You can’t look at Ida Deslandes without knowing that something is wrong.
She lost her right eye and nose to skin cancer and breathes through a hole inserted into her sinus on her forehead near where the bridge of her nose once was. The 59-year-old Smithville, Ont. woman admits through tears that it’s been tough living with her facial disfigurement these past four years. The stares and hurtful comments from strangers and neighbours are painful. Yet what’s even more stressful are the debilitating financial costs that came with her cancer diagnosis.
Fighting her cancer has just about drained her retirement savings and resulted in the bankruptcy of her apparel business. Six facial surgeries and eight weeks of daily radiation meant spending thousands on out-of-pocket expenses such as parking fees, gas, meals and day care for her two border collies. At one point, she and her husband’s medications rang in at nearly $800 per month. Now Deslandes’ prescription costs are covered by Community Care Access Centre because of the regular cleanings to her sinus opening thanks to a visiting nurse.
“When our retirement comes, we have nothing left,” says Deslandes. “We’ve used it all. I think the hardest part was when we had to move last fall. We lived in the country and we weren’t living close to others like we are now. But our landlord had to sell our house and we didn’t have the money to buy it.”
Deslandes and her husband Randy Guarascia each receive Canada Pension Plan disability benefits of $1,100 per month. The rent for their townhouse is $1,300. Deslandes is not sure how she’ll pay for a $37,000 face prosthetic she’s waiting to receive or how she will cover the cost of repairing her dead and broken upper teeth, the result of repeated radiation treatments.
This couple’s story isn’t a unique one. Many Canadians suffer financial hardship while battling cancer. According to a 2010 McMaster University study, Canadian cancer patients see their incomes drop by 26 per cent, a total of about $3 billion in lost earnings nationwide annually. That’s not super surprising given that 40 per cent of those with cancer take leave from work for at least six months, according to a 2012 survey by the Canadian Partnership Against Cancer.
The problem afflicts Ontario and the Atlantic provinces, all of which have outdated legislation around the funding and management of cancer drugs that can be taken at home. While Canada’s healthcare system covers the cost of hospital care for everyone, it leaves many without coverage for prescription drugs, out-of-pocket expenses and significant delays for at-home cancer treatments. Canada’s western provinces treat take-home cancer drugs and those administered in hospital equally.
“They have not woken up to the fact that people can’t afford what they’re being asked to afford in Ontario and Atlantic Canada,” says Deb Maskens, co-founder of CanCertainty, an advocacy group pushing for access to affordable medications. “It’s a nightmare of paperwork and a nightmare from a financial perspective because nobody has a financial plan that includes paying for their own cancer treatment.”
CanCertainty is a 35-member coalition comprised of different cancer associations, patient groups and caregiver organizations that is aiming to change provincial legislation that makes the cost of cancer treatment in some provinces so high. Right now, in Ontario and the Atlantic provinces, if a patient receives cancer medications outside of the hospital, the costs are not covered, resulting in devastating financial burdens for many.
Maskens points out those additional financial hardships are not uncommonly piled on top of already reduced incomes because many cancer patients go on long-term disability during treatment. If you’re self employed, odds are your income could drop to zero.
“You’ve got this huge crash in income and at the same time your expenses have gone up dramatically,” says Maskens. “You have to drive to the cancer centre and pay for parking — it’s this compound financial burden that hits you when you have cancer. And a lot of people with good jobs think I’m good to go, I’ve got benefits but benefits increasingly don’t cover the full extent of cancer meds. A lot of people I speak to say I have an annual cap of $5,000 per year, well, that’s not even going to get you through your first month. People are falsely assured they are going to be covered.”
An advanced kidney cancer patient, Maskens co-launched CanCertainty after overhearing other cancer patients at Princess Margaret Hospital state that they had no idea how they would pay for their drugs.
“I thought this is a human rights issue,” says the Guelph, Ont. resident. “This is just wrong that I get to live because I had private insurance because I had a good employer.”
Medical advancements change how treatment happens
Historically, cancer treatment comprised of surgery, radiation and chemotherapy in a hospital setting. About 10 to 15 years ago, that changed but the funding and assistance programs haven’t. Today, with up to 60 per cent of drugs in the pipeline being in pill or self-injectable form, Maskens says many people are taking cancer medications in the comfort of their own homes.
That’s the case for Becky Knifton, a 36-year-old single mother, who will take daily pill doses of chemotherapy for the rest of her life to keep her leukemia under control. As an employee for a small insurance firm, Knifton has benefits that cover the cost of her $4,000 per month drug treatment. She also knows the insurance industry and is worried that one day she’ll be told her cancer drugs are no longer covered.
Insurance companies can reassess claims at any time and commonly place limits on coverage for medications where none existed before. Diagnosed in January, Knifton required special approval from her insurance company to get her meds covered. That approval is good for six months and then she has to re-apply again.
“It’s mind numbing,” says the Shakespeare, Ont. resident. “I used to get really upset and couldn’t sleep and I’d be thinking, am I going to have to move back in with my parents who are getting ready to retire? People should be aware that just because they have drug coverage they won’t always be covered. There are loopholes in everything. If they can find a way to reduce their costs they will.”
Laurie Campbell knows all too well tales of Canadians who struggle financially because they’ve had to pay a high price for illness, especially those with cancer.
“No matter how difficult it is, our experience is that people need to put their debt aside and try not to worry about it while they’re going through something so significant,” says the CEO of Credit Canada Debt Solutions. “It impacts their ability to recover because they’re not concentrating on getting well. They’re stressed out about being financial shackled.”
Campbell recommends speaking with creditors and telling them about your medical condition, which should work to hold off collections. You may have to go back every month but if you can provide documentation proving your illness most creditors are reasonable and will place a moratorium on debt payments.
Another option if talking to creditors doesn’t agree with you is to speak with a not-for-profit credit counseling service, which can do the talking for you.
Deslandes, meanwhile, has explored cancer assistance programs with little success. She figures she’s sent out about 75 letters looking for help from various service organizations, charities and philanthropists. She’s scheduled for another major surgery in September to have her face sculpted in preparation for the prosthetic, but has no idea how she will get the funds to cover its cost, which she estimates at $20,000 to $25,000. Her face prosthetic will artificially recreate her right eye, cheek and nose. She’s received about $7,000 so far from local fundraising efforts. The Royal Bank is accepting donations for Deslandes. (Transit #01752, Account #5050745).
“The sad thing,” she says, “is the government will tear your face apart, get rid of your cancer but give you no means to support your recovery. The rest is up to you. You’re on your own. There’s nowhere to go.”