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e-4823 (Health)
E-petition
Initiated by Danielle Weil from Brantford, Ontario
Original language of petition: English
Petition to the Government of Canada
Whereas:
- Cystic fibrosis (CF) is the most common fatal genetic disease affecting 4,338 Canadian children and young adults. There is no cure. Of the Canadians with CF who died in the past five years, half were under the age of 38.7 years;
- Trikafta is a life-changing medicine that treats the basic defect of CF, not just symptoms. Trikafta can treat almost 95% of Canadians with CF, but not all can access it. Approximately 4-5% of Canada’s CF population have rare mutations that are known to or may respond to Trikafta, but they can’t access it;
- Trikafta is funded by all public drug programs for those aged 6 and older with at least one copy of the most common mutation that causes CF. Canadians with rare mutations still have no access; and
- A broader regulatory approach is needed to support implementation of the National Strategy for Drugs for Rare Diseases, and cystic fibrosis is an example of this need. There are hundreds of disease-causing mutations, some with only a handful of patients worldwide. Other countries are using in vitro data to provide access to those with rare and ultra-rare mutations while approximately 200 Canadians with CF are being left behind.
We, the undersigned, citizens of Canada, call upon the Government of Canada to:
1. Improve access to rare disease medications by empowering Health Canada to expedite use of patient and laboratory in vitro data to expand access to drugs for rare diseases/mutations where clinical trials are not feasible; and
2. Develop a regulatory model that permits bulk approvals of gene mutations that can respond to precision medicines like Trikafta.
- Open for signature
- February 29, 2024, at 10:44 a.m. (EDT)
- Closed for signature
- March 30, 2024, at 10:44 a.m. (EDT)
