The Advocacy Brief – Issue # 12
AUGUST 8, 2022
Welcome to your August 8, 2022, edition of The Advocacy Brief
Trikafta is becoming more accessible in Canada
So far, it’s been a news filled summer for Canadians living with cystic fibrosis waiting to access Trikafta. Here’s a quick recap, in case you missed it:
- On July 6, the Canadian Agency for Drugs and Technologies in Health (CADTH) released a final recommendation to Canada’s public drug programs to fund Trikafta for all Health Canada approved indications. This recommendation supersedes the one from last year, which imposed restrictive lung function start criterion, and expanded eligibility to include those aged 6-11;
- On July 7, the pan-Canadian Pharmaceutical Alliance (pCPA) signed a deal confirming a negotiated price for Trikafta for six-11 year-olds
With these steps in the drug review and reimbursement process complete, it is time for individual provinces and territories to step up. Some have moved faster than others.
- Ontario became the first province to expand access to the six-11 year-olds on July 8, and the province removed the previously-imposed, restrictive lung function start criteria
- Alberta was also fast to move, announcing on July 11 that it would expand access to Trikafta to those 6 and up. Alberta was one of four provinces last year which had not imposed any overly-restrictive start criteria
- Nova Scotia announced on July 18 that they, too, will fund Trikafta for ages six and up and removed the 90% lung function start criteria. Nova Scotia confirmed that Trikafta will continue to be funded under the Cystic Fibrosis Drug Program, which means it is fully covered for all eligible Nova Scotians without any deductibles or co-pays and the public funding will be available for everyone, even those with private insurance.
- Saskatchewan announced on July 18 an intention to fund Trikafta for those aged 6 and up, effective August 1, 2022
- NIHB and Northwest Territories have confirmed funding for 6+ without undue restrictions, effective July 29, 2022.
- Today, Quebec announced that INESSS has completed their cost effectiveness review of Trikafta, positively recommending that the drug to be funded for all Health Canada approved indications and removing the previously-imposed lung function start criteria. The Minister of Health now must make the final decision on if the drug will be publicly funded. We are calling on the minister to fund the drug now. A huge thank you to every advocate, volunteer and donor for your support and hard work to make these milestones a reality. The trajectory of cystic fibrosis in Canada will be changed forever because of your contributions.
Have we heard anything from the jurisdictions that have not yet expanded access to Trikafta 6+?
Cystic Fibrosis Canada has written to the Health ministers and drug program managers of each jurisdiction that has yet to move, urging them to act swiftly to expand access to Trikafta.
British Columbia has confirmed that BC Pharmacare will start reviewing the drug in August for ages six and up. There is a possibility that the drug may not be funded for 6+ until September or October, which is unacceptable.
We are hopeful that Manitoba and the remaining Atlantic provinces will fund the younger age group in August. We continue to reach out and apply pressure to the jurisdictions yet to fund 6+, including working with members of our National Advocacy Network volunteers and community members on the ground. Please watch our social media for details on how you can help accelerate access in these jurisdictions. What can you do to help?
If you live in BC, PEI., Manitoba, New Brunswick, Newfoundland and Labrador, Nunavut or the Yukon, you can send a letter using our easy-to-use template urging your government to act now.
We also encourage you to arrange meetings with your elected officials to raise the issue of moving faster to cover the drug in your province or territory. We’ve provided updated briefing materials on our website, for relevant jurisdictions. Please reach out to advocacy@cysticfibrosis.ca if you require any further assistance with organizing meetings with elected officials.
If you live in jurisdictions that have already expanded funding of Trikafta, but still want to help, we encourage you to get active on social media. Tag Health Ministers in Tweets encouraging them to make Trikafta accessible to everyone who could benefit from it.
Keeping the pressure on private insurers
Addressing access to medicines through private insurance remains a key priority for Cystic Fibrosis Canada. We’ve met with some of Canada’s major insurers and called on them to quickly fund Trikafta for ages six and up and encourage their employee benefits plans to fund Trikafta for all of their plan members who meet Health Canada’s indications.
We’ve recently launched a webpage to provide more information on how to navigate accessing medicines through private insurance. Stay tuned, as further updates will be added to the page in the coming months, including information on navigating between public and private systems by province. We are also developing a resource kit to support you in advocating for yourself to your private insurer, and plan to offer some webinars this fall.
#TrikaftaToday Briefings
The next #TrikaftaToday community briefing will be held on Wednesday, August 10 at 1pm EST. We’ll be discussing strategies and tactics to apply pressure on the jurisdictions that have not yet listed Trikafta for 6+. Register today.
In case you missed the last briefing, the recording can be watched online here.
Going forward, the community briefings will be held monthly or bi-monthly. The briefings will continue to provide updates on Cystic Fibrosis Canada’s advocacy work and will be an opportunity to hear from the community about concerns about access to CF medicines in Canada.
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Advocate Spotlight
Name: Marilyn Snarr
Connection to CF: CF mom to Jack, 6 years old
Years Advocating: 2
Marilyn’s story:
“Through advocacy and community involvement, I found a voice I hadn’t used before. I’ve been advocating for Trikafta for the last two years and am hopeful that Jack will be able to access it soon, now that he is six. I advocate so that everyone living with CF can have the opportunity to receive the best medicines and care for their cystic fibrosis.
For my family, Trikafta represents hope. Hope for Jack’s future, hope for Jack’s health, hope that Jack gets to lead a long and happy life. When your child is diagnosed with CF, your mind immediately goes to the fear of losing them. You are hoping for new treatments to be discovered that will improve your child’s life. Trikafta is the very thing that we were hoping and praying for when we learned of Jack’s CF diagnosis.”
In the news
- ‘Transformational’ life-saving cystic fibrosis drug approved for use in Ontario patients six and older
- At long last I can breathe deeply, despite my cystic fibrosis
- North Shore family fights for child access to life-changing cystic fibrosis drug
- Alberta children can receive treatment with cystic fibrosis drug