This article originally appeared in the Financial Post.
By Nigel Rawson and John Adams, January 8, 2024
The federal government is committing tens of billions of tax dollars to two new programs — dental care and pharmacare. In our view, a persuasive argument can be made that the money would do more good if more of it were directed to Canadians with rare disorders.
A good rule-of-thumb in Ottawa is that budget estimates always underestimate what things will eventually cost. That said, the government’s current plan is to spend $13 billion over five years and $4.4 billion every year after that for a national dental care plan for low- and middle-income Canadians who lack private insurance. It also plans to implement basic pharmacare for Canadians who don’t have private or public drug coverage. Although the new program will only provide coverage for so-called “essential drugs,” such as anti-hypertensives, antibiotics and pain relievers, which generally cost less than a dollar a pill, the government’s own advisory council estimated that pharmacare would cost $15 billion annually.
The Liberals are establishing both programs in order to keep the parliamentary support of the NDP and stay in power in the short term. The two parties apparently believe widely targeted programs will produce the most policy and political mileage for them.
Maybe so, but in terms of policy results at least, $20 billion a year, or some part of it, could bring life-changing, even life-saving benefits to the three million Canadians who currently suffer from rare health disorders. Getting a diagnosis can take years and require expensive travel to major health centres. And of course diagnosis is only the first step in effective care. Although only a tiny fraction of 11,000 known rare diseases are treatable beyond symptoms and palliative care, drugs that have been developed in recent years or are in the pipeline do allow a growing proportion of patients with rare disorders to be helped.
But these drugs are often very expensive, costing hundreds of thousands of dollars per patient per year — even millions for some life-changing, one-course-of-treatment drugs. Such costs are beyond the means of all but the wealthiest among us. Anyone lacking access to the platinum-level private drug insurance that federal politicians and officials enjoy must look to public drug plans to pay for these new drugs.
But governments have created obstacles developers have to clear to get new medicines listed in these public drug plans. They include: an absence of incentives to submit new drugs to Health Canada; health-technology assessments that take a narrow view of benefit, lack accountability and transparency and usually miss deadlines; and slow price negotiations between governments and companies.
Even when developers do make it over these barriers, government gatekeepers slow-walk drugs for rare disorders when putting them on provincial formularies. Process comes before patients. Too often, patients and their doctors wait while every “t” is crossed and “I” dotted at each and every gatekeeping step.
As a result, developers usually bring new medicines to Canada only after introducing them in the United States and Europe. Three of 10 “orphan drugs” don’t make it to Canada at all. Those that are launched face all-too-common delays — even medicines to treat diseases where patients don’t have time to wait, such as cancer, ALS, spinal muscular atrophy and sickle cell disease. So-called universal pharmacare that covers only inexpensive “essential” drugs will be of no help to Canadians with these diseases.
The Liberals’ plan for dealing with the high cost of drugs for rare disorders? Regulate prices down. More radical aspects of their price-control plans have been halted by the courts but they are bound to try other means to reduce the prices of innovative medicines. The likely result is that developers will bring new drugs to Canada last, if at all.
New Zealand provides a cautionary tale. As a result of its severe pricing restrictions, only seven per cent of 460 public-funded medicines introduced in OECD countries in the last 10 years are accessible through its public drug plan. Countries like Estonia, Hungary, Poland and Turkey are ahead of New Zealand in public access to new medicines.
To be sure, the federal government is providing $1.5 billion over three years to increase access to and affordability of effective drugs for rare disorders. Unfortunately, that’s not nearly enough. Cystic fibrosis, the rare genetic disease that leads to a loss of lung function causing much suffering and premature death, affects about 4,000 Canadians. A drug called Trikafta, which has a list price of around $300,000 per year, would help almost all Canadians suffering from it. Even if Trikafta’s price were discounted by 30 per cent for government drug plans, the $500 million Ottawa’s new initiative provides annually would pay for only about 60 per cent of cystic fibrosis sufferers — leaving nothing for other patients and drugs.
These new funds for access to drugs for rare disorders are a step in the right direction. But in a $500-billion-a-year federal budget, $500 million a year is a rounding error. The lives of Canadians with these illnesses should have the same value as everyone else’s, even if their drugs are expensive. Budgetary decisions are tough, yes, but rarely as tough as what faces Canadians with rare disorders, who should not be left to suffer and die because of political minuets in a minority parliament.
Nigel Rawson and John Adams are senior fellows at the Macdonald-Laurier Institute. Adams is also co-founder and CEO of Canadian PKU and Allied Disorders Inc. and volunteer board chair of Best Medicines Coalition.