Advocacy updates and latest news - February 12
FEBRUARY 12, 2021
Trikafta review timeline updates
Trikafta continues through the Canadian drug review & reimbursement process, currently under review with Health Canada, CADTH and INESSS.
CADTH has updated their website with the current planned timeline for their review of Trikafta. The schedule will see a draft recommendation on the cost effectiveness of Trikafta provided by June 30, 2021.This is the expected timeframe for their aligned review and will see their recommendation shared one month after Health Canada completes their review of Trikafta. Both timelines would change if either body needs to request further information. INESSS is yet to confirm a timeline, but usually shares recommendations 1-2 months after CADTH. We are yet to hear from BC Pharmacare on when we can expect a review for Trikafta in BC.
Submissions for the CADTH/ INESSS reviews of Trikafta updates
Cystic Fibrosis Canada’s submission on behalf of the CF patient community in Canada has been sent to CADTH and is now available on the website. Thank you to the over 1,500 people living with CF and their families who filled out our survey informing our submission.
If you live in Quebec, individual submissions for INESSS can be made up until February 24, we highly encourage everyone to share their voices directly with INESSS as well. Our submission to INESSS will be available on February 24th, 2021.
Consultations on the Strategy for High Cost drugs for rare diseases
The Canadian Government’s 2019 budget included implementing a strategy for high cost drugs for rare diseases. In order to meet their proposed timeline, Health Canada is currently seeking input from the rare disease community on their proposal. They are seeking feedback in three different ways:
- Holding consultations with key stakeholders. Cystic Fibrosis Canada has attended four consultations so far and taken part in the surveys and feedback opportunities these provide.
- They have launched an online survey which is open to the public to fill out. In addition to the documentation provided by Health Canada, we are developing a one page guide to help you fill out the survey. This will provide feedback on how their proposals could affect people living with CF. While we appreciate the thought and care the government has put towards this feedback opportunity, it is largely inaccessible for most people, a sentiment we will note in our feedback.
- They are also taking written submissions on their strategy proposal. CF Canada will submit feedback on our position.
Access to CF Modulators Webinar Series
Trikafta : How to advocate for access
Join us next Thursday as guest speakers Michelle McLean, expert in the drug-approval political environment, and Patti Tweed, member of Cystic Fibrosis Canada’s National Advocacy Network, explain Trikafta’s position in the canadian political environment and how you can advocate to get Trikafta in the hands of those who need it.
6:00 -7:00pm EST Thursday February 18, 2021
Hosted by Eric Mariglia, Associate, Government Relations and Advocacy at Cystic Fibrosis Canada
To attend : https://us02web.zoom.us/j/87186551060
For more info : https://bit.ly/3rj7NKb
Ontario budget consultations
As Ontario leads up to the spring 2021 budget, Cystic Fibrosis Canada will share a formal Pre-Budget Submission as part of the Ontario consultation process. The final submission will be posted online.
On February 10th, 2021, Cystic Fibrosis Canada, The Cystic Fibrosis Canada National Advocacy Network (NAN) and CF Get Loud hosted an Emergency Access to Trikafta Meeting. The meeting goal was to start building a strategy for timely access to Trikafta in Ontario with an all party approach. Members of Provincial Parliament who have shown such tremendous support for the CF community were invited to the meeting. Our goal is to develop an all party caucus focused on developing an access strategy for Trikafta.
The first meeting was very successful having representatives from all provincial parties sharing their ideas on how to effectively advocate for access to Trikafta.
Community round table update
We continue to collaborate with our colleagues from CF Get Loud and the CF Treatment Society through our CF Roundtable. This roundtable helped to bring about the Emergency Access to Trikafta All Party Caucus at the federal level, which helped to apply pressure on the minister to get Health Canada approval going.
It has also been instrumental in creating a similar caucus in Ontario, which just met this week. There are other provincial advocacy teams that are considering how this model may work in their political climates, including New Brunswick, Manitoba and British Columbia.
The focus of these provincial efforts is to secure fast and comprehensive coverage of Trikafata and the other modulators that are currently under price negotiations, Kalydeco and Orkambi.
Want to take part in CF research?
Researchers at McGill University and SickKids Hospital are working on a project related to personalized treatments for people with cystic fibrosis. As part of this project, researchers at McGill University are conducting focus groups to better understand CF patients’ experiences in research and treatment.
The researchers are looking for both Canadians living with CF and/or caregivers across Canada to participate in a virtual focus group. During these sessions, participants will be asked about their expectations, feelings, and knowledge regarding the use of stem cells and genomics to predict drug responses in CF patients.
The small, online focus groups of between 3-5 participants will be held over Zoom or Webex, and the time commitment is two hours. Anyone interested in learning more is encouraged to contact Thu Minh Nguyen at firstname.lastname@example.org Study participants will receive compensation of $25 for their time.
This research project is part of a larger Genome Canada study which received funding from Cystic Fibrosis Canada – just one of the ways we are committed to going further for people living with cystic fibrosis and their families.
A huge thank you to everyone who participated in the virtual 2021 Walk to Make Cystic Fibrosis History, early bird contest. Now that the contest has come to a close, we’re so excited to share that with your support, you have helped raise $100,000 and counting – an incredible start to our Walk fundraising!
Your gifts and fundraising efforts are incredibly important and will help us to #GoFurtherFor all Canadians impacted by cystic fibrosis! Stay tuned as we announce the winner for the early bird registration contest in the coming weeks.
Help us keep the momentum going! You can still register to participate in the virtual Walk to Make Cystic Fibrosis History. Fundraise or donate, and complete your challenge by Sunday, May 30th, and join other participants nationwide as we push through barriers and go Further than ever before for all children, parents and individuals with CF.
In the News
- HealthInsight.ca: Clinical Trials are Vital for Rare Disease Treatments
- CBC: Cystic fibrosis advocate asks P.E.I. to fast-track coverage of new ‘mind-blowing’ drug