Agreement will improve access to, and affordability of, drugs for rare diseases
January 24, 2025 | Ottawa, ON | Health Canada
In Canada, 1 in 12 people live with a rare disease, and for most people affected, 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 Sylvia Jones, Ontario’s Minister of Health, announced a bilateral agreement investing over $535 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 the province to provide access to five drugs under the National Strategy for Rare Diseases:
The names of other drugs on the common list will be published online here on a drug-by-drug basis following the conclusion of the pan-Canadian Pharmaceutical Alliance price negotiations for each drug. In addition, Ontario 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 to achieving better health outcomes for everyone.
“Reaching these agreements is another step in our collaborative efforts to build a stronger public health system for Ontarians. By investing in drugs for rare diseases, this agreement will improve affordability and access to medications, early diagnosis, and screening, so that people in Ontario with rare diseases have the best health outcomes possible.”
The Honourable Mark Holland
Minister of Health
“Ontario is making it easier and faster for people of all ages, living with rare diseases to connect to the treatment they need, when and where they need it. As Ontario continues to lead the country in funding treatment and screening for rare diseases, this agreement will complement the bold, innovative action our government has taken to connect people with rare diseases and their families to even more innovative, lifechanging treatment options, for generations to come.”
Sylvia Jones
Ontario’s Deputy Premier and Minister of Health
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, including up to $1.4 billion for bilateral agreements with provinces and territories to help patients with rare diseases have access to treatments as early as possible, for better quality of life.
Innovative treatments for rare diseases can cost anywhere from $100,000 to more than $4 million per year.
Ontario’s Drugs for Rare Diseases Agreement has been posted online.
