Group asks: why are at-home cancer patients on the hook for chemo drugs?
Why is it that many Canadian cancer patients treated in hospital get their medication for free, but those who are treated at home have to pay for their therapies out of pocket?
That's what a coalition of 35 cancer patient groups, physicians and charities is asking following a report by Cancer Care Ontario that highlights the devastatingly high costs of treating cancer in Canada.
The CanCertainty Coalition says it's unfair that cancer patients in Ontario and the Atlantic provinces cannot get fair and equal access to cancer therapies that are taken at home, noting that patients in the Western provinces see all their medications covered -- however and wherever they are administered.
Few know more about the disparity than David and Deirdre McMillan.
Their daughter was diagnosed with a brain tumour at the age of 22. She was treated in hospital for two months before finally being told she was well enough to be discharged, but would need to continue taking oral chemotherapy medication at home.
"We were sent to the pharmacy, and I distinctly remember someone in the room saying, 'Oh, it's expensive'," David McMillan recalled in an interview with CTV's Canada AM on Monday.
"I said to my daughter, 'Don't worry I have my credit card with me. Maybe it'll be $500, $1,000, I don't know. We get there and we're presented with a bill for $10,000, for one round of treatment."
The family was stunned, but began making a plan for how they would come up with the money.
"Right away, I'm going: 'We'll sell the house. I'll dip into my retirement savings. Whatever it takes.' And then I'm thinking about all the other Ontarians who don't have those options -- what would they do?" said McMillan.
Difference with IV chemotherapy
Fourteen months later, their daughter was in remission and moving on with her life and working as a nurse. But then, Deirdre McMillan was suddenly diagnosed with breast cancer.
That's when they realized there was a completely different system for those treated with intravenous medication.
Deridre says her treatment required her to go into hospital to have intravenous medications administered by nurses. But there were also no worries about who was going to pay.
"I was at the same hospital, the same pharmacy, yet (because) mine was intravenous, it was completely covered. There were no issues. No stress that way. It was a completely different experience," she said.
Deirdre says it's bad enough luck to be diagnosed with cancer; it's worse luck to be diagnosed with a form that needs to be treated with oral medications, because it means added financial stress.
A move to at-home care
Many of the newest chemotherapy drugs are oral drugs, which is leading to more at-home cancer treatment. The irony is that should be a positive move for the system, since it means a hospital bed can be freed up. But the costs are being shifted to patients, says McMillan.
Many fully-employed Canadians have health insurance, but these programs typically cover only a portion of the costs, or have upper-limit caps. And in Atlantic Canada, CanCertainty says only three in 10 residents have private insurance coverage – one of the lowest rates in the country – because many residents are self-employed.
There are provincial programs that can help, such as the Trillium Drug Program and the Exceptional Access Program in Ontario, but the application processes are tedious.
Deb Maskens, who is an advanced kidney cancer patient as well as the co-founder of both Kidney Cancer Canada and the CanCertainty Coalition, says patients often have to wait weeks to hear back from these programs before they can access drugs they desperately need.
And then, patients are still often on the hook for a portion of the costs.
"Six or eight weeks later, they're going to tell you how many thousands of dollars you need to pay," Maskens said. "And yet there are patients like Deirdre – and we don't begrudge you by any means – who are completely covered."
An estimated two in five Canadians will get cancer in their lifetime, but most are "blissfully unaware" of the medication cost issue until it happens to their family, says Maskens.
"When you're a cancer patient you have enough on your mind to have to deal with the funding of it as well," she says.