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#CFcantwait Advocacy Update March 13

Cystic Fibrosis Canada
/
Advocacy

MARCH 13, 2020

What’s making headlines

Press Conferences in Ottawa, Toronto & Regina

On Wednesday March 11, Cystic Fibrosis Canada held press conferences in three cities to hold the government to account for the proposed regulatory changes that are putting patients’ lives at risk.

In Ottawa, CF Canada CEO Kelly Grover called on the federal government to halt the proposed changes to the Patented Medicine Prices Review Board and reconsider them so that access to new innovative, life-changing drugs like Trikafta will not be delayed or denied. Dr. Elizabeth Tullis described the far-reaching and significant impact of CFTR modulators. CF advocates Nadine Imbleu-Redman and Paul Redman shared their experiences and concerns, and we took questions from the Canadian Press on the effect and impact of Trikafta. Watch the news conference (starts at 12:45).

While on Parliament Hill, we had a series of conversations with MPs, a number of whom shared our concerns or showed an awareness of the issue and its impact on the CF community. These meetings resulted in several invitations to follow up, and we will. 

Kathryn Nowers, Director of Policy for Health Canada, took note of our concerns about the lack of transparency and the process of arriving at the proposed changes to the PMPRB. Although attentive to our alarm bells, unfortunately she still believes that the PMPRB can find a balance between lower drug prices and access to new innovative medicines by  the July 1 deadline. We will be taking further action as we know that it has taken the PMPRB 2.5 years to get to this stage, it is certainly going to take more than four months to make the needed changes. 

We were also able to catch up with several journalists who couldn’t attend the press conference, including reporters from CBC Radio, the Globe and Mail, CTV National News and the Canadian Press. 

On Wednesday March 11, we also held press conferences in Regina and Toronto. Watch the Toronto press conference. 

We’re sending a big shout out to the online CF community who joined us on Facebook, Instagram and Twitter. Thank you for helping us get loud for CF. Together we are stronger. 

Our upcoming plans included press conferences in other provinces, including Quebec City, Winnipeg, Halifax and Victoria. Given the precautions required to prevent COVID-19 and media attention focused on the virus, we are cancelling these events. We are however, not stopping our efforts and our thinking through our next steps to put a stop to the PMPRB changes.

Other advocacy news

PMPRB stakeholder meeting cancelled

The PMPRB stakeholder meeting that was planned for March 18 has been cancelled due to COVID-19. We will be asking for a virtual meeting with the Board and for a reconsideration of the remaining consultation period due to the impacts of COVID-19. 

Ottawa CORD rally 

On Tuesday 10 March, staff of CF Canada’s Ottawa office and board member Stuart Hodge attended the CORD Fight for Our Lives Rally at Parliament Hill, together with families and individuals from the CF community. They raised their voices alongside others in the rare disease community against the proposed PMPRB guidelines that will impact access to new life-changing drugs. We support CORD’s message and were glad to attend the rally. 

100 Day Challenge

Vertex Pharma has committed to the challenge, but the Ontario government hasn’t taken action yet. 

Gaining political support

For the first time, we’ve been receiving inbound calls from politicians. This is exciting progress and a sign that your voices are being heard. Some recent highlights:

Take Action

Are you ready to take action? Our Take Action Toolkit will help you set up meetings, talk to the media and activate your network to join the fight for access to life-saving cystic fibrosis treatments in Canada.

Share your stories on social media to let the world know that #CFcantwait! Please tag us so that we can amplify your voices. Visit our hashtag wall for inspiration. 

Use our Twitter lists to find your MP and tell them that the government needs to stop and reconsider the changes to the PMPRB so that access to new drugs like Trikafta will not be delayed or denied.   

Find more ideas and tools in our Take Action Toolkit. 

Community in Action

Check out CF Get Loud Canada, a CF community run group with a focus on advocacy and getting loud for cystic fibrosis. 

This week’s media coverage 

Did you miss it?