Advocacy Update & Latest News from Cystic Fibrosis Canada: October 24

OCTOBER 24, 2020

Please see below for the latest news and advocacy updates from Cystic Fibrosis Canada this week: 


Emergency all party meeting on access to Trikafta

On Friday, October 23, Cystic Fibrosis Canada hosted an historic emergency all party meeting with approximately 30 Members of Parliament (MPs) and Senators from all parties, and cystic fibrosis advocacy groups to discuss how to get Canadians access to Trikafta. At the meeting, we asked the attendees to commit to an all party approach for access to Trikafta, and were met with strong support to move forward with a shared access strategy. 

This meeting was also attended by members of the cystic fibrosis community, the Cystic Fibrosis Treatment Society and CF Get Loud. A follow-up meeting will be held at a later date to continue the critical discussions and to develop a strategy for moving forward. For more information, please see our news release.

The New Patented Medicines Prices Review Board (PMPRB) Guidelines Have Been Released

The Patented Medicine Prices Review Board (PMPRB) have officially released their new regulatory guidelines. Our team is convening to review and assess the guidelines. We’ll share our thoughts on them as soon as we are able. 

Many who follow Cystic Fibrosis Canada will be aware that the proposed guidelines have negatively impacted access to the breakthrough cystic fibrosis drug, Trikafta. The guidelines have been through a review and consultation process that we have participated in actively, advocating for amendments that will remove barriers to access to innovative cystic fibrosis medicines, like Trikafta. 

Protect our Access Campaign

Cystic Fibrosis Canada, along with 12 other health charities and patient groups, have teamed up to launch the Protect Our Access campaign. The inter-charity coalition has formed to raise public awareness that Canadians’ access to new life changing medicines is at risk due to the PMPRB changes scheduled to take effect in January 2021. “Joining this coalition is a chance to bring these issues to the attention of more Canadians. While people with cystic fibrosis are the first to feel the negative impacts of these guidelines, many other Canadians will be next, as drugs for blindness or other diseases face a similar battle for access.” said Kelly Grover, President and CEO of Cystic Fibrosis Canada.

For more information on the campaign, and to see a full list of participating patient organizations, please see our news release. 

Federal Standing Committee on Health

MP Luc Thériault plans to introduce a motion to hold public consultations on the revised PMPRB guidelines, at the Standing Committee on Health (HESA). If passed, the recommendations from the consultations will be presented to Parliament within 30 days. As we understand it, HESA will ask for a minimum of four sessions inviting stakeholders to participate (clinicians, patient groups, researchers, industry representatives, Minister of Health and Health Canada representatives). 

Trikafta Anniversary

This week, Cystic Fibrosis Canada took note of the one year anniversary of  the U.S. Food and Drug Administration (FDA) approval of Trikafta in the United States. Since then, many other places such as  England, Scotland, Wales, Northern Ireland, Ireland, and Germany have followed suit. Kelly Grover, President and CEO of Cystic Fibrosis Canada, shared a message to the community and to the Federal Minister of Health, again publicly questioning: Canada, what are you waiting for? Cystic Fibrosis Canada will keep pushing further until Trikafta, and all CF modulator drugs are in the hands of Canadians who need them. 


North American Cystic Fibrosis Conference

The North American Cystic Fibrosis Conference (NACFC) took place virtually this year between October 21 to October 23. The annual conference brings together scientists, clinicians and care teams globally to discuss the latest advancements in CF research, care, treatments and drug developments. For more information on the NACFC and topics discussed at the conference, please visit their website

Survey on Patient Access to Scientific Articles

The Canadian Organization for Rare Disorders (CORD) is conducting a survey to understand patients needs for improved access to articles in scientific journals. Your participation will help with advocating for rare diseases. If you are interested in participating in this quick survey, you can access it here