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Open letter from CF clinicians calling upon provincial governments to make Trikafta accessible to everyone who could benefit from it

October 1, 2021

Over 50 CF clinicians from across Canada have added their names to the open letter to provincial governments calling for access to Trikafta for everyone would could benefit from it. They are asking provincial Health Ministers to immediately fund Trikafta for all who could benefit and to empower CF physicians to manage their patients’ access based on the evidence based clinical guidelines they have developed.

Dear Ministers of Health,

We are writing to you today regarding the recent CADTH recommendations for Trikafta, an innovative medication that has revolutionized the treatment of cystic fibrosis (CF). If followed, CADTH’s recommendation will limit access to Trikafta to only those patients with lung function of ≤90%. We strongly disagree with this opinion and are writing to provide you with an alternate recommendation from the physicians, researchers and health care professionals who specialize in cystic fibrosis.

We have detailed why we disagree with this eligibility criteria in recent correspondence to you, which can be found here, but the most important thing for you to know is that one in four Canadians who could benefit from Trikafta will not have access to it if you choose to accept the access criteria recommendations from CADTH.

The CADTH recommendation ignores the real-world clinical evidence that Trikafta improves lung function for patients with greater than 90% lung functions. Waiting until a patient has less than 90% lung function means allowing structural and irreversible lung damage to accumulate before treatment can begin. The best treatment for CF is preventing the disease from progressing. That is why your province has implemented newborn screening for CF and why treatment starts immediately on diagnosis. That is why, with only one exception, no other jurisdiction in the world has imposed this barrier to access.

This threshold also unjustly discriminates against adolescents and children with CF. Many teens with CF and three quarters of 6-11 yr-olds with CF have lung function above the 90% threshold, but still have to suffer with progressive lung damage, infections, hospitalizations, and complex daily treatment regimens.

It is not an exaggeration to say that the impact of this new therapy, Trikafta, is dramatic. A study, led by researchers at Dalhousie University, The Hospital for Sick Children (SickKids) and St Michael’s Hospital, demonstrated that early introduction of Trikafta in 2021 would result in life-changing health improvements by 2030 in comparison to no drug available, including:

• 15% fewer deaths
• Increase in estimated median age of survival by 9.2 years
• 60% fewer people living with severe lung disease due to cystic fibrosis, and
• 18% increase in people living with only mild lung disease
• 19% fewer hospitalizations or home intravenous courses for chest infections

A reduction in the number of transplants that are required for severe lung diseaseAs you know, the CADTH recommendation is not binding on any government. You can make Trikafta available to every Canadian in your province who can benefit from this drug.

In its final recommendation, CADTH recommends “(p)rescribing of ELX-TEZ-IVA [, or Trikafta,] and monitoring of treatment response should be limited to CF specialists.” We sincerely recommend that you extend that trust of CF specialists to the proper initiation and coverage criteria as well. We, Canada’s cystic fibrosis medical experts, are sharing with you our recommendations on the appropriate use of Trikafta. We recommend that you immediately fund Trikafta for all who could benefit and that you empower your CF physicians to manage their patients’ access based on the evidence based clinical guidelines they have developed.

Ministers, time is of the essence. With every day that passes, the health of many of our patients who could benefit from this drug worsens. We ask that you give us the tools we need to save lives and improve the lives of thousands of Canadians. Because CF can’t wait.

Yours sincerely,