British Columbia – The Governments of Canada and British Columbia (BC) signed the National Strategy for Drugs for Rare Diseases (DRD) agreement to invest a total amount of $194 million over three years to improve access to new drugs for rare diseases for its residents and to support enhanced access to existing drugs, early diagnosis, and screening for rare diseases.
In March 2023, the Government of Canada announced an investment of up to $1.5 billion over three years to support the National Strategy for Drugs for Rare Diseases (the Strategy), including up to $1.4 billion for bilateral agreements with provinces and territories (PTs) to help patients with rare diseases have access to treatments as early as possible, for better quality of life.
These three-year agreements are part of the first phase of the Strategy, which is focused on building, testing, and learning in collaboration with governments and health system partners. Lessons learned from the initial three-year bilateral funding agreements with PTs as well as the Strategy-funded projects by pan-Canadian partners (e.g., drug pipeline work) will be incorporated into recommendations for the funding and design of future phases of the Strategy, for which the Government of Canada has confirmed ongoing funding of up to $500 million per year to help Canadians with rare diseases access the drugs they need.
In the lead-up to this first bilateral agreement, PTs, except Quebec, worked together to develop a small common list of new drugs to be funded and cost-shared across the country, and began discussions on a collaborative approach to improve screening and diagnostics for rare diseases.
Common List
The common list of new drugs is a result of over a year of development with PTs to ensure that the National Strategy delivers the most benefits possible to patients with rare diseases. Recognizing the unique challenges associated with decision making about drugs to treat rare diseases, the common list is designed to further the development, collection, evaluation, and use of real-world data and evidence in decision making about the listing and reimbursement of rare disease drugs within Canada’s existing pharmaceutical management system.
Through the signing of bilateral agreements, PTs, such as BC, are committing to work with Canada and other PTs who may sign bilateral agreements to design and implement evidence collection projects. Complementary to related projects now underway through Canada’s Drug Agency and the Canadian Institute of Health Information, that will inform the future collection and use of real-world data and evidence for decision making about other new rare disease drugs.
As the pan-Canadian Pharmaceutical Alliance concludes price negotiations for each drug on the common list, they will be published online here on a drug by drug basis. PTs who choose to sign bilateral agreements may elect to make these drugs available to their residents.