Advocacy Update & Latest News from Cystic Fibrosis Canada: November 7

NOVEMBER 7, 2020

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


House of Commons Standing Committee

On Monday, October 26, 2020, the House of Commons Standing Committee on Health (HESA), voted to support a motion for further consultations on the PMPRB guidelines conducted by the HESA committee. HESA is a committee responsible for the oversight of Canadian health issues.

Cystic Fibrosis Canada provided a written submission to the first part of the study’s consultation process. In preparing our submission, we worked closely with CF Get Loud, CF Treatment Society the Canadian Organization for Rare Disorders (CORD), Best Medicines Coalition (BMC), and the Health Charities Coalition of Canada (HCCC). We have also requested to be present at the committee hearings which are due to take place before committee members by the end of the year.

PMPRB Guidelines and Upcoming PMPRB Webinar

On October 23, 2020, the Patented Medicines Price Review Board (PMPRB) released the final version of the revised guidelines which will come into force on January 1, 2021. We are disappointed that the new guidelines do not appear to have factored in any of Cystic Fibrosis Canada’s recommendations that were submitted during the guidelines consultation process, nor do they keep patient voices at the centre. For more information on our position on the guidelines, please visit our website

On November 20, 2020 from 1:30PM to 2:30PM (EST), the PMPRB will be hosting a public webinar to communicate key elements of the guidelines and address questions. The registration link  will be available a few hours before the webinar and can be accessed on

All Party Caucus Meeting

We are working on scheduling the next meeting for the all party emergency access to Trikafta caucus. We will provide more details when available. The caucus has been formed to find all party solutions to getting Trikafta into the country and into the hands of those who need it.


Canadian Clinics Meeting 

The Canadian Clinics Meeting took place on November 4, 2020, and was attended by clinicians and researchers from across Canada. Every year, scheduled alongside the annual North American Cystic Fibrosis Conference, Cystic Fibrosis Canada hosts separate meetings specifically for the Canadian medical community to share best practices and learnings about cystic fibrosis in Canada. 

This year,  we provided an update about the important work Cystic Fibrosis Canada has been doing over the last several months, our new strategic priorities, important changes to the healthcare and research programs, our ongoing advocacy efforts, as well as CF CanACT. 

Together, we will continue to deepen our collective understanding of the disease and drive forward innovation in treatments and care.

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. 

Didn’t get a chance to watch any of the plenaries? Check them out below:

For more information on the North American Cystic Fibrosis Conference (NACFC), please visit their website.