This article is the sixth part of an 8-part series from the authors. The series, Waiting for new drugs for rare disorders in Canada, is an in-depth look at the disadvantages faced by Canadians with rare disorders in accessing needed, innovative drugs.
By Nigel Rawson and John Adams, August 16, 2023
In previous articles in our series, we have demonstrated the various, often lengthy, delays in getting drugs for rare disorders reimbursed by government drug plans due to the many steps in the overall process and a lack of commitment to put patients first. In this article, we consider what many Canadians think will offer a solution to the variability in access across Canada – this is national pharmacare.
Opinion polls regularly show that most Canadians are supportive of the idea of national pharmacare. Key questions, however, are what does “national pharmacare” mean to Canadians, how many drugs would be covered, how would a pan-Canadian system be implemented, and how much would it cost?
Some assume national pharmacare implies access to all medicines approved by Health Canada for all Canadians who need them at modest or no direct cost to individual patients, so that there is no need for private drug insurance. The replacement of employment-based health benefits for drugs seems to be fantasyland. The health system could never afford it and the two-thirds of Canadians with these plans are unlikely to stand for it.
Approaches to national pharmacare have been studied and costs estimated by the Parliamentary Budget Officer, the Canadian Health Policy Institute, the federal government’s Advisory Council on the Implementation of National Pharmacare, and the tax consulting company RSM Canada for the Canadian Taxpayers Federation. Cost estimates range from $19 to $52 billion. Political parties have offered lower amounts that would be totally inadequate. Without sufficient funding, national pharmacare would turn into just another way to ration and delay access to new drugs.
A comprehensive nationwide scheme would also be unlikely to work because it would mean all government drug plans changing their data systems and payment structures to a pan-Canadian program. Obtaining agreement for this would be extremely difficult, if not impossible, as the COVID-19 pandemic demonstrated.
Another interpretation of national pharmacare is coverage for those Canadians not presently covered by government or private drug plans. The majority of this small and shrinking number of Canadians live in Ontario and Newfoundland and Labrador and are generally lower-income working individuals. Some academics envisage a plan that would cover only what are labelled essential drugs, with “essential” having various interpretations but frequently meaning older and cheaper medicines for common illnesses. Facilitating access to necessary medicines for lower-income working Canadians is a worthy objective, but achieving it doesn’t require a government national pharmacare. The goal could be achieved more effectively and affordably using a targeted approach, such as exempting lower-income patients from copayments and deductibles in existing government drug plans.
Innovative medicines that significantly improve the lives of people suffering once untreatable life-threatening disorders should also be considered essential. If the quality or existence of your life is at risk, you may be forgiven for thinking that the medicine you need is essential. Which drugs are deemed essential should not be decided behind closed doors by government officials.
Calls for national pharmacare from certain academics, journalists and politicians don’t mention rare disorder drugs, which few Canadians can afford no matter what their income is. In the 2019 federal budget, the Liberals said they would introduce a rare disorder strategy and, in their 2021 election platform, promised $500 million per year to fund drugs for rare disorders. A rare disorder strategy will be discussed in a later article.
Some politicians, academics, labour unions and others have advocated for regulating drastically lower prices for new medicines to allow for the cost of national pharmacare. As we described in the previous article, forcing major price cuts by heavy-handed government rules would result in developers launching their new drugs in other countries before Canada or not bringing them to Canada at all.
Even the threat of such price cuts has led to fewer drugs being submitted to Health Canada. Between 2006 and 2014, 79 percent of new drugs for rare disorders submitted for regulatory approval in the United States or the European Union were also submitted for approval in Canada but, by 2020, the rate fell to just 39 percent. In other words, less than 40 percent of new rare disorder drugs are coming to Canadians.
Any national pharmacare program must not only ensure that lower-income Canadians can afford the medicines they need for common illnesses but must also ensure that all Canadians who need costly rare disorder drugs can obtain access to them without unnecessary cost or restrictive access criteria. This should be the goal of national pharmacare. No patient should be left behind.
Nevertheless, a fully comprehensive pharmacare program seems improbable in today’s Canada given the politics of federal-provincial relations. A fill-the-gaps approach for both the working poor and those suffering from treatable rare disorders could offer a better alternative for Canadians. Patients will continue to suffer and die if the status quo continues.
Nigel Rawson is a Senior Fellow with the Macdonald-Laurier Institute and an Affiliate Scholar with the Canadian Health Policy Institute. John Adams is cofounder and CEO of Canadian PKU and Allied Disorders Inc., a Senior Fellow with the Macdonald-Laurier Institute and volunteer board chair of Best Medicines Coalition.
The views expressed are the authors’ own and do not necessarily represent those of organizations with which they collaborate.