Pangaea Express: Update on National Strategy for Drugs for Rare Diseases Bilateral Agreements
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Today, Ontario signed the National Strategy for Drugs for Rare Diseases (DRD) agreement with the federal government for $535 million in funding over three years to improve access to new drugs for rare diseases for Ontario residents and to support enhanced access to existing drugs, early diagnosis, and screening for rare diseases.
The Rare Disease Strategy Common List of Drugs has 5 drugs now listed on it: 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).
Six provinces have now signed bilateral agreements with the federal government regarding the $1.4 billion promised to provinces and territories (PTs) in the Federal Rare Disease Strategy. Here is a summary of the funding and specific drugs to be funded for each province:
- Funding: $194 million over 3 years will be funding
- Drugs: POTELIGEO (20 people); OXLUMO (5 - 15 people); Since July 23 agreement, BC has added the following drugs to the bilateral agreement: EPKINLY; WELIREG; YESCARTA
- Drugs for Rare Diseases – Newfoundland and Labrador Agreement November 15, 2024
- Funding: $22 million over 3 years
- Drugs: PORTELIGEO (2 - 3 people): OXLUMO (1 - 2 people)
- Drugs for Rare Diseases – Alberta Agreement December 5, 2024
- Funding: $162 million over three years
- Drugs: POTELIGEO (17 - 27 people); OXLUMO (5 - 15 people); EPKINLY (estimate 166 people)
- Drugs for Rare Diseases - Saskatchewan Agreement January 10, 2025
- Funding: more than $40 million over 3 years
- Drugs: POTELIGEO (5 - 7 people), OXLUMO (2 - 4 people) and EPKINLY (estimate for 42 people
- Drugs for Rare Diseases – New Brunswick Agreement January 15, 2025
- Funding: $32 million
- Drugs: POTELIGEO, OXLUMO, WELIREG, EPKINLY (80 – 100 people for all drugs listed)~~
- Drugs for Rare Diseases – Ontario Agreement January 24, 2025
- Funding: $535 million over 3 years
- Drugs: POTELIGEO (56-90 people), OXLUMO (16 - 48 people), WELIREG (302 - 1440 people), YESCARTA (547 - 613 people) and EPKINLY (estimate for 547 people)
In addition to improving access to new DRDs on the common list, bilateral agreements aim to improve screening and diagnostics as well as access to other existing DRDs.
These bilateral agreements are welcome news for this National Strategy for Drugs for Rare Diseases that was rolled out back in 2023. So far, $985 million has been promised to help patients receive treatment for the above rare diseases.
For more information, please contact Suzanne Solman at ssolman@pangaea-consultants.com or Marla Weingarten at mweingarten@pangaea-consultants.com