Pangaea Express: All bilateral agreements signed for National Strategy for Rare Disease

All provinces and territories have now signed bilateral agreements with the federal government as per the National Strategy for Drugs for Rare Diseases to support enhanced access to existing drugs, early diagnosis, and screening for rare diseases. The Common List of Drugs contains 6 medicines, with some P/Ts including all 6, and others fewer:

• POTELIGEO (Mycosis fungoides or Sézary syndrome)
• OXLUMO (Primary hyperoxaluria type 1)
• EPKINLY (Relapsed or refractory diffuse large B-cell lymphoma)
• WELIREG (Von Hippel-Lindau disease)
• YESCARTA (Follicular lymphoma; 2nd line treatment of diffuse large B-cell lymphoma or high-grade large B-cell lymphoma)
• KOSELUGO (Neurofibromatosis type 1)

Quebec is the only province where there are no conditions with respect to the Common List of Drugs, allowing the province to support its current Policy for Rare Diseases and Action Plan on Rare Diseases 2023 – 2027.

The $1.4 billion promised by the federal government has been allocated for each P/T as the following: BC $194 million; Alberta $162 million; Saskatchewan $40 million, Manitoba $35 million, Ontario $535 million, Quebec $305 million, New Brunswick $32 million; Nova Scotia $39 million, PEI $10 million, NFLD $22 million; NWT $7.8 million; Nunavut $7.3 million; Yukon $8.5 million

*Whether the agreements were made in light of the upcoming election or not, it is welcome news to many Canadians in need of diagnosis and treatment for rare diseases. Though this funding will help many, it only scratches the surface of the need to help thousands of Canadians with many other rare diseases. *

For more information please contact Suzanne Solman at ssolman@pangaea-consultants.com or Marla Weingarten at mweingarten@pangaea-consultants.com