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Volunteer Advocate


What is Symdeko?
Symdeko is a precision medicine that is used to treat cystic fibrosis in people who have a particular set of genetic mutations. A disease-modifying therapeutic, it is a combination of two drugs, ivacaftor and tezacaftor.

Who can potentially benefit from Symdeko?
In Canada, the medicine is approved for use in people ages 12 and older who have people who have the F508del mutation in both of their cystic fibrosis transmembrane conductance regulator (CFTR) genes, or who have one copy of the F508del mutation plus one of the following mutations in the CFTR gene: P67L, D110H, R117C, L206W, R352Q, A455E, D579G, 711+3A→G, S945L, S977F, R1070W, D1152H, 2789+5G→A, 3272-26A→G, and 3849+10kbC→T.

Why isn’t Symdeko covered by provincial health plans?
For a drug to be covered by provincial health plans, it has to be submitted for review to the Canadian Agency for Drugs and Technologies in Health (CADTH) and, in Quebec, to Institut national d'excellence en santé et services sociaux INESSS. These agencies make recommendations to the provincial, territorial and federal drug programs.

Symdeko’s manufacturer, Vertex Pharmaceuticals, has not made the necessary submissions. Until they do, there can be no public coverage of Symdeko. The medicine is available through some private and/or employee benefits plans.

CF Canada continues to push Vertex to put Symdeko through Canada’s drug review processes.

What can I do to advocate for Symdeko to be covered by public drug plans?
Nothing can happen until Vertex Pharmaceuticals submits Symdeko to CADTH and INESSS. In the meantime, you can join CF Canada in advocating for a drug review system that enables access to new life-changing medicines.

Stand up and make your voice heard. Meet with your elected officials. Demand that the federal government halt the changes to the PMPRB. Join our National Advocacy Network. Share your access stories on social media using #cfcantwait, and tag your elected officials.

Write to and meet with your provincial and federal elected officials. CF Canada’s advocacy toolkit will help you have these conversations.

Visit our ‘How to Take Take Action’ webpage for ways to support our current advocacy work.

What is Cystic Fibrosis Canada doing to advocate for access to Symdeko?
At this critical time, access to life-changing CF medications, like Symdeko, is one of our most important priorities.

Our CEO, our Chief Scientific Officer, our program team, volunteers and Board have been and are working hard to ensure people living with CF in Canada have access to these medications.

Find out more about CF Canada’s work to gain access to life-changing medications, including an advocacy toolkit that you can use.