All Covid-19 updates and resources can be found here: COVID-19 INFORMATION FOR CF COMMUNITY
Skip To Content
Volunteer Advocate
cf insights cf insights
access to medicines banner

The Advocacy Brief- Issue #7- November 25, 2021

From coast to coast Trikafta is finally here!

Every jurisdiction in Canada has now committed to publicly funding Trikafta. This week, the final jurisdiction, Nunavut, confirmed to Cystic Fibrosis Canada that Trikafta has been added to their drug formulary. This is in addition to the news last week, that Trikafta had been listed by Nova Scotia. The map is now officially all green. What an incredible milestone!

Yukon and Newfoundland and Labrador have yet to confirm start dates for funding Trikafta, though both jurisdictions have previously committed to listing Trikafta. Please keep an eye on our website for more information as it becomes available.

What an achievement!

What makes this news particularly special is the speed at which Trikafta has moved through the drug review and reimbursement process once it was submitted. While two years is more time than anyone should have to wait for a life-saving medication, once Trikafta was in the review system it moved at a rapid pace for a drug in Canada. It was only in June that Trikafta received Health Canada approval and now every jurisdiction has committed to funding this transformational drug. This pace is unheard of in the history of cystic fibrosis (CF) and extremely rare in the approval of other drugs in Canada.

We would like to take a moment to recognize the hard work of everyone in the CF community, from our advocacy volunteers, individuals who shared their stories, our clinicians, to our donors who all played a role in this rapid progress. Every meeting you held, every letter sent, every petition signature, every dollar donated and every social media post shared has helped to keep the pressure on key decision makers who took action when it was needed. Commitments to publicly funding Trikafta across Canada would not have been possible without you. Thank you.

We hear you

While this is a wonderful milestone for many, we understand that it may bring about mixed emotions. Cystic Fibrosis Canada’s President and CEO, Kelly Grover, would like you to know that we hear you. Watch her recent video on social media, or read her open letter to the community acknowledging these feelings and talking about a way forward to ensure no one is left behind.

With your support, Cystic Fibrosis Canada will continue to go further until we change the trajectory of this disease for every Canadian living with cystic fibrosis.

Funding approval doesn’t always mean access

Cystic Fibrosis Canada is aware that many people are getting caught in red tape in trying to access Trikafta through both public and private insurance. We are

  • Sending a letter from Kelly Grover to private insurers asking them to:
    • Immediately fund Trikafta for all who could benefit from it.
    • Use tools and industry-based evidence designed for the private market sector, not that which is developed for public insurers.
    • Where there are delays in obtaining individual coverage, provide timely notice of denial so people can access public coverage while they wait for private coverage to kick in.
  • We’ve made available the Trillium Drug Program and Cystic Fibrosis webinar which we arranged with the Ontario Ministry of Health. You can watch the recording to learn more about accessing Trikafta through the program on our website
  • Providing Q&As on our website about how to navigate public and private routes to access
  • Pursuing media coverage to keep the pressure on public and private payers

Plus, we invite you to join our bi-weekly #TrikaftaToday Briefings to discuss access issues and strategize on ways to advocate for improvements in the system. The next one is scheduled for Wednesday, December 8, 2021 from 1:00-2:00 pm EST. Please email advocacy@cysticfibrosis.ca. We can share the video link if you are unable to attend.

Trikafta for 6+

As you are probably aware, Trikafta has been submitted to Health Canada for a label extension for children aged 6-11. An aligned review has also been granted, meaning CADTH and INESSS will conduct their cost effectiveness reviews alongside the Health Canada review.

Cystic Fibrosis Canada will take this opportunity to emphasize the benefits of Trikafta for the entire 6+ CF community, regardless of their lung function. We are drawing upon the data compiled in our survey conducted in January of this year as well as recently published data from the clinical trial on 5-11 year olds to provide submissions to CADTH And INESSS. Stay tuned for more as we will share the submissions on our website when available in December.

INESSS will also conduct a cost effectiveness review of Trikafta for the Quebec market. Individuals living in Quebec are welcome to submit to INESSSS. You can find more information on how to make a submission on the INESSSS website. Submissions to INESSS are due by December 20th.

Share your Trikafta journey

If you or someone you know has recently started or will soon be starting on Trikafta and is interested in sharing your journey, please get in touch. We’d love to talk about the different experiences of people with this drug. Please send an email to hello@cysticfibrosis.ca.

Further Advocacy News

Federal Speech from the Throne

On Tuesday, the Governor General opened Parliament and delivered the Speech from the Throne which outlined the federal government’s agenda for the upcoming Parliamentary session. Cystic Fibrosis Canada hoped to see a renewed commitment to a nation-wide strategy to improve access to drugs for rare diseases. However, there was no mention of this strategy.

In the 2019 federal budget, the government promised to invest up to $1 billion over two years, starting in 2022-23, with up to $500 million/year afterward to help Canadians living with rare diseases access the drugs they need. This commitment was reaffirmed by the government in both 2019 and 2020, and the government has held consultations with key stakeholders, including with members of the rare disease community and Cystic Fibrosis Canada.

We are very disappointed the government failed to acknowledge the rare disease strategy as a priority. As always, this challenge will not stop us and Cystic Fibrosis Canada will push further to bring about the change that our community, and many others with rare diseases need.

We will continue to work with our coalition partners and community members to urge the government to establish a nation-wide approach to improving access to these life-changing medicines to ensure that no one is left behind.

Meet Cystic Fibrosis Canada’s newest advocacy team member – Ryan Fedurco

Name: Ryan Fedurco

Role at Cystic Fibrosis Canada: Associate, Government Relations and Community Engagement

Years Advocating Professionally: 5

Ryan’s story:

Ryan is excited to be joining CF Canada, especially during this time of important change in the CF treatment landscape and is looking forward to working with the Canadian CF community to improve access to life-changing and life-sustaining medicines. Moving forward, Ryan will be the primary contact for CF Canada’s National Advocacy Network and will serve as a government relations resource for volunteer advocates.

Over the last three years, Ryan has been a Public Affairs and Communications Coordinator with the ALS Society of Canada. In this role, he supported ALS Canada’s advocacy team in improving access to healthcare, therapies, and research funding for the ALS community, developed resources for government audiences, and analyzed government policies, reports, and legislative initiatives to target areas of importance to ALS Canada.

Prior to this, Ryan has held roles at World Vision Canada, Global Affairs Canada, and the United Nations Association in Canada, where he has been involved with stakeholder relations, the coordination of events on Parliament Hill, monitoring policy and government changes, and government communications.

For any advocacy-related support, please feel free to contact Ryan at advocacy@cysticfibrosis.ca.

In the News

Global News: Ontario cystic fibrosis patients with private insurance face challenges accessing ‘miracle’ drug Trikafta: https://globalnews.ca/video/8385021/ontario-cystic-fibrosis-patients-with-private-insurance-face-challenges-accessing-miracle-drug-trikafta/

Ottawa Citizen: 23-year-old Stittsville student learns life is worth less than the drug that could save it https://ottawacitizen.com/news/local-news/23-year-old-stittsville-student-learns-life-is-worth-less-than-the-drug-that-could-save-it

In case you missed it

  • Read Kelly Grover’s open letter to the community
  • Watch the Trillium Drug Program and Cystic Fibrosis webinar
  • Read the press release regarding Nunavut listing Trikafta
  • Read the latest Advocacy Brief Special Bulletin – Trikafta is coming to Northwest Territories and NIHB