On March 22, 2023, the Minister of Health announced the first-ever National Strategy for Drugs for Rare Diseases (additional background here). This strategy includes $1.5 billion invested to “increase access to, and affordability of, effective drugs for rare diseases to improve the health of patients across Canada, including children.” Funding will be directed as follows:
- Up to $1.4 billion to provinces and territories through bilateral agreements (to be negotiated) to improve and enhance access to drugs, early diagnosis and screening for rare diseases. To begin, the Government of Canada, provinces, and territories will determine a list of new drugs to be cost-shared and covered in a consistent way.
- $33 million over 3 years to Indigenous Services Canada's Non-Insured Health Benefits Program to support eligible First Nations and Inuit patients with rare diseases.
- $20 million over 3 years to the Canadian Agency for Drugs and Technologies in Health (CADTH) and the Canadian Institute for Health Information (CIHI) to improve evidence collection and use.
- $32 million over 5 years to the Canadian Institutes of Health Research (CIHR) to advance research in rare diseases.
- $16 million over 3 years to establish national governance structures.