Health
Pharmacare won’t help Canadians with rare disorders
From the MacDonald Laurier Institute
By Nigel Rawson and John Adams
Canadians with rare disorders will be even worse off if NDP’s parliamentary blackmail works
Last month the federal NDP convention in Hamilton voted unanimously to force the Liberals to introduce a single-payer universal pharmacare program or see the current “confidence-and-supply” deal canceled. Will universal government-run pharmacare benefit Canadians with rare disorders? We fear not.
Canadians with such disorders are already disadvantaged compared with sufferers in other countries. Fewer specialized drugs are launched in Canada than in the United States and Europe. Those that are get approval for marketing about a year, on average, after they do there.
That’s not because Health Canada takes longer to review new medicines. The process takes about the same time in the three places. Rather, delayed approval is likely due to manufacturers submitting later to Health Canada because federal, provincial and territorial hostility towards the industry has made our biopharmaceutical market less attractive.
Approval doesn’t mean government drug plans will pay for a drug, however. Further government-created barriers impact all Canadians, but particularly those with rare disorders who want access to novel drugs for their unmet or poorly met health needs. As a consequence, what gets listed in government drug plans varies widely, leading to a postal code lottery.
In a set of articles published over the summer by the Macdonald-Laurier Institute, we discuss the several obstacles patients and their families face as they try to gain access to new or expensive innovative therapies. They include: the lack of federal incentives for developers to submit new medicines to Health Canada; health technology assessment that is neither accountable, independent nor transparent and makes recommendations about which drugs to cover in public drug plans to governments; and price negotiations between government drug plans and manufacturers.
Even when drug developers clear these government-created barriers, public drug plans are under no obligation to add the approved medicines to their benefit lists. Too often governments focus only on drug costs and ignore the broader benefits effective drugs can bring, not only to the health and well-being of patients and their families, but also to other parts of the health system, to the economy and to society at large. If a new drug reduces doctor or emergency visits or hospitalizations or helps a person get back to work, those benefits typically are ignored by our drug assessment system.
The federal government made matters worse over the past six years by planning to drastically reduce drug prices by regulatory order, not negotiation. This caused considerable uncertainty among developers, resulting in even fewer new drugs being submitted for marketing approval here than in the U.S. and EU.
Proponents plainly want a lowest-common-denominator government-run public plan that would crowd out private plans, which over two-thirds of Canadians currently rely on for drug access.
Despite the federal government committing $1.5 billion over three years to “increase access to, and affordability of, effective drugs for rare diseases to improve the health of patients across Canada,” its initiative is not comprehensive. So far, Canada has neither a government-endorsed national rare disorder strategy nor an Orphan Drug Act providing incentives to developers to launch orphan medicines in Canada. Most other developed countries have both.
Patients’ organizations have stepped in where governments have failed to act and proposed a Canadian strategy that would include incentives and funding to encourage developers to launch drugs in this country and cut through the barriers we have described to provide timely access to the many innovative treatments on the research horizon. For example, access to breakthrough drugs could be allowed as soon as Health Canada says they are safe and effective, even as other administrative boxes are checked and prices negotiated. Other countries use this approach.
Canadians afflicted with any of the 11,000 or so known rare disorders have significant unmet needs. Fewer than five per cent have any treatment beyond symptom relief or palliative care. The last thing these people need is for governments to ration innovative drugs even more than they already do or to force even deeper price cuts from drug developers in order to pay for universal pharmacare that covers only basic medicines.
Canadians with rare disorders almost certainly will be even worse off if the NDP’s parliamentary blackmail works.
Nigel Rawson is an affiliate scholar with the Canadian Health Policy Institute and a senior fellow with the Macdonald-Laurier Institute, as is John Adams, co-founder and CEO of Canadian PKU and Allied Disorders Inc.
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Aristotle Foundation
The Canadian Medical Association’s inexplicable stance on pediatric gender medicine
By Dr. J. Edward Les
The thalidomide saga is particularly instructive: Canada was the last developed country to pull thalidomide from its shelves — three months during which babies continued to be born in this country with absent or deformed limbs
Physicians have a duty to put forward the best possible evidence, not ideology, based treatments
Late last month, the Canadian Medical Association (CMA) announced that it, along with three Alberta doctors, had filed a constitutional challenge to Alberta’s Bill 26 “to protect the relationship between patients, their families and doctors when it comes to making treatment decisions.”
Bill 26, which became law last December, prohibits doctors in the province from prescribing puberty blockers and hormone therapies for those under 16; it also bans doctors from performing gender-reassignment surgeries on minors (those under 18).
The unprecedented CMA action follows its strongly worded response in February 2024 to Alberta’s (at the time) proposed legislation:
“The CMA is deeply concerned about any government proposal that restricts access to evidence-based medical care, including the Alberta government’s proposed restrictions on gender-affirming treatments for pediatric transgender patients.”
But here’s the problem with that statement, and with the CMA’s position: the evidence supporting the “gender affirmation” model of care — which propels minors onto puberty blockers, cross-gender hormones, and in some cases, surgery — is essentially non-existent. That’s why the United Kingdom’s Conservative government, in the aftermath of the exhaustive four-year-long Cass Review, which laid bare the lack of evidence for that model, and which shone a light on the deeply troubling potential for the model’s irreversible harm to youth, initiated a temporary ban on puberty blockers — a ban made permanent last December by the subsequent Labour government. And that’s why other European jurisdictions like Finland and Sweden, after reviews of gender affirming care practices in their countries, have similarly slammed the brakes on the administration of puberty blockers and cross-gender hormones to minors.
It’s not only the Europeans who have raised concerns. The alarm bells are ringing loudly within our own borders: earlier this year, a group at McMaster University, headed by none other than Dr. Gordon Guyatt, one of the founding gurus of the “evidence-based care” construct that rightfully underpins modern medical practice, issued a pair of exhaustive systematic reviews and meta analyses that cast grave doubts on the wisdom of prescribing these drugs to youth.
And yet, the CMA purports to be “deeply concerned about any government proposal that restricts access to evidence-based medical care,” which begs the obvious question: Where, exactly, is the evidence for the benefits of the “gender affirming” model of care? The answer is that it’s scant at best. Worse, the evidence that does exist, points, on balance, to infliction of harm, rather than provision of benefit.
CMA President Joss Reimer, in the group’s announcement of the organization’s legal action, said:
“Medicine is a calling. Doctors pursue it because they are compelled to care for and promote the well-being of patients. When a government bans specific treatments, it interferes with a doctor’s ability to empower patients to choose the best care possible.”
Indeed, we physicians have a sacred duty to pursue the well-being of our patients. But that means that we should be putting forward the best possible treatments based on actual evidence.
When Dr. Reimer states that a government that bans specific treatments is interfering with medical care, she displays a woeful ignorance of medical history. Because doctors don’t always get things right: look to the sad narratives of frontal lobotomies, the oxycontin crisis, thalidomide, to name a few.
The thalidomide saga is particularly instructive: it illustrates what happens when a government drags its heels on necessary action. Canada was the last developed country to pull thalidomide, given to pregnant women for morning sickness, from its shelves, three months after it had been banned everywhere else — three months during which babies continued to be born in this country with absent or deformed limbs, along with other severe anomalies. It’s a shameful chapter in our medical past, but it pales in comparison to the astonishing intransigence our medical leaders have displayed — and continue to display — on the youth gender care file.
A final note (prompted by thalidomide’s history), to speak to a significant quibble I have with Alberta’s Bill 26 legislation: as much as I admire Premier Danielle Smith’s courage in bringing it forward, the law contains a loophole allowing minors already on puberty blockers and cross-gender hormones to continue to take them. Imagine if, after it was removed from the shelves in 1962, government had allowed pregnant women already on the drug to continue to take thalidomide. Would that have made any sense? Of course not. And the same applies to puberty blockers and cross-gender hormones: they should be banned outright for all youth.
That argument is the kind our medical associations should be making — and would be making, if they weren’t so firmly in the grasp, seemingly, of ideologues who have abandoned evidence-based medical care for our youth.
J. Edward Les is a Calgary pediatrician, a senior fellow with the Aristotle Foundation for Public Policy, and co-author of “Teenagers, Children, and Gender Transition Policy: A Comparison of Transgender Medical Policy for Minors in Canada, the United States, and Europe.”
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