CF CANADA

Dear Amy,

I write today to thank you for taking action on behalf of the cystic fibrosis (CF) community in Canada. You have raised your voice for access to life-changing medicines and together we are being heard.

Your support has helped Cystic Fibrosis Canada reach 99% of MPs in Canada and our cries for access to CF modulator drugs, including Trikafta, have been raised in Parliament countless times including today. 

Just this fall your actions have helped Cystic Fibrosis Canada:

• Present our urgent case to the Federal Minister of Health, Patty Hajdu and confirm her commitment to fast track Trikafta when the manufacturer applies
• Initiate an all-party approach to help gain access to Trikafta, as a result of the historic emergency meeting we held that included members from every political party, including the Parliamentary Secretary to Health.
• Inspire more Members of Parliament (MPs) to be champions for our cystic fibrosis community, shown recently with their unanimous support in the House of Commons Standing Committee (HESA) for a motion for further consultation on the PMPRB guidelines
• Educate all MPs in Canada and implore action via a letter writing campaign that saw 5,500 letters sent to 99% of MPs across the country, with responses from countless MPs

You have helped make an incredible difference and Cystic Fibrosis Canada is right alongside you pushing further… 

To influence government decision makers, today, we have submitted our recommendations to HESA for the consultations on the revised PMPRB guidelines. We are working closely alongside CF Get Loud, CF Treatment Society and the Canadian Organisation for Rare Disorders (CORD) to work towards a unified front with the whole CF and rare disease community.

We are also planning a second meeting with representatives from all parties to move forward an all party approach to bring Trikafta to Canada now. We will have more updates for you in the coming weeks.

And we continue to push on the provinces to expedite the pricing negotiations for CF modulators already approved for sale in Canada.

In addition to our government outreach, we’re working to raise public awareness among Canadians about the regulatory barriers preventing access to needed life changing drugs by:

• joining a coalition of 13 health charities and patient groups representing 3 million Canadians to ensure the broader public knows the impact the changes to the PMPRB guidelines will have, not only on the CF community, but on all Canadians.
• raising the issue to build  public awareness via media coverage in more than 90 news outlets including the National Post, Toronto Star, Globe and Mail, Global News.
• supporting members of the community to share their stories in media interviews and through social media

Finally, we are an intervenor in a judicial review in the Superior Court of Quebec, which is challenging the PMPRB’s jurisdiction to set drug prices. As an intervenor we provided testimony on the impact the PMPRB guidelines, if implemented, will have on the cystic fibrosis community.

Make sure to read our blog for our latest advocacy updates.

Please visit protectouraccess.ca and send a letter to key health decision makers, urging them to reconsider the PMPRB guidelines.

Alternatively, please consider joining our National Advocacy Network, which has over 250 advocates  who work with us to improve access to medicines and quality CF care, on behalf of the CF community. For more information please contact advocacy@cysticfibrosis.ca

Thank you for being with us every step of the way. Together, we will continue our relentless push to ensure all Canadians with cystic fibrosis have access to the life-changing medicines they need now and in the future.

Yours,

kelly grover

Kelly Grover
President and CEO
Cystic Fibrosis Canada