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Approximately 30 Members of Parliament and Senators from all parties today met with cystic fibrosis advocacy groups to discuss how to get Canadians access to the breakthrough cystic fibrosis (CF) drug Trikafta in an historic all-party meeting that was hosted by Cystic Fibrosis Canada.
At the meeting, Cystic Fibrosis Canada asked that attendees commit to an all-party approach for access to Trikafta. There was strong support among those present to move forward with a shared access strategy.
Access to the drug in Canada has been delayed, with the manufacturer citing proposed changes to the Patented Medicine Prices Review Board (PMPRB) guidelines.The guidelines, which were released by the PMPRB today, are just the first hurdle in Canada’s drug review and reimbursement system that innovative medicines like Trikafta must overcome to finally reach the Canadians who need them.
“This meeting is an emergency measure. With the PMPRB guidelines, we’ve seen Canada’s flawed system delay our access to Trikafta. Every day that we wait Canadians with cystic fibrosis grow sicker, and some will die. People living with cystic fibrosis don’t have time to wait. We need Trikafta now” said Kelly Grover, President and CEO of Cystic Fibrosis Canada.
The meeting fell two days after the one year anniversary of the United States Food and Drug Administration’s (FDA) approval of Trikafta. It was a painful milestone for the cystic fibrosis community in Canada, as Canadians continue to wait for access to the life-changing drug that research has shown could reduce cystic fibrosis deaths by 15% by 2030 if access is gained by 2021. It has been fast tracked for access and is accessible in other countries, including the United Kingdom, Ireland and Germany.
“This drug is too important. This is as good as it gets right now for 90% of Canadians with cystic fibrosis. Our work is to get this drug to Canadians with cystic fibrosis now, and to get the drug review process right to ensure all Canadians can access new innovative medicines for generations to come.” said Dr John Wallenburg, Chief Scientific Officer for Cystic Fibrosis Canada.
The meeting was also attended by representatives of the cystic fibrosis community, the Cystic Fibrosis Treatment Society and CF Get Loud.
A follow-up meeting will be held to continue the critical discussions and to develop a strategy for moving forward.
We would like to thank MP Elizabeth May for helping us make this all party meeting possible and Former Member of Parliament and Senator Francis Fox for chairing this important and unprecedented meeting.