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The Advocacy Brief – Issue #10 

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Cystic Fibrosis Canada
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Advocacy

JUNE 3, 2022

Welcome to your March 23, 2022, edition of The Advocacy Brief.   

Trikafta Update 

With Health Canada expected to approve Trikafta for 6-11 year olds in April this year, Cystic Fibrosis Canada is working on the next big push to get Trikafta funded in Canada for all who could benefit. The CADTH and INESSS reviews of Trikafta for 6+, provided opportunity for the manufacturer to submit new evidence that demonstrates the effectiveness of Trikafta for people with lung functions above 90%. This evidence also strengthens our ask: that all public drug plans should fund Trikafta for all who are eligible.  

We are calling on the provinces and territories that adopted the < 90% lung function access criteria to remove it and ensure no similar restrictions are implemented for 6+. We will also push for jurisdictions that made Trikafta accessible to all who could benefit 12+ to continue to lead the way and adopt similar funding guidelines for 6+.  

We will leave no one behind and will keep going further until every Canadian living with cystic fibrosis has access to the medicines they need. This includes ensuring that private insurers also move quickly to cover Trikafta for their plan members who could benefit from it. Watch for future Advocacy Briefs for more information and  actions you can take to push for access. 

#CFCANTWAIT Ontario Election Campaign to Improve Access to CF Medicines

Too many people in Ontario continue to face complex drug access issues, including having to pay high deductibles to access public coverage  for Trikafta and other modulators. The province’s broken drug access system  is causing widespread access issues and needs fixing.. With an election scheduled for June 2, 2022, Cystic Fibrosis Canada has launched our #CFCANTWAIT Ontario Election Campaign, to provide Ontarians affected by CF with the tools and knowledge needed to make sure drug access is on the radar of all MPPs and candidates. Cystic Fibrosis Canada also provided a pre-budget submission to the Ministry of Finance. No matter who takes office, their first job should be to cut the red tape that is preventing people from accessing life-saving and life-changing medicines. 

 Please be sure to check out or #CFCANTWAIT Ontario Election Campaign page for tools  you can use to schedule and hold meetings with your MPP. From a template meeting request letter and an overview of how to hold meetings, to a toolkit to help you prepare and a briefing kit for your MPP, we have all the materials you need to hold a successful meeting. We also have available webinars that will walk you through the current political landscape, give you tips on how to hold successful meetings and effectively tell your story. Our Government and Community Relations team is here to advise you on how to get and prepare for a meeting.  

We can also attend meetings with you or pair you with a member of our National Advocacy Network. We also have volunteers on the ground who can join in meetings and provide you with insights. If you aren’t yet part of the National Advocacy Network, now is a good time to sign up! 

Don’t forget to report back after your meeting using our online form. Reporting is essential to helping us track which MPPs have been met with, and which haven’t. Watch our campaign website for regular update on who has been met with and where you can help fill in the gaps! 

#TrikaftaToday Briefing 

Join the next Trikafta Today Community Briefing on Wednesday March 16, 2022 at 1pm EST. We’ll discuss the upcoming #FurtherTogether Provincial Meeting Challenge and how you can help advocate for accelerated and affordable access to cystic fibrosis medicines for all. Register today to join the webinar or be on the list to receive the recording.  

Further Advocacy Updates 

New PMPRB Court Decision good news for CF 

Do you remember way back in 2020 when the cystic fibrosis community came out in force to fight the proposed changes to the PMPRB drug pricing guidelines that were stopping Trikafta from coming to Canada?  

In case you’ve missed it, there has recently been some really good news regarding these changes.  

Cystic Fibrosis Canada had previously joined the court case against the changes to the PMPRB, and in February 2022, the Quebec Court of Appeal struck down some of the most concerning changes to the PMPRB guidelines. While we hope this will result in a re-write of the guidelines and help future CF drugs come to Canada sooner, we are meeting with representatives from Health Canada to see what their next move is. Please watch for future Advocacy Briefs for updates. You can also find out more on our website about the current legal situation. 

Feeding back on the CADTH common drug formulary  

Cystic Fibrosis Canada wrote to the Canadian Agency for Drugs and Technologies in Health (CADTH) regarding their consultations on a Canadian common drug formulary. Phase 1 of the formulary rollout is set to include commonly prescribed drugs for diabetes, cardio-vascular diseases, and psychiatric illnesses. While most CF specific drugs do not fall under their current purview, some drugs taken by people with CF to treat associated issues could be covered.  

Given that 34% of Canadians with CF have Cystic Fibrosis Related Diabetes and that many people with CF and their caregivers experience mental health challenges, Cystic Fibrosis Canada urged CADTH to ensure that Canadians with CF who live with diabetes and/or mental health issues, as well caregivers who have mental health issues, be included expanding access to commonly prescribed therapies in Phase 1 of this work. If these drugs are part of a common drug formulary, it will make them more consistently available to every Canadian who needs them. 

The coalitions that Cystic Fibrosis Canada belongs to also submitted feedback to CADTH, including the Health Charities Coalition of Canada, the Best Medicines Coalition, and Protect Our Access.  

Raising awareness on Rare Disease Day  

Cystic Fibrosis Canada provided key facts & messages to several elected officials for Rare Disease Day (Monday, February 28th) across the country and encouraged them to continue to support their constituents living with CF. Thanks to our team of hard-working advocates for making sure these messages got into the hands of key decision makers. 

MLA Shane Getson made a video for Rare Disease Day and highlighted the importance of making therapies available to all, especially for diseases like cystic fibrosis. Watch his video here:

If you missed the special Rare Disease Day edition of the #TrikaftaToday Briefing you can watch it here:

Advocate Spotlight 

Name: Amanda Bartels 
Province: Alberta 
Connection to CF: Woman (wife and mom) with CF 

Amanda’s story: 

Describe your fondest memory as a CF advocate so far.  

We have had the privilege of meeting with drug managers in Alberta.  At one meeting, I told my story and how quickly and efficiently Trikafta began to work in my body.  We could tell that this personal account of dramatic and quick improvement emotionally moved the meeting participants.  That same drug manager called me for a quote to include in the provincial press announcement the day before the announcement was made and I could tell it was a phone call he was very happy to make, knowing how much it meant to myself and all other Albertans with CF. 

Read more of Amanda’s story on our blog.  

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