from far too many people.
In his job at the cancer centre, MacNeil regularly sees cancer patients who are not receiving any financial support when they need it the most. He wants that to change, not only for MacKinnon and Campbell's sake, but also for the thousands of other people in similar situations across Canada.
“What I was noticing is that people had a sense of diminishment about themselves because of the circumstances they found themselves in economically, independent of the cancer experience,” he said.
“I felt people (were feeling) my cancer is worth only 15 weeks but what was coming across to me was that my life was only worth 15 weeks. There was no support system — 15 weeks and I have cancer and that's all that's to it. That's all I'm going to be offered.”
Back in 2017, MacNeil and Jessica Dilney began working on a study about the problems experienced by those who can't work because of illness and how they are treated by the present EI and CPP system.
Their research was brought to the attention of Dr. Ambreen Sayani, Ph.D, a critical qualitative researcher with a background in surgical oncology who specializes in studying inequities in the cancer care continuum.
Together they produced the study, “My Cancer Is Worth Only Fifteen Weeks? A Critical Analysis of the Lived Experiences of Financial Toxicity and Cancer in Canada.”
It was published in August in the International Journal of Health Policy and Management, a prestigious peerreviewed journal.
Sayani, based in Toronto, said the final results of the study didn't surprise them.
“This was what we expected to find,” Sayani said in a recent phone interview.
“I don't think this is a one-off finding. I think we need better in terms of how income is distributed across society. We have increasingly over the past few years seen income inequality just get worse and worse in society. That has implications.”
LIFE WITHOUT MONEY
“You still have all of your bills to pay. Life doesn't stop because you get cancer.”
Those words are from an unidentified female with breast cancer who took part in the study. This particular person was denied Canada Pension Plan Disability, as well as Employment Insurance. She did not receive short-term or long-term disability through her work although she did have a drug plan and she did receive some help from the Cape Breton Cancer Fund.
This woman went 32 weeks without any income at all.
Yet, during a time when illness made her unable to work, she was still expected to pay her rent/mortgage, car bills, electricity, heat and food.
In addition to wanting the EI sickness benefit extended, MacNeil said the Canada Pension Disability needs to be improved as well by providing recipients with at least enough income to support themselves.
“You're tired, you're sick, you're in pain,” said MacNeil.
“And you're adding insult to injury almost living on this low amount of money. It's almost like we're losing the context of what people who are affected by this. They're ill and they don't have enough money to live because they're ill … I think cancer does affect one's self-esteem but I think being forced on a low income is also affecting their selfesteem.”
For Theresa MacKinnon, it means trying to figure out how she's going to survive until or if she returns to work.
“I want to go back to work but I have to live until then. I don't have a lot of family and you can't expect other people to give you money to keep you going. I worked all those years and I made good money and here I am, 61, and nothing.
“That's my story. It's not great.”