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Advocacy Update & Latest News from Cystic Fibrosis Canada: July 10

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

#CFCantWait: ADVOCACY UPDATES

Cystic Fibrosis Canada’s Position on the Revised PMPRB Guidelines

The Patented Medicine Prices Review Board (PMPRB) released their new draft guidelines on June 19 and announced this week that they have extended their stakeholder consultation period from July 20 to August 4, 2020.

Cystic Fibrosis Canada is taking advantage of this extension to seek external, objective expert opinions on how these guidelines will impact access to Trikafta and future cystic fibrosis modulators. We will provide an update on our written response in the coming weeks, share tools for the community and will host a Q&A webinar before the consultation period closes.

As you may know, the PMPRB is an independent quasi-judicial body that regulates the prices of patented medicines in Canada. Cystic Fibrosis Canada and the cystic fibrosis (CF) community have been calling on the federal government to stop the implementation of the PMPRB’s previous draft guidelines that are impacting access to life-changing CF medications, like Trikafta. 

PMPRB Draft Guidelines Consultation Webinar

On Wednesday July 8, the PMPRB hosted a public webinar to respond to questions regarding the draft guidelines. We were pleased to see that our community’s advocacy efforts, which included over 900 letters being sent to the PMPRB, were recognized in the presentation.  A copy of the presentation can be found here.

Supporting our community in advocacy

Cystic Fibrosis Canada works with our community to gain access to life changing medicines. If you would like to learn more about our national advocacy network, please email us at advocacy@cysticfibrosis.ca.

Understanding the Canadian Drug System

Canada has a complex and onerous system for drug review and reimbursement. You may be wondering how bodies like the PMPRB fit into it. Watch the animated short video below for an overview of Canada’s complex drug system. 

Court Case in Quebec

We have been accepted as an intervener in a court case in Quebec that is challenging the jurisdictional rights of the federal government to make the PMPRB’s regulatory changes. Cystic Fibrosis Canada is a friendly intervener, which means we have been invited to provide information that will help the court consider the evidence presented. We have been directed to provide information on how the changes to the PMPRB will impact CF research and clinical care. 

GearUp4CF Takes a Virtual and National Approach 

GearUp4CF is a 1-2 day cycling fundraiser event offering multiple distances for all levels of riders.

The 15th annual GearUp4CF bicycle ride has gone virtual and is now open to riders across Canada! Between June 20 and July 26, cycling enthusiasts and novices alike are invited to challenge themselves to a bike ride in support of Cystic Fibrosis Canada. Donations from an event like this fund life-changing CF research, highly individualized care, and advocacy initiatives for access to life-changing CF medications. 

This year’s bicycle ride can be done your way. You may decide to commit to a 25km, 50km, 100km socially distanced bike ride, or you may choose to use a stationary bike in the comfort of your own home. The choice is yours! Simply register for the virtual ride, start fundraising, and  complete your challenge by July 26. 

During your challenge, be sure to let us know how many kilometres you’ve cycled by using the hashtags, #GearUp4CF and #rideyourway4CF in your social media posts! If you have any questions related to the virtual event, please send an email to bcinfo@cysticfibrosis.ca

COMMUNITY IN ACTION

Cystic Fibrosis Documentary Wins “Best Picture” at LA Film Festival

In a recent news update, we shared with you “Inhale,” a mini-documentary starring the Chappel family from London, Ontario and their 8-year-old daughter, Kaylee, who lives with cystic fibrosis. In June 2020, the film was awarded for “Best Picture”, “Best Short Documentary” and “Best Score” at the Festigious International Film Festival in Los Angeles, California.

Directed by Brian Chambers, “Inhale” is a 9 minute documentary that explores Kaylee’s struggle with cystic fibrosis, and how it has helped the Chappel family “live in the moment.” Congratulations to the production team and to the Chappel family on this incredible win!

Tell us how you are spreading awareness about CF! Contact social@cysticfibrosis.ca to share your update and your news could be featured on our blog or social media.

IN THE MEDIA

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