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INESSS, QUEBEC’S COST EFFECTIVENESS REVIEW BODY, RELEASED A POSITIVE RECOMMENDATION TO FUND TRIKAFTA 6+

August 5, 2022

Cystic Fibrosis Canada is calling on Quebec Health Minister to fund Trikafta now.  

MONTREAL, August 5, 2022 – Today, the Institut national d’excellence en santé et en services sociaux (INESSS), Quebec’s cost effectiveness review body, released a positive recommendation to fund Trikafta for Quebecers with CF aged 6 and older. The review body also recommended to  remove the restrictive start criterion implemented for access to the 12 and older age group in 2021. Cystic Fibrosis Canada is calling on the Quebec Minister of Health to fund Trikafta for 6+ now, without delay.  

Quebec was one of the first provinces to fund the drug for those 12 years of age and older in 2021, but at the time, the province implemented the overly restrictive start criterion, that required a person to have 90% or less FEV1, a measure of lung function, which left approximately 25% of the CF population potentially without access. Today, INESSS recognizes Trikafta’s transformative value by recommending expansion of coverage to include children aged six – 11 years old and removing the restrictive start criteria, paving the way for children and more adults to access the drug.  

Trikafta is considered the single greatest innovation in the history of cystic fibrosis. It can treat up to 90% of Canadians with cystic fibrosis and addresses the underlying causes of the disease instead of just managing the symptoms, potentially preventing irreversible damage caused by this progressive disease.   

Children with CF, and many adults, are now one step closer to accessing this life-changing drug. This will potentially change the trajectory of the disease, and the future, for many people in Quebec who live with cystic fibrosis” said Kim Steele, Director, Government and Community Relations.  “Now, we call on the province health minister to move swiftly to cover this drug for those aged six and older 

Health Canada approved Trikafta for use in the six to 11 age group in April 2022. In October 2021, Canada’s cost effectiveness review bodies granted an aligned review of Trikafta, allowing the Canadian Agency for Drugs and Technologies in Health (CADTH) and INESSS to conduct their respective reviews during the Health Canada priority review period. INESSS issued its final positive recommendation for Trikafta 6+ on August 5, 2022. This new recommendation from INESSS supersedes the recommendation issued in 2021 for the 12 and older age group, which included a recommendation to implement a restrictive start criterion of a lung function measurement of 90% or less.  

“This recommendation from INESSS is a real relief. A huge weight is about to fall off our shoulders and I can't wait for my son to finally have access to Trikafta. Soon, many parents, children and adolescents living with cystic fibrosis will be able to breathe easier and see a better future. Trikafta must be reimbursed by the RAMQ now". Cindy Lessard, mother of 6-year-old Derek who is living with CF. 

For CF advocacy news, subscribe to Cystic Fibrosis Canada’s advocacy e-newsletter "The Advocacy Brief". 

Members of the community and supporters are invited to join Cystic Fibrosis Canada’s #TrikaftaToday briefing on Wednesday, August 10 at 1pm EST to discuss the most recent updates related to accessing Trikafta in Canada. Follow this link to register for the briefing.

About cystic fibrosis  

Cystic fibrosis is the most common fatal genetic disease affecting 4,332 Canadian children and young adults. There is no cure. Of the Canadians with cystic fibrosis who died in the past five years, half were under the age of 37. Cystic fibrosis is a progressive, degenerative multi-system disease that affects mainly the lungs and digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus causes severe respiratory problems. Mucus and protein also build up in the digestive tract, making it difficult to digest and absorb nutrients from food. In addition to the physical effects of the disease, mental health concerns are emerging; anxiety and depression are common among this population. Double lung transplants are the final option for patients with end-stage disease; most fatalities of people with CF are due to lung disease.  

About Cystic Fibrosis Canada  

Cystic Fibrosis Canada has dramatically changed the cystic fibrosis story. We have advanced research and care that has more than doubled life expectancy. Since being founded by parents in 1960, Cystic Fibrosis Canada has grown into a leading organization with a central role engaging people living with cystic fibrosis, parents and caregivers, volunteers, researchers and healthcare professionals, government and donors. We work together to change lives for the 4,332 Canadian children and adults living with cystic fibrosis through treatments, research, information and support. Despite our remarkable progress together, we are not yet done. Not when half of the Canadians with cystic fibrosis who died in the past three years were under the age of 34. We will keep pushing, keep going further until all people with cystic fibrosis can and do experience everything life has to offer —and enjoy everything life has to offer. Learn more at cysticfibrosis.ca.  

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For more information:  

Magdelena Oskam, Coordinator, Marketing and Communications  

Tel: (226) 899-1363 

Email: moskam@cysticfibrosis.ca 


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