Getting Up To Speed …CF and Trikafta

Posted By on September 22, 2021

Dear advocacy supporters,

Yesterday, we received news that another milestone towards access to the life-changing cystic fibrosis (CF) drug Trikafta has been reached. The public payers’ review body, CADTH, released its final recommendation to reimburse Trikafta (the draft was released in July). It wasn’t everything we hoped for, but we were pleased to see that in a very rare move by CADTH, changes that YOU, the CF community, CF clinicians and Cystic Fibrosis Canada have fought for, were made. Changes that will directly and positively impact many Canadians living with CF in accessing the drug.

In quick succession, the PCPA (which negotiates drug pricing on behalf of the provinces) has today announced that they have reached an agreement with Vertex, the manufacturer of Trikafta.

With these important milestones met, it is more critical now than ever that we urge our provinces to act immediately and fund Trikafta for ALL who can benefit.

Read on for a brief summary of what’s happened, what it means and how you can help us by kicking up a storm on Twitter.

Getting you up to speed!

Every publicly funded drug in Canada must go through a cost effectiveness review conducted by government bodies, CADTH (for most provinces), BC Pharmacare (for British Columbia) or INESSS (for Quebec). The subsequent recommendations help to inform the provincial decision makers on criteria for the funding of that drug on their public drug plans.

Recently, Trikafta has been going through this process. In July, a draft recommendation for Trikafta was released from CADTH and it was not what Cystic Fibrosis Canada hoped for. The draft recommendation was short-sighted, overly restrictive and seemed not to recognize the complexity of CF.

Specifically, one criterion they recommended for access to the drug would see 27% of eligible Canadians excluded; mostly children and youth. This would mean children are forced to decline in health, suffering irreversible organ damage, before qualifying for the drug – utterly unacceptable.

Additionally, criteria they recommended for continuation on the drug was far too narrow and did not consider the different ways that people experience CF and the different clinical benefits that could indicate the drug is working. This would risk patients having to discontinue the drug because they don’t meet the narrow continuation criteria, when in fact it is working for them.

When Quebec body INESSS released their recommendation, it was better on the continuation criteria, but was similarly disappointing on initial access.

Cystic Fibrosis Canada, CF clinicians across Canada and the whole CF community fought back hard on these recommendations; speaking to media, meeting government officials, writing open letters and opinion editorials and speaking out as loudly as possible.

So what happened yesterday?

Yesterday, CADTH released its final recommendation for the reimbursement of Trikafta.

In a move we’ve not seen with any other cystic fibrosis drug (and rarely with any drug), CADTH made significant changes to its draft recommendation – changes that reflect some of the criteria that Cystic Fibrosis Canada and our community fought for! Now, their recommendation to qualify for continued coverage of Trikafta is more inclusive and reflective of the nature of CF, meaning once you’re on the drug, there are more ways to show positive outcomes and to continue on it.

Unfortunately, we did not see the changes we need in the recommended criteria for access, despite fighting hard to explain why they are wrong. This means, if provinces follow the recommendation, 27% of eligible Canadians, many of our children and youth, will not qualify to access Trikafta publicly and will be forced to decline in health before they get the medication they need. We will not stand for this and will take action to ensure everyone who can benefit from this drug has access to it.

Read a more detailed recap of yesterday’s final CADTH recommendation in CF Canada’s Advocacy Brief: special bulletin.

What’s next for access?

Ultimately, the recommendations from CADTH are non-binding for the provinces who refer to it (majority of provinces). In Quebec, the Minister of Health still has an opportunity to ensure that the criteria are inclusive for all who could benefit.

Cystic Fibrosis Canada and CF clinicians developed a set of guidelines for modulator use in Canada. Cystic Fibrosis Canada urges all provinces to listen to the CF medical experts and list Trikafta so that everyone who can benefit has access, according to the access criteria laid out in these guidelines.

We need your help to whip up a storm!

Join our Twitter storm and help us send a whirl of messages to provincial Health Ministers to let them know now is the time to list Trikafta and to do so for everyone who can benefit. Use our simple template to set up your Tweet and direct it to the right person. Old Twitter account? No worries, brush the dust off! No account? Maybe it’s time to get one. We need your voice today!

Not on Twitter? We also have step by step instructions so that you can join the storm on your social media platform of choice. Visit our website to find out how to get involved.


And finally…

Thank you for your support and tenacity to get us to this point in our fight for access to Trikafta. Your determination to never give up is inspiring. Though we have lost too many in this long fight for access, you and the CF community have come together and moved mountains to get us steps closer to access.

Let our win on the continuation criteria for CADTH’s recommendation be a reminder that change is possible, and we won’t stop until this drug is accessible to all who could benefit from it.


Kelly Grover
President and CEO
Cystic Fibrosis Canada


P.S. Join me on Twitter now as we whip up a storm for our provincial decision makers and make sure they know #CFcantwait and we need #TrikaftaToday for all who can benefit from it!

P.P.S. Sign up for The Advocacy Brief e-newsletter today and stay informed about all advocacy related news and updates from Cystic Fibrosis Canada.