On June 7, Maclean’s hosts “Health Care in Canada: Time to Rebuild Medicare,” a town hall discussion at the National Gallery of Canada, in Ottawa. The public forum is held in conjunction with the Canadian Medical Association and broadcast by CPAC.
Garrett Shakespeare is 22. He lives in North Vancouver where he supports himself as a lifeguard and swimming instructor at the local recreation centre. Many nights you’ll find him working as “DJ G-Ratt,” spinning electronic music and mixes at Vancouver nightclubs. Shakespeare exists in a world of chronic pain caused by an exceptionally rare and fatal blood disease, paroxysmal nocturnal haemoglobinuria (PNH), in which his red blood cells are attacked by the body’s immune system. There are, perhaps, 80 or 90 people in Canada similarly afflicted. Without treatment, about one-third of patients die within five years of diagnosis, and half die within 10 years, says the Canadian Association of PNH Patients. Shakespeare was diagnosed 11 years ago. And he is just one example of the many ways in which Canada’s health care system is neither universal, nor equitable, as far as our drug policy is concerned.
What is the life of a guy like Garrett Shakespeare worth? Should he be allowed to live if it costs $10,000 a year? What if $50,000 is the price of his life? How about $500,000? Is Garrett Shakespeare’s life worth $500,000 a year?
Not in British Columbia it isn’t. The provincial Ministry of Health Services concluded that at $500,000—the annual cost of Soliris, the one drug almost certain to restore his health, if taken for the rest of his life—treatment is “not cost-effective.” He is, in other words, expendable. “It’s pretty hard to hear that,” says Shakespeare, who has the misfortune to need a drug that Forbes magazine describes as the most expensive in the world. (Alexion Pharmaceuticals, creators of Soliris, said the cost is justified by the expense of developing a drug for an extremely small market.)
If Shakespeare lived in Quebec or Ontario, he might receive Soliris on compassionate grounds, as have some PHN sufferers, though the policy is inconsistently applied (in 30 other countries, the drug would be paid for). His plight shows the toll too many Canadians pay for the political failure to draft a national, universal pharmacare policy, or at least a national, catastrophic drug insurance plan for those who must choose between their health and financial ruin. Canadian drug policy is a mishmash of private employee-employer-paid health plans, as well as public drug coverage that varies by province based on differing criteria of age, income, drug type, and degree of compassionate whim.
Paying for cancer drugs is another, more typical concern. Three-quarters of newer cancer drugs cost more than $20,000 per course of treatment if they’re taken at home, where they’re not covered by medicare. Provinces do have differing catastrophic drug plans that pay a portion of those costs (if they’ve approved the drugs), but the deductibles run into many thousands of dollars. A poll by the Canadian Cancer Society last September found 74 per cent of Canadians support a publicly funded catastrophic insurance plan to pay the full cost of cancer drugs. Eight in 10 favour a federal program to eliminate provincial differences in their cost and availability. “The lack of a national approach to drug coverage is resulting in a disturbing shift from universal health care to health care by postal code and pocketbook,” said the society’s Aaron Levo.
The result, for a country that prides itself on a public, universal health care system, is a drug policy that is neither. Growing drug costs account for the second highest share, after hospitals, of scarce health care resources. An estimated $26 billion was spent on prescription drugs in Canada in 2010, says a report last month by the Canadian Institute for Health Information. Nationally, the average annual increase in public and private drug spending was almost nine per cent between 2000 and 2005. While that slowed to an average 4.8 per cent since 2009, it still outstrips inflation.
Yet, just 60 to 70 per cent of Canadians are covered by health insurance. The unemployed, and those whose jobs don’t include private drug plans, shoulder much of the cost themselves. In New Brunswick, for example, just 33 per cent of drugs used are paid for from the public purse, the lowest in the country. And some three to four million Canadians a year do without drugs they were prescribed because of the cost. It is little different than the much derided U.S. system, says Marc-André Gagnon, an assistant professor at Carleton University’s School of Public Policy and the author of a recent study, “The Economic Case for Universal Pharmacare.” Canadians are almost as dependent as Americans on inefficient private drug plans, and the premiums they and employers pay are almost as high. “We get the same results as the United States,” says Gagnon, “a lot of waste, a lot of inefficiency and a lot of people who aren’t covered.” (Meanwhile, most European countries, and Australia and New Zealand, have models that provide universal pharmacare, and more success at containing drug costs.)
A further source of pain is the fact that Canadian drug prices are among the highest in the world. For some 300 popular generic drugs, they were double the cost of similar U.S. generics, and five times that of New Zealand’s, notes a study released in May by the University of British Columbia Centre for Health Services and Policy Research. Ontario has taken a lead since 2006 in shaving the price it pays for generic drugs. By next year it will pay only 25 per cent of the cost of brand-name equivalents. There would be annual savings of $1.3 billion if all provinces similarly squeezed their suppliers. There’s even more room to cut, says Michael Law, one of the report’s authors—enough savings to pay for all cancer drugs used in Canada, or to underwrite a catastrophic drug plan, the authors conclude.
In 2004, the premiers lobbied to include a national pharmacare plan in the health accord that set health funding levels for the next 10 years, but it was traded away in closed-door negotiations with the federal government. The Canadian Medical Association (CMA) and the Canadian Nurses Association are among those urging that a national pharmacare program be included when federal and provincial first ministers negotiate the funding for a new health accord in 2014. As an editorial in the CMA Journal said this spring: “We cannot pretend to have universal public health care or expect the benefits inherent in such a system while it excludes the medications necessary to prevent and treat illnesses.”
Gagnon’s study says universal pharmacare would actually save billions, especially if the federal government dropped its policy of keeping drug prices high to promote pharmaceutical investment and jobs. Stripping away those incentives, coupled with the efficiencies of a universal drug plan, could create a fairer system and save almost $11 billion.
Garrett Shakespeare downs powerful steroids every morning to ease the pain. They’re eroding his bone density and causing other troublesome side effects. He goes for blood tests most weeks, makes regular visits to a blood specialist, and trips to hospital for blood transfusions or saline IVs laced with morphine to dull the pain.
Last month, he buttonholed B.C. Premier Christy Clark, and in a three-minute meeting handed her a letter making his case again for Soliris treatment. “She said she’ll get me an answer soon,” he says. In the meantime, he waits and worries and wonders why a man should have to beg for his life in a wealthy country—a world leader, he was led to believe, in universal health care.
The Ottawa forum will be moderated by Maclean’s Ken MacQueen, with opening remarks by Dr. Jeff Turnbull, CMA President. The panel includes Nadine Henningsen, Executive Director of the Canadian Home Care Association; Irwin Elman, Ontario’s Advocate for Children and Youth; Scott Dudgeon of the Neurological Health Charities of Canada; and John Geddes, Maclean’s Ottawa Bureau Chief.