Agreement will improve access to, and affordability of, drugs for rare diseases
IQALUIT, NU, March 13, 2025 /CNW/ - 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 John Main, Nunavut's Minister of Health, announced a bilateral agreement investing over $7.3 million over three years 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 territory for the following four drugs under the National Strategy for Drugs for Rare Diseases:
- Poteligeo, for the treatment of mycosis fungoides or Sézary syndrome;
- Epkinly, for the treatment of relapsed or refractory diffuse large B-cell lymphoma;
- Welireg for the treatment of treatment of von Hippel-Lindau (VHL) disease; and,
- 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).
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, Nunavut 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.
Quotes
"Reaching this agreement is another step in our collaborative efforts to build a stronger public health system for Nunavut. Investing in drugs for rare diseases will improve affordability and access to medications, early diagnosis, and screening, so that people in the territory with rare diseases have the best health outcomes possible."
The Honourable Mark Holland
Minister of Health
"We are committed to increasing health equity in the north and the signing of this bilateral agreement reflects this commitment. Through this additional funding, Nunavummiut will have greater access to new and emerging high-cost rare drugs. It will support our efforts to strengthen screening for rare diseases, and the travel that is often required for Nunavummiut who need specialized treatment and care. We welcome continued opportunities to work collaboratively with the Government of Canada to build a more equitable health system in Nunavut."
John Main
Nunavut's Minister of Health
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
- Backgrounder: Drugs for Rare Diseases – Nunavut Agreement
- Nunavut's Drugs for Rare Diseases Agreement
Associated Links
SOURCE Health Canada (HC)
Contacts: Matthew Kronberg, Press Secretary, Office of the Honourable Mark Holland, Minister of Health, 343-552-5654; Media Relations, Health Canada and Public Health Agency of Canada, 613-957-2983, [email protected]; Public Inquiries: 613-957-2991, 1-866-225-0709
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