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The Advocacy Brief – Issue #8 – December 20, 2021

Welcome to your December 20, 2021, edition of The Advocacy Brief. Cystic Fibrosis Canada’s Advocacy Team wishes you and your family a safe, healthy and happy holiday season.

Updates on Access to Trikafta

Holding private insurers to account

Cystic Fibrosis Canada recently wrote to Canada’s private insurers calling upon them to do better for the cystic fibrosis community. Too many people are facing barriers to accessing Trikafta through private coverage, which is only compounded by other structural issues in the health systems.

Cystic Fibrosis Canada had three asks for the private insurance companies:

  • Fund Trikafta immediately, for all who could benefit.
  • Use industry-appropriate assessment tools designed for the private insurance sector, not those that are developed for Canada’s public, government subsidized insurance plans.
  • Where there are delays in obtaining individual coverage, provide timely notice of a temporary denial so people can access public coverage while they wait for private coverage to kick in.

To back up our asks, we included with the letter; Cystic Fibrosis Canada’s submission to the Canadian Agency for Drugs and Technologies in Health (CADTH), the Cystic Fibrosis Canada Accelerating Clinical Trials (CF CanACT) submission to CADTH, Cystic Fibrosis Canada’s Healthcare Advisory Council’s submission to CADTH and the guidelines for modulator use in Canada, developed by CF clinicians. All these documents provide substantive evidence of the benefits Trikafta can provide in the lives of Canadians living with cystic fibrosis.

We have since heard from some of our community members that they are receiving pre-authorization forms for Trikafta from their insurers. This is promising news. Still, we will be watching to see how the pre-authorization process works out for those who are applying for coverage.

The open letter and supporting materials are available on our website for anyone looking to self-advocate to private insurance companies regarding their own access to Trikafta.

Pushing for access to Trikata for ages 6 and up

Last week, Cystic Fibrosis Canada provided a submission to CADTH for the cost effectiveness review of Trikafta for ages 6 and up. We are also providing Quebec’s cost-effectiveness body, INESSS, with a submission for their review, today. These submissions demonstrate the significant impact that unrestricted access to Trikafta can have on all Canadians aged 6 and older living with cystic fibrosis.

Cystic Fibrosis Canada is taking the opportunities that the CADTH and INESSS reviews of 6+ provide to highlight the importance of having no upper lung function limit start criteria for any Canadians living with CF, regardless of age. When CADTH released their guidelines for Trikafta aged 12+, they stated the reason for the <90% FEV1 restriction was a lack of clinical evidence to support the benefits of Trikafta for people with higher lung function.

Clinical trials for children aged 6-11 and a study on the long- term effects of taking Trikafta clearly demonstrate that people with higher lung function measures still experienced significant benefits by taking Trikafta . We’ve woven this evidence, along with feedback from the CF community into our submissions and we look forward to sharing them with decision makers.

Moreover, recently published real-world evidence from the PROMISE study shows that Trikafta has significant health benefits to those who have lung function of 90% or greater. With this evidence in hand, now is the time for any jurisdictions that have implemented this restrictive criterion to remove it and to empower cystic fibrosis clinicians to use the CFTR modulator standardized guideline they created to manage access to modulators, including Trikafta.

Both submissions are available for you to read on our website here. [Note: documents are currently available in English only, French versions will follow shortly].

Further Advocacy Updates

Thanking supportive elected officials

To close off this historical year, Cystic Fibrosis Canada has sent thank you letters to the elected officials who have supported the CF community this year.

We wrote to thank them for their efforts to get Trikafta publicly funded in every province and territory in Canada. We also called upon them to continue to offer their support regarding the access issues many people are facing and the opportunity to get Trikafta to those 6 years and older. As well, we sked for their support to ensure a national rare disease strategy is rolled out to the greatest benefit of Canadians living with cystic fibrosis.

Together, we will go further until every Canadian living with cystic fibrosis has the long and healthy life they deserve.

Join the first #TrikaftaToday Briefing for 2022

The next #TrikaftaToday Briefing will take place on Wednesday, January 12th at 2pm/ AT / 1pm EST / 12pm CT/ 10am PT. We hope you can join us as we will run through Cystic Fibrosis Canada’s submission to CADTH for Trikafta for ages 6 and older and preview what is coming in 2022 for CF advocacy.

Don’t forget to watch the recording of the last briefing of 2021, which was a heartfelt reflection on the past year.

A note from Kim Steele

The biggest of thank yous to everyone who has helped to support our advocacy work this year. Together, we have made history, ensuring Trikafta was approved and funded in Canada at record speed. I’ve done this work for over 20 years, and in all that time, I have never met a community as committed to making change happen as this one. You are amazing.

Still, it took too long for many people and we still have a long way to go to fix the systemic issues that are causing barriers to access, and to ensure that younger Canadians don’t face similar hurdles when their time comes. I will be reaching out to many of you in the new year we so can work together on ways forward.

Until then, I hope you have a wonderful holiday season. Please take this well-deserved break, congratulate yourselves on the progress we have made so far and remember those we lost along the way.

Kim Steele,

Director, Government & Community Relations

Advocate spotlight

Name: Jen Harbin

Province: Nova Scotia

Connection to CF: daughter with CF

Years advocating: 2

Jen’s Story:

I had always wanted to volunteer for Cystic Fibrosis in some way, but I could never really turn my focus towards it. I guess life was just really busy, and I was really nervous to make a commitment to something and then not be able to follow through. I also think that deep down, I was nervous to talk to other patients and parents and face the realities of the disease. As my daughter’s health declined, 100% of my focus went towards her care. It was my every waking thought. I started to feel helpless in my ability to care for her; it was getting beyond my capabilities, and finally, the day that we didn’t think would ever arrive did. Jaimie needed a double lung transplant. As soon as I heard those words, I knew we had a story we needed to tell, and I knew it was to help others. Throughout the transplant journey, we met so many amazing people within the CF community, and we truly supported each other and were each other’s biggest fans. Once it was time to go back to “normal life”; I knew I had to stay connected, and I knew that this was finally the time for me to get involved. The relationships meant too much, the community meant too much, and nothing else made me feel as fulfilled. I met with Eric in the Cystic Fibrosis Canada Toronto office and learned about the advocacy program, and it was the perfect fit. It was exactly the way I wanted to contribute. The Provincial Advocate role was available and it all just made sense; I was going to have the ability to bring the community together in Nova Scotia and work towards significant change with an amazing team. The rest is history.

Read more of Jen’s Story on our blog.

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