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Volunteer Advocate

Access to Medicines

Access to medicines is a huge priority for everyone in the cystic fibrosis (CF) community. 

Highly effective CFTR modulator therapies now exist, improving health outcomes and helping people with cystic fibrosis live longer, healthier lives. 

Unfortunately, a lack of access to these medications means that very few people living with CF in Canada currently benefit from these advances. 

Cystic Fibrosis Canada is calling on government to implement a fast and fair process for disease-modifying therapies like Trikafta. We also apply pressure on provincial governments to cover symptom management drugs for CF.  We have had successes, but there are still far too many gaps in access to CF medications and disparities among provinces in how they are funded. 

In the fall of 2019, the newest CFTR-modulating medication, Trikafta, was designated a breakthrough medication in the U.S. and fast-tracked for approval. CF Canada and the Canadian CF community sprang into action, working hard to overcome the barriers to access for Trikafta in Canada. Learn more about Trikafta

For the latest news on CF Canada's advocacy work, please visit our blog.

Important DRUG ACCESS priorities 

Our CEO, Chief Scientific Officer,  program team, volunteers and Board are pushing for three things:

Our work towards this includes: 

Kalydeco (ivacaftor) is a pill for people ages 6 and older who have the G551D mutation of CF which helps the defective CFTR protein work at the surface of the cell.

Orkambi (lumacaftor/ivacaftor) is indicated for the treatment of cystic fibrosis (CF) in patients 2 years of age and older who are homozygous for the F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene.

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 drug, it is a combination of ivacaftor and tezacaftor. 

Trikafta (elexacaftor/ivacaftor/tezacaftor) has not been submitted for approval in Canada. CF Canada is pushing hard for Canadians to have access to this life-saving medication. 

Understanding the Canadian Drug System

Canada's drug review and reimbursement system is already onerous, duplicative, and inadequate. It can take between 2-5 years for some drugs to get to patients, and even longer for precision medicines and drugs for rare diseases, if these medicines get to patients at all. These regulatory changes will make it even more difficult to get life-changing and life-saving medicines to patients.

pCPA Negotiations with the Drug Manufacturer

On June 12, 2020, in a promising development for Canadians living with cystic fibrosis, the pan-Canadian Pharmaceutical Alliance (pCPA) announced their agreement to begin negotiations with CF drug manufacturer, Vertex Pharmaceuticals.

This pCPA is made up of drug program leaders from all provincial, territorial and federal governments who work collaboratively to negotiate drug prices for their repsective programs. Its pricing decisions are a precondition of having a medication covered on provincial drug formularies.

The two medications subject to negotiations, Orkambi and Kalydeco, are known as CFTR-modulators. Rather than just treating symptoms, these drugs target the basic defect from specific mutations that cause cystic fibrosis (CF).

This is a positive step in a complex process.

For more information please see the Q&A.