Government of Canada signs bilateral agreement with Nova Scotia to improve access to drugs for rare diseases
Agreement will improve access to, and affordability of, drugs for rare diseases
HALIFAX, NS, March 20, 2025 /CNW/ - In Canada, one 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 Kamal Khera, Canada's Minister of Health, and the Honourable Michelle Thompson, Nova Scotia's Minister of Health and Wellness, announced a bilateral agreement investing over $39 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 six 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;
- Epkinly for relapsed or refractory diffuse large B-cell lymphoma;
- Welireg for the treatment of treatment of von Hippel-Lindau (VHL) disease;
- Yescarta for the treatment of follicular lymphoma, large B-cell lymphoma (LBCL), diffuse large B-cell lymphoma (DLBCL), and high-grade B-cell lymphoma (HGBL); and,
- Koselugo, for the treatment of neurofibromatosis type 1.
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, Nova Scotia 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.
Quotes
"This agreement is another step toward building a stronger public health system for the people of Nova Scotia. By investing in drugs for rare diseases, this agreement will improve affordability and access to medications, early diagnosis, and screening, so that people in Nova Scotia with rare diseases have the best health outcomes possible."
The Honourable Kamal Khera
Minister of Health
"This significant investment of over $39 million, through the Government of Canada's bilateral agreement with Nova Scotia, represents a crucial step forward in ensuring Canadians with rare diseases have access to medications they need. We are committed to building a healthcare system where cost and location are not barriers to essential treatment, and this agreement delivers on that promise by providing access to vital drugs and improving early diagnosis and screening. This is about ensuring dignity and quality of life for all Canadians facing the challenges of rare diseases."
The Honourable Kody Blois
Minister of Agriculture and Agri-Food and Rural Economic Development
"Nova Scotia is pleased to partner with the federal government to better support Nova Scotians living with rare diseases. This agreement helps support access to medications for rare diseases, improvements to screening and diagnostics, and work to strengthen data and evidence for decision making."
The Honourable Michelle Thompson
Nova Scotia's Minister of Health and Wellness
Quick Facts
- 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.
Related Products
- Drugs for Rare Diseases – Nova Scotia Agreement - Canada.ca
- National Strategy for Drugs for Rare Diseases Initiative, Canada-Nova Scotia Funding Agreement - Canada.ca
Associated Links
SOURCE Health Canada (HC)