Writing in the March edition of DIA’s Global Forum magazine, Judith Glennie examines the findings of Health Canada’s consultation with Canadians on what a national strategy for high-cost rare disease drugs could look like.


On January 27, 2021, Health Canada launched a consultation on the development of a National Strategy for High-Cost Drugs for Rare Diseases. The consultations (open until March 26, 2021) are intended to engage Canadians and invite them to share their ideas and views on what a national strategy could look like. The foundation of the consultations is a discussion paper describing key considerations and questions for developing a national strategy for high-cost drugs for rare diseases. Feedback is being solicited through an online questionnaire, written submissions, and/or participation in virtual public town halls.



The February and June 2019 installments of Global Forum provided an overview of the history regarding Canadian policy developments related to drugs for rare diseases (DRDs). After years of discussion and pressure by provincial/territorial governments and patient advocacy groups, Canada’s federal government proposed the development of a Rare Disease Strategy in its March 2019 budget.

The budget contained little information as to the scope of the strategy, but the stated goal was to ensure that patients with rare diseases have access to effective, medically necessary therapies at an affordable cost. The federal government noted that it was looking to develop an approach to gather and evaluate evidence for DRDs, to improve the consistency of decision-making/access to these products across Canada, and to develop strategies for negotiating with manufacturers. They proposed an investment of up to $1 billion over two years (starting in 2022-23), with up to $500 million ongoing per year.

After the initial announcement, there were no further comments made regarding the strategy for well over a year. Then, in September 2020, the federal government reaffirmed its commitment to the strategy as part of the 2020 Fall Economic Statement and the Speech from the Throne. While it was heartening to see that the strategy was still in play, it was not until January 2021 that the potential scope of the strategy was revealed. This has led to the current consultation process.


Federal Consultations

Components of the Discussion Paper

The discussion paper is directed towards a wide range of stakeholders and, as such, provides a great deal of background information regarding what a rare disease is, the challenges of developing and funding DRDs, how DRDs are accessed and funding decisions made, and the rationale for a national strategy for high-cost drugs for rare diseases.

The paper outlines three key issues in creating a national strategy, options for addressing these issues, and then a series of questions related to these options. A general concluding question is also posed for stakeholders to address:

  • Do you have other ideas that might help increase access and lower costs for drugs for rare diseases?


To read the full article, visit the DIA Global Forum’s website here