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Lack of public or private insurance, incomplete drug coverage or just plain sky-high prices for drugs that treat rare diseases are some of the issues preventing many Canadians from accessing much-needed prescription drugs

This spring, a federal advisory council will release a report that could upend Canada’s fractured system for paying for prescription drugs.

The Advisory Council on the Implementation of National Pharmacare, led by former Ontario health minister Eric Hoskins, is expected to provide a pharmacare blueprint that the federal Liberals can brandish during their re-election bid in October.

The council’s report will be the latest in a long line of studies that have examined Canada’s patchwork of private and public insurance plans and found them wanting. But despite those past condemnations, the status quo has persisted, forcing some patients to pay out of pocket for life-saving drugs in an otherwise universal health-care system.

Who is the current approach leaving behind? And what do their stories tell us about the gaps in the system?

The patient: Shailynn Taylor, a 23-year-old university student with spinal muscular atrophy, a severe neuromuscular disease, living in Calgary

The gap: No national strategy for expensive drugs to treat rare diseases

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Shailynn Taylor.Todd Korol/The Globe and Mail

For most of her life, growing up in Moose Jaw, Shailynn Taylor tried not to get swept up in the hope that a new drug might reverse her degenerative disorder.

By the time she was in her 20s, she considered herself lucky for living so long, despite no longer being able to walk or lift her arms above her shoulders or unscrew the lids off jars.

But when she moved to Calgary in 2015 to study criminal justice at Mount Royal University, a doctor told her that her relatively good fortune was coming to an end.

“You have three or four good years left. Do whatever you want to do,” she remembered the doctor telling her.

“That was really when I started paying more attention to Spinraza.”

Spinraza, also known as nusinersen, is the first-ever treatment for spinal muscular atrophy (SMA,) a genetic disorder that is believed to affect about 500 Canadians.

What followed for Ms. Taylor was a distressing odyssey that illustrates how all the players in Canada’s prescription-drug system – including provincial governments, private insurers and pharmaceutical companies – can do a poor job serving patients with rare diseases.

Spinraza came with a sticker price that put it beyond the reach of all but the wealthiest Canadians: $708,000 in the first year, and $354,000 for every year thereafter.

Ms. Taylor began by applying through her parents’ private insurer, Great-West Life. As teachers in Moose Jaw, they had good coverage.

But the insurance company rejected her application and two appeals because, as Ms. Taylor understood it, Great-West Life contended that there was not enough scientific evidence to support paying for Spinraza for adult patients.

That is true – up to a point. The two randomized controlled trials that led to the drug’s approval were done with babies in one case and children between the ages of 2 and 12 in the other.

The Canadian Agency for Drugs and Technologies in Health (CADTH), the independent body that advises the provinces and territories on whether to cover new drugs, recommended in March of this year that Spinraza be covered by public plans only for children 12 and younger who had never been able to walk because the evidence was strongest in that group.

Nonetheless, Health Canada approved the drug in the summer of 2017 for all ages, and some adult patients who received it outside gold-standard trials were gaining muscle strength or at least not declining as precipitously as expected.

Liz Kulyk, a spokeswoman for Great-West Life, said by e-mail that for privacy reasons the company could not comment on Ms. Taylor’s case. But she said some workplaces insured through Great-West Life do cover Spinraza for adults while others do not – an example of the vagaries of private drug coverage in Canada.

Ms. Taylor also didn’t qualify under the exceptional access program in Saskatchewan, which was still her home province, even though she was studying in Alberta.

At the time, Spinraza was so new that Saskatchewan – like all provinces – was still waiting for the drug to wend its way through the CADTH process and pricing negotiations with the drug’s Boston-based maker, Biogen.

Saskatchewan announced last month that it would break with CADTH’s most recent recommendation and cover Spinraza for all SMA patients – regardless of age – making the province only the second, after Quebec, to take that step.

Saskatchewan’s decision came more than a year after Ms. Taylor’s friends and family, fed up with the delays, raised more than $180,000 – approximately $112,000 of it through a GoFundMe campaign – so Ms. Taylor could begin buying doses of Spinraza herself, even though she couldn’t pay for it in perpetuity.

However, she needed to have received at least one dose of Spinraza to qualify for a coveted slot in a clinical trial for an experimental oral drug called risdiplam.

That meant convincing Alberta Health Services (AHS) to make an exception to its general rule that privately purchased drugs not be administered in a public hospital. Spinraza is injected into the spinal cord, much like an epidural, making it a delicate procedure performed only in hospital.

AHS agreed to administer one dose at the South Health Campus hospital in Calgary – then balked when Ms. Taylor asked for three more. She had to: On the eve of joining the risdiplam trial, she learned that the entry criteria had been changed from one dose of Spinraza to four.

After successfully fighting AHS and Spinraza maker Biogen, which, according to Ms. Taylor, tried to make her pay the full price, $120,000, for her third and fourth doses after charging her half-price for the first two, she is now receiving risdiplam for free through the trial. (A Biogen spokeswoman said the company could not comment on her case for privacy reasons. A spokesman for AHS said the same, adding that Alberta hospitals evaluate requests to administer medications purchased privately on a case-by-case basis.)

In the meantime, Ms. Taylor is heartbroken to see her friends with SMA fall into the same coverage gap she did. “It’s just so wrong,” she said. “People with SMA are so desperate and in such a vulnerable place, and there’s a treatment sitting on a shelf. But unless you’re the richest of the rich, you can’t access it.”

The patient: Mike Schmidt, a 48-year-old server and diabetic living in Toronto

The gap: No private or public insurance

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Mike Schmidt.Tijana Martin/The Globe and Mail

Mike Schmidt falls into the widest – and mostly widely known – gap in Canada’s current system for paying for prescription drugs.

As a long-time restaurant server, the Torontonian has never had workplace benefits. As a fully employed middle-aged man, he is neither poor enough nor old enough nor young enough to qualify for Ontario’s public drug programs.

Mr. Schmidt is the quintessential uninsured Canadian.

For most of his life, that didn’t matter much. He rarely needed prescription drugs, save for the occasional antibiotic, which he could easily pay for with the money he made at a downtown jazz bar.

Then, about four years ago, he developed what appeared to be Type 2 diabetes. It was the last thing the 135-pound marathon runner expected when his girlfriend took him to a walk-in clinic for what he presumed was a urinary tract infection.

After running a few tests, the clinic called him at home and told him to go straight to the emergency room: His blood sugar was off the charts.

He was eventually diagnosed with latent autoimmune diabetes in adults, or LADA, a version of the disease that bears a closer resemblance to Type 1 diabetes, which is usually discovered in childhood, than it does to Type 2, which is associated with obesity and inactivity.

Mr. Schmidt started taking metformin ($41.40 for a 100-day supply) and gliclazide ($37.40 for 100 days) to control his blood sugar, as well as ramipril ($22.81 for 100 days) to protect his kidneys. They were all relatively cheap generic pills and, for a time, they worked.

Three years later, the metformin and gliclazide were no longer a match for his blood-sugar spikes. “I went down to 115 pounds because every time I ate food, my blood sugar would go up," he said. "I was getting scared to eat.”

He was almost relieved when he became an insulin-dependent diabetic. With daily injections, he regained control of his blood sugar – but at a financial cost.

Lantus, the slow-acting insulin he injects every night, costs $118.87 for five pens. He goes through one pen every 16 days. Humalog, the fast-acting insulin he injects before meals, costs $83.03 for a 30-day supply. He is still taking the ramipril, too.

He also pays $85.99 for a box of 100 glucose strips to test his blood sugar and about $40 for 100 of the tiny needles he uses for each finger-prick test. He tests his blood, on average, five times a day.

He earns enough to afford these out-of-pocket costs and considers himself lucky, especially given the significant price increases for insulin in the United States.

Still, if he needed surgery or chemotherapy instead of insulin to keep him alive, his costs would be covered by Canada’s universal health-care system.

“It is kind of ridiculous, especially for something like this,” Mr. Schmidt said of his bills for insulin and testing equipment. “It’s life-saving.”

The patient: Natalie Brown, a 33-year-old woman with severe asthma, fibromyalgia, diabetes, anxiety and depression, among other ailments, living in Halifax

The gap: Incomplete government drug coverage for patients with multiple chronic conditions

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Natalie Brown.Riley Smith/The Globe and Mail

Natalie Brown is the kind of patient who, in theory, should never have to pay out of pocket for her prescription medications.

The Haligonian’s constellation of chronic illnesses have left her too sick to work, meaning she qualifies for the Nova Scotia Department of Community Services Pharmacare Program, which provides free medications to the poor.

Nevertheless, Ms. Brown estimates she spends about $300 a month on drugs that five separate specialists have instructed her to take – but which Nova Scotia’s pharmacare plan does not cover for her.

There is the inhaler of Spiriva for her asthma (covered only for chronic obstructive pulmonary disease, not asthma) and the prescription-strength Reactine for her allergies (covered only for patients with hives and lesions, which she doesn’t have) and the prescription-strength Imodium for her gastrointestinal illness (generic versions are available and covered – news to Ms. Brown).

There is also the Cymbalta prescribed for her depression and anxiety (generic versions are covered for chronic pain, not major depressive disorder) and the Ativan she takes as needed for panic and anxiety (regular tablets are covered, but not the under-the-tongue kind that Ms. Brown was prescribed because they are gentler on her stomach) and the Glumetza (a long-acting version of the diabetes drug metformin, also easier on her stomach, which isn’t covered at all).

“It’s very, very difficult,” she said. “I have gone without my medication. I’ve skipped days to make it last longer. I’ve taken half a pill instead of a full.”

There are often good reasons for public drug plans, including Nova Scotia’s, to restrict what they pay for. Governments try to limit their rosters – known as formularies – to drugs with the best evidence and prices.

A few cases in point: The under-the-tongue version of Ativan “is not proven to be more effective and is considerably more expensive” than the kind patients swallow, according to a spokesman for the Nova Scotia Department of Health and Wellness. Cymbalta, also known as duloxetine, was found by a national expert committee to be no better at treating depression than other, cheaper alternatives, the spokesman added.

Doctors are not always aware of these complexities. They don’t necessarily ask patients how they pay for their prescriptions – a gap that is especially pronounced for patients such as Ms. Brown, who see multiple specialists and take multiple drugs.

“I’ll be honest,” said Alexis Goth, an internal medicine specialist who sees Ms. Brown at an integrated chronic care clinic outside Halifax, “I didn’t realize she was on so many things that aren’t covered.”

Dr. Goth, who spoke to The Globe and Mail with Ms. Brown’s permission, said she makes a point of asking patients about their insurance coverage when she prescribes medications, but in Ms. Brown’s case, the 25 or so injectables, inhalers, pills, gels and lotions she some times requires were prescribed outside Dr. Goth’s clinic by Ms. Brown’s family doctor, immunologist, respirologist, cardiologist and endocrinologist.

Despite having to rely on family for help with her drug bills, Ms. Brown said she feels luckier than some other complex-chronic disease patients because, whatever its imperfections, Nova Scotia’s public pharmacare plan still covers most of the medications she needs.

But her case is a reminder that even patients who qualify for provincial pharmacare are some times left in the lurch financially – something that doesn’t happen in Canada when health care is delivered in a hospital or doctor’s office instead of a pharmacy.

The patient: Renee Kaiman, a 38-year-old mother of two with metastatic breast cancer, living in Toronto

The gap: No coverage for take-home cancer medications

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Renee Kaiman.Christopher Katsarov/The Globe and Mail

The first time Renee Kaiman was diagnosed with breast cancer, in 2015, she underwent chemotherapy, a double mastectomy and radiation, all without anyone so much as mentioning the cost of her care.

Two years later, when she learned that her cancer had returned and spread to her bones, neither the public system nor her private insurance plan would pay for her treatment, forcing her into a war with her insurer akin to the battles many Americans fight in their private health-care system.

At one point, Ms. Kaiman cold-called the office of her insurance company’s chief executive officer and reached an assistant.

“I started bawling my eyes out,” she recalled. “I said, ‘I have two little kids. If you want to come to my house and tell my kids that their mother’s life is not worth saving because you need to keep group premiums down, then please come to my house.’ ”

What changed for Ms. Kaiman, a married mother whose children are now 7 and 5, between the first and second occurrences of her cancer is that the second time she required a take-home oncology drug called Ibrance, or palbociclib, to keep her metastatic disease at bay.

Ontario is one of six provinces where oral cancer drugs are not routinely covered the way intravenous chemotherapy delivered in hospital is. (The others are Quebec, Nova Scotia, New Brunswick, Prince Edward Island and Newfoundland and Labrador.)

Ms. Kaiman’s private insurer – which she does not want to name for fear she will need the company’s help some day – refused to pay for Ibrance, despite the fact her plan had no annual maximums or lifetime limit.

Theoretically, she should have been able to turn to the Trillium Drug Program, Ontario’s plan for patients who are not otherwise insured and who incur “catastrophic” drug bills.

In 2017, Ibrance cost about $7,200 a month, according to a spokeswoman for Princess Margaret Cancer Centre in Toronto, which agreed to answer questions about Ms. Kaiman’s case with her permission. The price has since come down to about $6,300.

Ms. Kaiman would have to keep taking Ibrance pills for as long as they prevented her cancer from spreading.

Unfortunately, she did not meet Ontario’s criteria for the drug, which is reserved for postmenopausal women. The test subjects in the major clinical trials for Ibrance had either reached menopause naturally or been thrust into early menopause by having their ovaries removed. Ms. Kaiman was taking an injectable drug that put her into chemically induced menopause, but that still did not make her eligible for coverage.

So she fought her private insurer instead. She appealed her rejection and appealed it again, until the company capitulated and agreed to pay for Ibrance for one year – and not a day longer, cutting her off in December.

Now she is receiving Ibrance for free through pharmaceutical company Pfizer’s compassionate access program. So far, the pills are working. Her cancer has not spread, and she is feeling well.

She remains troubled by how the lack of routine coverage for take-home cancer medications must hurt patients who, unlike her, do not possess the English skills or family support or moxie to take on a recalcitrant private insurer.

“I live in a country that has amazing health care," she said, "And we’ve been paying into private insurance for years and years and years. Then you can’t access what you need to access, which is mind-blowing.”

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