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The Advocacy Brief Special Bulletin: CADTH shares its final recommendation to list Trikafta

Today, the Canadian Agency for Drugs and Technologies in Health (CADTH) shared its final recommendation regarding the funding of Trikafta. The agency, responsible for cost effectiveness reviews of new medicines, has confirmed its recommendation to list Trikafta and improved some of the criteria from the draft recommendation   

What’s changed in the final recommendation? 

In a rare move,  CADTH made changes to its draft recommendation. Changes that reflect the criteria that Cystic Fibrosis Canada and our community fought for.  CADTH’s recommendation for continuation at renewal is now more inclusive and reflective of the nature of cystic fibrosis.  

Instead of limiting continued access to only those who demonstrate a 5% increase in lung function, which is also maintained over time, CADTH’s final access criteria now recognizes the many ways Trikafta can make a difference for people living with cystic fibrosis. Individuals on Trikafta who demonstrate  any one of five possible benefits after six months would qualify for continued coverage.  These five criteria are:  

  • a 5% increase in lung function or  
  • a reduction in the number of days for which the patient received antibiotics for exacerbations OR a decrease in the total number of exacerbations requiring antibiotics or 
  • a decrease in the frequency of CF related hospitalizations or 
  • no decline in BMI or 
  • an improvement in quality of life as measured by the CFQ-R questionnaire 

While access must be reviewed annually, it is up to cystic fibrosis physicians to provide evidence that an individual continues to benefit from Trikafta. These changes will help more people who access the drug through public funding  maintain their coverage.  

Thank you to everyone who helped to fight for this change. CADTH rarely make changes to their draft recommendations and it is a testimony to the determination of the CF community that they have listened. 

What isn’t working? 

Cystic Fibrosis Canada is very disappointed to see the narrow prescribing criteria remained in the final document. CADTH has continued to recommend that only people with a lung function below 90% be granted access to Trikafta through public funding. If implemented by the provinces, this would restrict access for 27% of eligible Canadians, primarily children and youth. This is unacceptable. 

Cystic Fibrosis Canada and clinicians across the country have been speaking out against this criterion since the draft recommendation was shared in July. It goes against the core principle for treating this multi-organ disease – preventing progression is key. It’s also an anomaly: with only one exception, no other jurisdiction in the world has this limitation to access. This limitation will cause further issues when access is expanded to include younger children, who will largely have higher lung functionality.  

Cystic Fibrosis Canada will continue to fight until everyone who can benefit from this transformational drug has access.  

Where does Cystic Fibrosis Canada stand on the final recommendation? 

We are encouraged by CADTH’s movement on the continuation criteria and pleased that they are recommending reimbursement, but we also are very disappointed with the narrow access criteria. However, ultimately, the recommendations from CADTH are non-binding for the provinces. Cystic Fibrosis Canada and CF clinicians developed a set of guidelines for modulator use in Canada. Cystic Fibrosis Canada urges the provinces to listen to the CF experts and list Trikafta according to the access criteria laid out in these guidelines.  

What’s next? 

This milestone marks one of the last pieces of red tape before provinces will begin to fund the drug.  

At the provincial level, the pan Canadian Pharmaceutical Alliance announced in June that Trikafta could be added to the existing deal for Orkambi and Kalydeco once the CADTH and INESSS reviews were complete. We are hoping this will be confirmed shortly.  

Cystic Fibrosis Canada is calling upon the provinces to immediately list Trikafta on their public drug programs for everyone who could benefit. As the recommendations from CADTH are non-binding, Cystic Fibrosis Canada is working to make sure every provincial Health Minister is aware of this. We are urging Health Ministers to listen to the advice of CF clinicians and follow the guidelines for modulator use in Canada as the basis for access.  

The pressure from meetings held by Cystic Fibrosis Canada and our team of volunteer advocates, the media articles, social media stories and letters sent will work to ensure that politicians are aware of the impact that the restrictive criterion could have on their constituents living with CF. 

Help us 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. 

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. 

Join our Facebook Live 

We’re going live on our Facebook Page, Friday 17 September at 3pm EST. Join us to discuss what this final recommendation from CADTH means for access to Trikafta and what are the next steps you can take to push for access for everyone who could benefit.  

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