Advocacy updates and latest news – January 29

Advocacy UIpdates

JANUARY 29, 2021

Read the latest advocacy updates from Cystic Fibrosis Canada.

Trikafta Review: Making CF Voices Heard

Thanks to all of you who filled out our community survey on access to Trikafta. The survey is now closed. Overall, we received almost 1500 responses, which will be used to show the need for broad public coverage of Trikafta to bodies like the Canadian Agency for Drugs and Technologies in Health (CADTH), Quebec’s Institut national d’excellence en santé et services sociaux (INESSS), and BC Pharmacare that make recommendations to our public drug plans regarding whether or not to list and cover the cost of a drug.

Cystic Fibrosis Canada will be analyzing survey responses to support our submissions to these regulatory bodies, ensuring that patient voices are heard as they conduct their reviews of Trikafta. Should you be interested in viewing the submissions, our final submission to CADTH will be available on our website on February 12, 2021 and the INESSS submission will be available on February 24th, 2021.

Working together to bring about change

Building on the success of the all party caucus from fall, CF Canada started a CF Round Table to bring together key CF groups and members of the community to work on common advocacy initiatives. The Round Table includes CF Canada, CF Get Loud, the CF Treatment Society and CF Canada provincial advocates and members of our Government Relations Advisory Panel, including former Parliamentarian and Senator, Francis Fox, who is also a CF grandfather.

The Round Table is currently working on building tailored provincial advocacy strategies, where required, to ensure speedy access to Trikafta and other modulators like Orkambi and Kalydeco

Should you have any questions about this work, please contact Kim Steele, Director, Government and Community Relations at

Continuing our All Party Approach to Access Trikafta

As part of our strategy to help move Trikafta through the drug review process as quickly as possible, we’re planning provincial Emergency All Party Meetings on Access to Trikafta, using the same approach that proved successful at the federal level in October, 2020. The meetings that we will host together with the CF Canada National Advocacy Network, CF Get Loud and CF Treatment Society, give the opportunity for supportive MPPs from all parties to help strategize on how to achieve timely access to Trikafta in their province with an all party approach.

In Ontario, this initiative has already started with Members of Provincial Parliament (MPPs) who have shown such tremendous support for the CF community being invited to participate in the first Ontario All Party Emergency Access to Trikafta meeting hosted on Wednesday February 3rd 2021.

In the meantime, Trikafta continues to move through the drug review and reimbursement system.

Access to CF Modulators Webinar Series

Trikafta : How to advocate for access
Join us on February 18th to learn more about the canadian political environment and how you can advocate for access to Trikafta. In this webinar, an expert from Hill & Knowlton in the drug-approval political environment will explain Trikafta’s position in the system and the road ahead before the treatment is in the hands of those who need it.

6:00 -7:00pm EST Thursday 18th February, 2021
Special guest speakers:

  • Michelle McLean, Senior Vice President, Hill & Knowlton Canada. An experienced lawyer, public affairs and communications professional in both the corporate and not-for-profit sectors. As National sector lead for Health + Wellness, Michelle provides strategic counsel and support to a wide array of communications and public affairs clients.
  • Patti Tweed and member of Cystic Fibrosis Canada’s National Advocacy Network

Hosted by Eric Mariglia, Associate, Government Relations and Advocacy at Cystic Fibrosis Canada

For more info : see website.

Vertex submits Trikafta to the FDA for children aged 6-11

The Food and Drug Administration (FDA) in the US has accepted a submission from Vertex Pharmaceuticals to extend approval for use of Trikafta to children aged 6-11 living with CF who have either two copies of the F508del mutation or one copy of the F508del mutation and one minimal function mutation. The priority review has set a timeline for approval for June 2021.

Trikafta is under priority review by Health Canada for people living with CF ages 12 and up. The current priority review timeline would see a verdict from Health Canada by June. This could change if Health Canada requests additional information.

The manufacturer told Cystic Fibrosis Canada that it is committed to seeking the broadest possible indications for the drug in Canada. We will continue to advocate for Trikafta to move through the Canadian drug review and reimbursement system as quickly as possible.

Further news

Walk 2021: The Early Bird Gets the Worm

The virtual Walk to Make Cystic Fibrosis History is back once again. This year we want to give you the chance to win with our first-ever early bird registration contest!
When you register today, every $25 you fundraise or donate until Thursday, February 11th, at 11:59 PST will give you one entry into our contest, for the chance to win one of three exciting prizes – including a brand-new Apple Watch S6!
Don’t miss out on the opportunity to win big and #GoFurtherFor Canadians living with cystic fibrosis. Whether you choose to walk, bike, or run, there are so many exciting ways to get involved. Register now, start fundraising or donating, and complete your challenge by Walk Day on Sunday, May 30th. Together, we will push further than we have before to change the cystic fibrosis story.
To register now and learn more about, please visit our website.

Ask the Experts COVID-19 webinar

Do you have questions about the COVID-19 vaccine and cystic fibrosis? On Tuesday, February 2 at 12 p.m. ET, experts Dr. Larry Lands, CF Physician at McGill University Health Centre, Dr. Anne Pham-Huy, Chair of Immunize Canada and Dr. Valerie Waters, CF Physician, SickKids Hospital will join Dr. John Wallenburg, Chief Scientific Officer, Cystic Fibrosis Canada to answer your questions regarding the COVID-19 vaccine. For more information or to submit questions, visit the event page.

COVID-19 Vaccine Information

We continue to monitor the current pandemic and its impact on the cystic fibrosis community in Canada, with regular updates to our website including a section for COVID-19 information. With the announcement of vaccine rollout plans, we have now added a Q&A to specifically address COVID-19 Vaccine information as it relates to our community.

In the news