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#CFcantwait Advocacy Update from CF Canada: April 30

Improving access to life-changing cystic fibrosis medications is an important priority for Cystic Fibrosis Canada. Here are the latest updates about it from our leadership and advocacy teams: 

Vertex Makes New Offer to Provinces

Cystic Fibrosis Canada and the Canadian Cystic Fibrosis Treatment Society have received positive news on our call for Vertex to immediately provide humanitarian access to modulators in the wake of COVID-19 (see our March 27 blog post). In a recent meeting with Vertex, Cystic Fibrosis Canada learned that the company made an offer to the pan-Canadian Pharmaceutical Alliance (pCPA), the body through which provinces negotiate drug prices together.  

Vertex has made six such offers to Canadian governments, and has reportedly not received constructive feedback. As a community, we need to hold our provincial governments to account. The only way to get to and through price negotiations is for our provinces to work in good faith with Vertex, and that involves our governments telling Vertex what they need to get to a deal.  The pCPA is meeting this week to determine which offers to move forward. We wrote to the pCPA and called on our community to write to their provincial ministers of Health to  tell them to negotiate with Vertex now.

Vertex will be meeting with the pCPA next week. Make your voice heard by letting your provincial Ministers of Health know that they need to prioritize this offer now. Please send an email to advocacy@cysticfibrosis.ca to learn how you can get involved. We will report back when we receive news of how the meeting with Vertex and the pCPA goes.

Switzerland Covers Modulators

Switzerland agreed to reimburse Orkambi and Symdeko for eligible patients in Switzerland living with cystic fibrosis. The agreement also provides for possible rapid patient access to Trikafta, which is currently under regulatory review. This is just another country that is doing right for people with cystic fibrosis while Canada sits idly by. Cystic Fibrosis Canada continues to push for access. 

Petition to Repeal PMPRB Changes

CF mom and BC Cystic Fibrosis Canada Advocate, Jocelyn James, has started a petition calling on the federal government to repeal changes to the Patented Medicines Price Review Board (PMPRB) so that more revolutionary therapies to treat CF and other rare diseases can be brought to Canada. Please show your support by signing and sharing the petition.

Ontario Health Minister Blames Lack of Access to Modulators on COVID-19

Cystic Fibrosis Canada called on Ontario Health Minister Christine Elliott to stop making excuses and grant access to CF modulators now. Our Chief Scientific Officer, Dr. John Wallenburg sent a letter to Health Minister Christine Elliott, noting that she has had 670 days as minister to fix this problem, and instead, has done nothing. People in Ontario with CF deserve a minister who can get the job done.

Alberta Health Minister Meeting

Members of our National Advocacy Network met with Alberta Health Minister, Tyler Shandro and Chad Mitchell, Assistant Deputy Minister (ADM), Pharmaceutical and Supplemental Benefits Division. Directing his ADM to provide further details, the Minister agreed to review information on the PMPRB and fast-tracking Trikafta, and on expanding access to Orkambi. 

The ADM is working with Alberta advocates to provide this information to the minister and will have a follow up meeting in a month. Thanks to the tremendous work of Team Alberta on this meeting. We are thrilled that we can provide training and support to help you advocate!

 Constituency-Based MP Meeting Challenge

Our National Advocacy Network is holding constituency based virtual meetings with Members of Parliament across Canada as part of our Cystic Fibrosis Awareness Month efforts. Our goal is to meet with as many of the 338 federal Members of Parliament. Interested in putting your MP on the map? Please send an email to advocacy@cysticfibrosis.ca to learn how to get involved.

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