When Karen Formosa was told that she had stage 3 BRAF-positive melanoma last March, there was one question that kept her up at night: How was she going to pay for the $20,000-per-month targeted treatment regimen she needed to stay alive?
“The doctor told me how much the medication was and I got really scared,” the 57-year-old, of Milton, Ontario, says of the drugs Tafinlar (dabrafenib) and Mekinist (trametinib). “I had a daughter and a granddaughter, and I was newly married. I didn’t want to die, but I also had no idea how I was going to afford the drugs I needed.”
Formosa did what most Canadians with cancer do when they are facing huge medication expenses: She applied to a provincial government program for financial help. In Ontario, that is the Trillium Drug Program, available to residents with a valid provincial health card who spend a large part of their income on prescription medications.
At the same time, she contacted her employer’s private insurance provider, Green Shield, desperately hoping that the drug plan she had paid into for 15 years would cover the expensive treatment that would give her a fighting chance against the aggressive cancer. In just two days, Green Shield notified Formosa that it would cover 100 per cent of her prescription costs. Nearly two months later, Trillium let her know that her application had been accepted.
“If I didn’t get that medication, the doctor told me I would be dead in two years,” she says. “I was ready to cash in all of my registered retirement savings. It was awful. You assume that in Ontario — in Canada — lifesaving medications are paid for, but they aren’t. And until something like this happens, you don’t realize how important that coverage is.”
Although Formosa’s story had a happy ending because she got the medication she urgently needed, many patients with cancer are not so lucky. Drugs are covered by the health-care system in Canadian hospitals, but outside their doors that coverage disappears for some. Canadians often see news stories quoting devastated parents who can’t afford lifesaving treatment for their child. Some Canadians are forced to choose between buying food or necessary medications. Some split tablets in half to make them last longer, skip doses or don’t fill prescriptions at all.
This is because some in Canada lack a private drug plan and have insufficient public coverage due to Canada’s “postal code lottery,” an inconsistent framework of public drug plans that offers coverage to everyone in some provinces but only portions of the population in others.
To make matters worse, many drug plans include deductibles and/or co-pays, the list of covered drugs may differ from plan to plan, and private plans may refuse coverage due to pre-existing conditions. Depending on where they live, this can be a big problem for people who need expensive medications.
An example of this is that oral cancer drugs aren’t publicly funded everywhere: There are significant gaps in coverage in Ontario, New Brunswick, Prince Edward Island, Nova Scotia and Newfoundland and Labrador. That means that people with cancer in these parts of Canada are suffering twice: dealing with the shock of having cancer and then the sticker shock of lifesaving treatments.
Due to the frustrations this system breeds among many stakeholders, there have been discussions around universal and public coverage for prescription drugs in Canada since the 1960s. Yet the issue has remained low on the policy agenda — until now.
In last February’s budget, Finance Minister Bill Morneau announced the creation of an Advisory Council on the Implementation of National Pharmacare. Its work led to a proposal titled “A Prescription for Canada: Achieving Pharmacare for All,” which recommends that Canada implement a universal, single-payer, public pharmacare program that would be rolled out over the next eight years. Such a program would make medications available to every Canadian, regardless of how much money they had and no matter where they lived.
The plan is just a recommendation, and while the Liberals in office have committed to a national pharmacare plan, they haven’t committed to the one in the council’s report. Prime Minister Justin Trudeau has referred to the report as a “foundation” for a national pharmacare program. Ultimately, it will be up to the party that wins October’s election to decide whether to move ahead with the council’s plan, change it or scrap it.
In the meantime, Canada remains the only country in the world with universal health care that doesn’t provide prescription coverage for all.
WHAT THE PLAN ENTAILS
Throughout 2018 and into early 2019, a seven-member team led by Dr. Eric Hoskins — a family doctor who left his post as minister of health and long-term care in Ontario to chair the council — travelled across the country, stopping in every province and city. The team spoke with patients, caregivers, health-care practitioners, academics and policy-makers about their experiences with getting the medicine they need and their thoughts on a pharmacare program.
In meetings with the council and with other organizations that put together grassroots gatherings, patients and their families shared their reality: the good that can happen when someone gets the drug they need and the bad that happens when they don’t. Sometimes they brought the stark results of the latter, such as a child whose father was taken by a disease for which he couldn’t afford the lifesaving treatment because of where he lived.
There was also discussion of the cycle of emergency-room and hospital stays that arises from people not taking the medications they need, the impact of drug hardships on emotional wellness and family relationships, and the effects of untreated illness on workplace productivity.
The council’s report found that 20% per cent of Canadians (7.5 million people) don’t have drug insurance — or have inadequate insurance to cover medication costs. Nearly 3 million Canadians were unable to afford one or more of their prescriptions in the past year, despite the fact that 38 per cent of them had private insurance coverage and 21 per cent had public coverage. The council also reported that almost 1 million Canadians cut back on food or heating in order to pay for medicine and about 1 million had borrowed money.
“After hearing from many thousands of Canadians, we found a strongly held belief that everyone in Canada should have access to prescription drugs based on their need and not their ability to pay, and delivered in a manner that is fair and sustainable,” Hoskins wrote.
To determine what drugs would be covered, the council proposed the creation of a Canadian drug agency that would develop a list of “essential” medicines to be covered under national pharmacare as of Jan. 1, 2022. This list of medicines, the report suggests, would be based on “the most commonly prescribed clinically important drugs,” using two lists as a starting point: the World Health Organization’s Model List of Essential Medicines (which has approximately 450 drugs) and the CLEAN Meds list (with 136 drugs) developed by St. Michael’s Hospital in Toronto.
Once the essential medicines list was in place, the council proposes the development of a comprehensive national formulary based on effectiveness and good value for money, to be completed by Jan. 1, 2027. After that, new drugs would be subject to the same approval criteria as they became available. The council also acknowledged the importance of drugs used to treat rare diseases, proposing that a national strategy be developed to determine what rare-disease drugs should be funded and for which patients.
Besides the issue of access, there’s also cost. Pharmacare for all would be an expensive program to implement, costing just over $15 billion per year by 2027 when it would be fully up and running. But there are also savings to be had, the report argues. In early 2022, when national pharmacare would begin to cover essential medications, total Canadian prescription drug spending would be $300 million lower than without pharmacare, because the program would allow drug plans to band together to negotiate lower prices for many drugs, in addition to using other cost-saving strategies. By 2027, drug spending would be $5 billion lower than without pharmacare, the report forecasts.
“A recent study looked at what would happen if out-of- pocket costs were removed from medications for just three diseases — diabetes, cardiovascular disease and chronic respiratory conditions,” the report states. “It concluded there would be 220,000 fewer visits to emergency depart- ments and 90,000 fewer hospitalizations annually — a potential saving of up to $1.2 billion a year.”
How would these savings be passed on to the average Canadian? First, the council proposes to limit out-of- pocket prescription spending to $2 to $5 per prescription, with a maximum of $100 per person or household, which could translate into $350 in annual savings for a family. This is based on the report’s finding that showed that the average family spends about $450 each year on prescriptions.
Canadian businesses are also set to reap some savings under the pharmacare proposal. A business that provides drug benefits to employees would save $750 annually per employee, while employees would save more than $100 per year in drug plan premiums.
But here’s the rub: No one knows for sure how the plan would come to pass, since there’s nothing specific in the report about how the government plans to pay for it.
Brent Skinner, CEO of the Canadian Health Policy Institute (CHPI), believes that the only ones on the hook for the plan will be taxpayers.
“Single-payer pharmacare will disrupt employment- based drug benefits for 23.2 million privately insured Canadians and increase the tax burden for the 13.7 million Canadians who pay 95 per cent- of federal-provincial income taxes,” he said in a post-pharmacare announcement CHPI news release. “These voters have a lot to lose under the council’s plan.”
A VARIETY OF OPINIONS
Just months before an election, it’s easy to be skeptical, guessing that pharmacare may be a little less about Canadians and their drug coverage needs and a little more about a political move to position the Liberals well with Canadian voters. It’s a “perfect document for a federal government looking for a health platform for the upcoming October election,” says Louise Binder, a Toronto lawyer and health-care advocate who serves as a health policy consultant for Save Your Skin Foundation (SYSF).
Pharmacare will certainly be a noteworthy issue in the upcoming election. The Conservatives are focused on how the cost of implementing pharmacare will be paid; they would prefer a program that fills in the gaps in drug coverage to protect the most vulnerable. The New Democratic Party claim they were in pharmacare territory first and that they can implement the plan faster. The Liberals are banking on voters believing they can do it just as well, if not better.
Critics of the plan warn of tax increases, reduced access to medicines and increased federal involvement in provincial jurisdictions.
The Canadian Partnership Against Cancer (the Partnership) supports the ideal behind Pharmacare for All, saying the plan is aligned with its own strategy. In its 2019 Canadian Strategy for Cancer Control released in June 2019, the Partnership called for reducing barriers that people face in getting the treatment they need, with the long-term vision that fewer Canadians will develop cancer, more people will survive the disease and those living with it will have a better quality of life.
“The pharmacare proposal would address barriers to access by eliminating the existing gap in public coverage of essential prescription drugs,” says Craig Earle, vice president of cancer control for the Partnership and a practising oncologist at Sunnybrook Hospital’s Odette Cancer Centre in Toronto. “By doing so, it would also improve the equity of access to cancer treatment for Canadians.”
Jenn Gordon, director of operations at the Ottawa-based, patient-led Canadian Breast Cancer Network (CBCN), says that access is a big issue for people with breast cancer, not only in terms of the inequities seen across Canada, but also when it comes to affordability and wait times.
“For some of our patients, the drugs and other treatments they need aren’t always accessible or affordable,” she says. “Even supportive medications like anti-nausea treatments or drugs that help stimulate the production of white blood cells are not always accessible. That’s when we see the GoFundMe pages pop up so people can afford what they need to maintain a decent quality of life.”
But not everyone sees the struggle in quite the same way. In an opinion piece written last September for a Toronto newspaper, the Financial Post, the CHPI’s Skinner wrote that it is a misperception that many Canadians cannot afford their prescription medicines. Rather, he argued, it is “formulary exclusions and long waits for new drugs to be covered under existing public drug plans (that) largely explain the medication affordability challenges.” He suggested that public drug plans should match the richer variety of medicines that private plans cover, and assimilate new drugs into their formularies more quickly.
Although the council’s report provided numerous details about the proposed pharmacare plan, it did not clarify how the program would address cancer drugs, except to suggest that the national formulary include all the cancer drugs now provided by hospitals.
“This is just one of so many unanswered questions,” the CBCN’s Gordon says. “We were surprised to not see many direct references to cancer in the report. It is critically important for patients to have access to drugs to manage their disease, to improve quality of life and to cure. What medications will make it onto the essential list? Will Canadian patients with cancer still have access to what they have access to now? Will standard of care stay the same? What about waiting times to access treatments?”
Access is on the radar of the Canadian Cancer Society (CCS) as well.
“It wasn’t really clear during the initial consultation if cancer drugs were going to be included,” says Shawn Chirrey, senior manager for policy at CCS. “What we are advocating for, during the federal election, is closing the gaps in coverage for take-home cancer drugs across Canada, so that Canadians have equitable access to lifesaving medications.”
What will make it into the national formulary is a sticking point, too, for the Ottawa-based Innovative Medicines Canada (IMC), an organization supporting the pharmaceutical industry.
“The impact (of pharmacare) on patients will really depend on what drugs will be covered under the proposed national formulary,” a spokesman for IMC says. “Will patients be able to access the same medications they currently rely on? Will they risk having their current treatments disrupted? Will Canadians with private insurance have to accept lower levels of coverage than their current drug plans?”
At this point, no one knows.
SYSF’s Binder adds that there needs to be more clarity about how pharmacare would be implemented.
“This was billed as an ‘implementation’ advisory council, but I could find nothing that looked like steps in an implementation plan,” she says. She suggests that the council’s first steps should have been to close the gaps in access that exist throughout the country, exempting the poor from deductibles, co-pays and dispensing fees, as well as implementation of the most comprehensive drug list (Quebec’s) for the near term.
The CanCertainty Coalition — a network of more than 35 cancer patient groups, charities and caregiver organizations working to ensure that every Canadian with cancer has access to the treatment they need no matter where they live — is in favour of the plan, but also stressed that patients with cancer can’t wait until 2022 for it to kick in.
Very soon, eager candidates will be knocking on doors, using pharmacare as a way to get votes, and when they do, Binder wants Canadians to be ready with their asks.
“Ask them what they mean by pharmacare,” she says. “Ask them how they believe their platform is going to help people right now, today — in a country that prides itself on its universal health-care system — to pay for the drugs they need to stay alive and healthy.”
For Gordon, the at-the-door conversation seems pretty simple.
“Ask them about commitment,” she says. “Are they committed to Canadian patients? They need to know that lives are at stake.”
Formosa has her own advice. She finished her treatment for melanoma and, in July, got the all-clear report from her doctor.
“Ask what happens if you are diagnosed with a serious illness like cancer,” she says. “Will your medications be covered? Will you have to worry about your life and paying for your drugs?”