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The Advocacy Brief – Issue #1

Welcome to the first issue of Cystic Fibrosis Canada’s newsletter dedicated to advocacy. We’ll bring you the latest news on accessing modulators in Canada, updates on Cystic Fibrosis Canada’s advocacy initiatives and details on how you can get involved. 

Currently, Cystic Fibrosis Canada is planning a government relations push in the lead up to the reviews of Trikafta by Health Canada and the Canadian Agency for Drugs and Technologies in Health (CADTH), which we expect to be released in late June. We’re working to keep the pressure on federal and provincial elected officials to expedite Trikafta through the review and reimbursement process and to ensure Trikafta is made widely available once through. 

While planning may have been our recent focus, we haven’t stayed quiet in the fight for access to medicines. Read on for updates on the latest advocacy news in Canada. 

Advocating for access to Trikafta and other modulators 

#CFcantwait Provincial Meeting Challenge

Cystic Fibrosis Canada is excited to be bringing back the #CFcantwait meeting challenge in 2021, this time with a focus on meeting provincial elected officials. 

Health ministers from individual provinces decide whether or not a drug is listed on their public formulary. Once Trikafta has been reviewed by the federal approval bodies in June, we want this life changing drug made available to as many Canadians living with cystic fibrosis as possible. CF Canada aims to use this meeting challenge to raise awareness in provincial legislatures of the drug access issues faced by people living with cystic fibrosis. We’re asking for commitments to be made to list Trikafta ASAP on each province’s forumarly and that the modulators currently in price negotiations – Orkambi and Kalydeco – be funded immediately. 

Last year, was Cystic Fibrosis Canada’s first #CFcantwait Member of Parliament (MP) virtual meeting challenge. CF advocates across the country booked meetings with their MPs throughout April, May and June to raise awareness of the issues cystic fibrosis patients were facing in the Canadian drug regulatory environment. 

Cystic Fibrosis Canada and these amazing advocates met with a whopping 40% of MPs. The ongoing positive effects of this challenge were felt across the country. Support in Parliament for cystic fibrosis grew significantly and actions were taken by members of every political party to do whatever they could to expedite Trikafta coming to Canada. The efforts proved fruitful with Trikafta’s application to Health Canada at the end of the year. 

Stay tuned for more information on the provincial challenge in the coming weeks. We hope everyone will get involved – there will be tools and support for those who have not done this before. 

Provincial Advocacy Initiatives

A team of Alberta advocates recently met with the Assistant Deputy Minister of Pharmaceutical and Supplementary Benefits to continue conversations regarding what his colleagues of the pCPA are doing, and in turn what Alberta can do to support access to CF medicines. The meeting proved to be highly successful, with agreement to approach the Alberta Health Minister with questions provided by our Cystic Fibrosis Canada advocates. The Alberta team is also helping other MLAs prepare questions to ask the Alberta Health Minister in Question Period. Stay tuned for more on that!

On March 10th Cystic Fibrosis Canada’s advocacy team and members of the National Advocacy Network met with the Ontario All Party Emergency Access to Trikafta Caucus, at which Members of Provincial Parliament (MPPs) and members of the CF community decided that we would focus on individual meetings and meetings with party caucuses going forward. Thank you to our colleagues at Get Loud and the CF Treatment Society for their collaborative effort as well as the elected officials who attended and provided their guidance and support. 

Further Advocacy updates

High Costs Medicines for Rare Diseases Strategy

The Cystic Fibrosis Canada advocacy team, members of the National Advocacy Network and members of the CF community participated in the government’s consultations for the development of a rare disease strategy, recently renamed to a strategy for high cost drugs. We provided a submission to their consultations which is now available on our website

The key asks in our submission were for:

  • A strategy that continually engages patients, patient groups, clinicians and researchers as meaningful stakeholders
  • Focus on value and not just cost. The current name for the strategy: “National Strategy for High-Cost Drugs for Rare Diseases”, focuses on the cost of medicines and not the value they bring to the Canadians who need them.
  • A single framework that formalizes collaboration between public and private payers and outlines a separate path for access to highly effective therapies for rare diseases.
  • Leverage existing infrastructure to develop processes. For example, Cystic Fibrosis Canada manages the Canadian Cystic Fibrosis Registry. Replicating the Canadian CF Registry across other rare diseases would expedite implementation of a drug for rare disease strategy. It would also allow our governments to make better informed regulatory, review and reimbursement choices. 

Cystic Fibrosis Canada has also worked with our partners at the Best Medicines Coalition (BMC), the Health Charities Coalition of Canada (HCCC), the Protect Our Access health charity coalition and the Canadian Organisation for Rare Disorders (CORD), inputting to these group submissions as well. 

CF Video for Ontario Premier

CF Advocate and journalism student, Kaity Brady, with help from CF Get Loud, has developed a video calling upon the Ontario government to fund Trikafta for Ontarians living with CF.

The video shows the impact of living with cystic fibrosis and sends a strong message to the Ontario Government that #CFcantwait. The video has been sent to Doug Ford, the Premier of Ontario, but the message is pertinent to all provinces across Canada. 

Please show your support for CF families by sharing this compelling video with your community. https://bit.ly/3vtVYUG    

One year since we marched on Parliament 

As March comes to a close we can’t help but reflect on the wild ride over the last 12 months. March 2020 was marked by the announcement that COVID-19  was a global pandemic. This prompted the beginning of lockdowns and significant life changes for everyone. 

March 2020 was also the time when the fight for access to CF medicines in Canada really picked up steam. CF Canada and our advocates marched on Parliament and provincial legislatures demanding change and improvements to regulations standing in the way of access to medicines. It’s been an incredible year since then. Full of highs and lows and marked by the continued wait for the closest thing to a cure most people with CF have ever seen – Trikafta. Check out this video from Kelly Grover, Cystic Fibrosis Canada’s President and CEO, as she reflects on the last year in advocacy at CF Canada.

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