December 5, 2024 | Edmonton, Alberta | Health Canada

In Canada, 1 in 12 people live with a rare disease, and for most people suffering from these diseases, the cost of treatment is unaffordable. Canadians deserve a health care system that provides timely access to quality health services and medications, including effective drugs for rare diseases, regardless of where they live or their ability to pay.

Today, the Honourable Mark Holland, Canada’s Minister of Health, and the Honourable Adriana LaGrange, Alberta’s Minister of Health, announced a bilateral agreement investing over $162 million to improve access to selected new drugs for rare diseases, and to support enhanced access to existing drugs, early diagnosis, and screening.

The first step in this bilateral agreement will be to deliver funding to support the province for the following three drugs under the National Strategy for Drugs for Rare Diseases:

• Poteligeo, for the treatment of mycosis fungoides or Sézary syndrome;
• Oxlumo, for the treatment of hyperoxaluria type 1; and,
• Epkinly for relapsed or refractory diffuse large B-cell lymphoma.

The names of other drugs on the common list will be published online on a drug-by-drug basis following the conclusion of the pan-Canadian Pharmaceutical Alliance price negotiations for each drug. In addition, Alberta is committing through this agreement to work with Canada and other provinces and territories on developing and implementing a plan for improving screening and diagnostics for rare diseases.

The Government of Canada remains committed to working with provinces and territories to improve health care for all Canadians, including access to affordable prescription medications and better health outcomes for everyone.