Ottawa, April 1, 2025 – Quebec signed a bilateral agreement under the federal government’s National Strategy for Drugs for Rare Diseases, making it the final jurisdiction to do so. With all provinces and territories now on board, implementation efforts can move forward to improve access to rare disease treatments across the country.
Under the federal strategy announced in March 2023, up to $1.5 billion over three years has been committed to support access to new and emerging drugs, enhance early diagnosis and screening, and strengthen care pathways for rare disease patients.
While the specific terms vary by province and territory, most jurisdictions have agreed to allocate:
- 50% of the funds toward drugs on a common list.
- 40% toward broader coverage for rare disease drugs not on the list; and
- 10% for diagnostics and screening programs.
Quebec’s agreement takes a slightly different approach, recognizing the province’s existing rare disease strategy. Instead of adopting the federal common list, Quebec will be using funding to support its Action Plan for Rare Diseases and reimburse costs under its public RAMQ program.
While these agreements are an important first step, more work needs to be done to ensure a coordinated approach to rare disease research, diagnosis and treatment for rare disease patients and their families.
As a next step, we encourage the federal government to work with provinces, patients, researchers, and industry to strengthen the national strategy. Key priorities should include a standard definition of rare disease aligned with international norms, a dedicated review and access pathway that incorporates real-world evidence and modernized value assessments, centres of expertise to support research and faster diagnoses, and greater investment in research and clinical trials to improve patient access to innovative treatments
Currently, only 60 per cent of rare disease treatments reach the Canadian market, and most arrive years after they are available in the U.S. or Europe. This delay affects not only patients and families living with rare conditions but also places added pressure on Canada’s health systems. Ensuring that the bilateral agreements lead to real-world improvements in access will be critical.
Innovative Medicines Canada (IMC) remains committed to working with all levels of government to ensure timely implementation of these agreements and improve patient access to life-saving treatments.
About Innovative Medicines Canada
Innovative Medicines Canada (IMC) is the national association representing Canada’s innovative pharmaceutical industry. The industry proudly supports over 100,000 high-value jobs, contributes a total of $16 billion to the economy, sponsors the majority of clinical trials in Canada, and invests close to $3 billion in research and development each year. IMC advocates for policies that enable the discovery, development, and delivery of innovative medicines and vaccines to improve the lives of all Canadians. The association and its members are committed to being solutions-oriented partners in Canada’s healthcare system and have contributed over $30 million towards applied health systems research through the Health Research Foundation (HRF). Guided by the Code of Ethical Practices, all members work with governments, private payers, healthcare professionals, and stakeholders in a highly ethical manner.
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Media Relations
E-mail: media@imc-mnc.ca
