Durhane Wong-Rieger
President & CEO, Canadian Organization for Rare Disorders
Canada’s National Pharmacare and Rare Disease Drug Strategy charts different paths to equitable access, with shared goals and unique challenges.
Could the National Strategy for Drugs for Rare Diseases (SDRD) be a counterpoint to National Pharmacare (Pharmacare) in charting a pathway for public access to advanced therapies, particularly, those with potentially high impact and value but reliant on real-world data to validate benefits and risks?
These paradoxical strategies toward universal equitable access to medicines share some commonalities. Both are implemented through bilateral federal/provincial/territorial agreements, and both designate a list of conditions and therapies that provinces should cover. Pharmacare Bill C-64, introduced in February 2024, prioritizes “appropriate use” and patient safety along with “optimizing health outcomes” and “health system sustainability.” The Bill allocates $1.5 billion over five years for universal, single payer coverage of primarily first-line diabetes medicines and a variety of contraceptives.
In contrast, the three-year $1.5 billion Rare Disease Drug Strategy, launched in March 2023, mandates coverage of 12 advanced therapeutics targeted for severe and untreated rare conditions. These are potentially life-altering but uncertainties in clinical trial results require monitoring for safety and benefits in real-world usage. The RDDS aims for improved “access to new and emerging drugs” as well as investment in infrastructure to “support enhanced access to existing drugs, early diagnosis, and screening” and, critically, facilitate access as early as possible, for better quality of life. Over time, genetically targeted therapies become more prevalent for common conditions, Pharmacare may evolve toward the RDDS and the RDDS may become more universal with no co-pays.
To learn more, please visit www.raredisorders.ca.
