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The Advocacy Brief – Issue #3 (May 18)

Welcome to your May 18th 2021 issue of The Advocacy Brief. Before we jump into the latest advocacy updates, including news of the review of Trikafta, we wanted to make sure these urgent advocacy actions are top of mind.

CF can’t continue to wait, we need your help.

It’s time to raise your voice

Access to life saving cystic fibrosis (CF) drugs, including Trikafta, remains a burning issue for Canadians living with CF. We need your help to spread the word that CF can’t wait during CF awareness month.

Four ways you can help:

  • Sign the #CFcantwait petition and help demonstrate the might of this community
  • Connect with your provincial elected official. Join the #CFcantwait Provincial Meeting Challenge to build support for CF in provincial legislatures across Canada, the decision makers for funding drugs OR if meeting your elected official is not for you, send a letter to your elected official asking them to take action in support of CF
  • Donate and raise funds to fuel the fight by participating in the Walk to Make Cystic Fibrosis History virtual event
  • Share these actions with your friends and family. #CFcantwait! Let’s shout about it!

CFcantwait Provincial Meeting Challenge: we need you!

To help get access to Trikafta, we’re challenging you to meet with your provincial elected official and tell them that #CFcantwait.

So far, members of our National Advocacy Network, as well as community members and partners across Canada have held 73 meetings with provincial elected officials.These meetings are providing an inside scoop on Trikafta’s progress through the drug review and reimbursement system. We’re finding out information we would not have had access to otherwise, and discovering allies and supporters in all corners of the country. THANK YOU to everyone who is already participating.

There is still a long way to go to reach as many of Canada’s 720 provincial ridings as possible. We need your help. Whether you are a seasoned pro or a new advocate, every voice counts and every story needs to be heard. Please see our website for everything you need to get you started with the challenge. You can also join our online, weekly community briefing sessions to hear from and share with other CF advocates and community members.

Once you are on your way, please share the challenge on your social media channels. Use the hashtag #cfcantwaitmeetingchallenge and tag @CFCanada and share your updates with fellow CF advocates across the country.

If meeting with your elected official is not for you, use our simple template letter to send the message to fund CF drugs straight to the inbox of your provincial elected official. Don’t forget to share with friends and family once you have sent yours.

CFcantwait Petition Update!

This amazing CF community has come out in spades to promote the #CFcantwait petition calling on provincial governments to fund CF drugs now. A phenomenal 18,000 people have signed the petition since it launched just over two weeks ago.

We want to go further and gain 30,000 signatures during May CF awareness month. Please share the petition with your network and ask them to sign as well. We’ll be using your signatures to tell elected officials how much support there is in their ridings for access to life-saving CF medicines! Please ask your friends and family members to sign and share today.


News on the reviews of Trikafta

Quebec continues to lead the way with community consultations

We’ve begun working with the Institut national d’excellence en santé et services sociaux (INESSS), the body responsible for conducting cost effectiveness reviews for new medicines in Quebec, as part of their community consultations on the review of Trikafta.

On May 19, Cystic Fibrosis Canada and other patient group organizations will meet to share insights on the challenges and issues the CF community is facing at the moment and the potential for improvement if granted access to Trikafta.

BC has joined the table

BC Pharmacare, the independent body responsible for conducting cost effectiveness reviews for drugs in BC, has shared their intent to evaluate Trikafta for people who are 12 and over and who have at least one F508del mutation. They have tentatively scheduled their patient group submissions for May 19-June 16 2021.

CF Canada will provide a submission that will demonstrate the impact and importance of this medication. Thank you to everyone who filled out the survey we conducted in January for earlier health technology assessments of Trikafta. The experiences and information you shared was extremely informative and painted a compelling summary of patients’ experiences. We will use this information again for the BC submission.

Individuals who live with CF and their caregivers in British Columbia will also be able to submit to the BC Pharmacare review. Stay tuned for more details.

We are greatly encouraged to see Trikafta continuing to move through the Canadian drug review and reimbursement system quickly. We will keep you informed as we find out more.

A good sign

Earlier this year, the Canadian Agency for Drugs and Technologies in Health (CADTH) outlined the timelines for their reviews of Trikafta on their website. The deadline to share a first draft with the manufacturer has now passed. We have reached out to both the manufacturer and CADTH to find out more. We’ve heard nothing to indicate this deadline wasn’t met, indicating the process is progressing as it should.

Preparing for any outcome

Here at Cystic Fibrosis Canada, we are planning for the announcements this summer from Health Canada, CADTH, INESSS and BC Pharmacare on their reviews and recommendations for Trikafta. Some provinces, like Alberta, will also do their own internal review for coverage, given that Trikafta is a drug for a rare disease. These decisions will have serious implications for access to this life changing drug for a generation.

Our goal is to be able to react thoughtfully and swiftly to any announcements, and to ensure the community is informed of the decisions and their implications. We are also working to make sure that tools and tactics are in place to apply pressure, where needed, to ensure the best possible outcome for Canadians living with CF. We may face hurdles ahead, but we won’t stop pushing.

Further News

Tell us what research matters to you

We thought you’d want to know that CF Canada is in the process of developing a new research strategy. We are inviting people living with CF and their caregivers to fill out a survey to share your insights and priorities, all of which will help guide our thinking on this strategy.

Our strategy will focus on having a greater near-term impact on Canadians with CF, while complementing global research efforts and will prioritize innovative ways to support the people living with cystic fibrosis who cannot, or do not, benefit from modulators.

Please share this survey with the people in your network who live with cystic fibrosis or their caregivers. The survey is confidential and takes 10 minutes to complete. The survey will close May 21, 2021. We look forward to sharing our new research strategy with you later in the fall.


Advocate spotlight

Mackenzie

Name: Mackenzie
Connection to CF: I first learned about CF through participating in Shinerama at university
Years Advocating: 15 months
Mackenzie’s story:
Through university I participated in Shinerama yearly, that is where I first learned what Cystic Fibrosis is. I didn’t know anyone personally who was affected by CF until almost 7 years later. A good friend introduced me to Macrina, mom of two children who are living with Cystic Fibrosis.

Towards the end of 2019 Macrina shared a template letter on Facebook, asking her friends and family to submit it to MPs. Her request was simple, so I sent it. The letter was about access to Trikafta, and asking my MP to follow-up with a meeting so that I could express my concerns about the lack of access to medicines in Ontario and Canada.

A couple of days later my MP, Anthony Rota, emailed back with a 30-minute meeting time. I took it. I messaged Macrina frantically asking her for the notes that she sends people who end up booking meetings, and she told me that I was the only one. That hit me hard. So many people had sent letters in, I saw the replies to her post on Facebook, and not one this time around had gone through with setting up a meeting.

I took the next month to learn and read everything I could about the drug pathways and medications access routes in Canada, about the history of gene modulator medicines and the landscape that Cystic Fibrosis Canada was in at the time. I met with my MP for 30 minutes on my own. I spoke from the heart, there were tears on both sides of the conversation. He committed to three actions and I told him that I would follow-up in a couple of weeks with some information that I didn’t yet have.

As soon as I walked out of that meeting I knew I wanted to become involved permanently. I completed my Regional Advocate training with CF Canada in a couple of short days online (pandemic world!) and the rest is history.

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