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QUEBEC EXPANDS ACCESS TO TRIKAFTA, ENSURES LIFE CHANGING DRUG IS ACCESSIBLE TO THOSE WHO NEED IT

August 16, 2022

Cystic Fibrosis Canada calls on remaining provinces and territories to fund Trikafta for children six and up and lift any overly-restrictive access criteria

MONTREAL, August 16, 2022 – Quebec has announced that the province has expanded access to the revolutionary cystic fibrosis (CF) drug, Trikafta to those who are 6-11 years of age. The province also removed the restrictive start criterion around lung function that was required for access to the 12+ age group in 2021. These new criteria are effective as of August 15 and the Régie de l'assurance maladie du Québec (RAMQ) public listing and hospitals listings will be updated on August 17. Given the structure of the drug system in the province, this also means that private insurers in Quebec must reimburse Trikafta using the same criteria.

Quebec is the latest Canadian jurisdiction to fund the drug for children and adults aged six and older with at least one F508del gene mutation. Ontario, Alberta, Nova Scotia, Saskatchewan, Northwest Territories, Prince Edward Island, New Brunswick and the federal Non-Insured Health Benefits previously announced expanded access to Trikafta. Cystic Fibrosis Canada urges the remaining provinces and territories to immediately fund Trikafta for all who can benefit.

“This is a day that our Quebec community has fought long and hard for. Today’s news will change the trajectory of the disease, and the future, for many children in Quebec who live with cystic fibrosis,” said Dr. John Wallenburg, Chief Scientific Officer, Cystic Fibrosis Canada.  “Now, we call on the remaining provinces and territories to move swiftly to cover this drug for those aged six and older and for other jurisdictions that have implemented restrictive start criterion, to fund the drug under INESSS’s and CADTH’s new guidance.”

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 recommended by the Institut national d’excellence en santé et en services sociaux (INESSS), of 90% or less FEV1, a measure of lung function, which left approximately 25% of the CF population without access. Today, the province recognizes Trikafta’s transformative value. This new recommendation from INESSS supersedes the recommendation issued in 2021 for the 12 and older age group and removes the restrictive start criterion.

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. 

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.

"The last few weeks waiting for Trikafta to finally be available to my son have been very long. But finally, it's a relief and a huge weight has been lifted off our shoulders. Many parents, children and teenagers living with cystic fibrosis will finally be able to breathe and see a better future.” Cindy Lessard, mother of six-year-old Derek who lives with CF.

Cystic Fibrosis Canada now calls on all other remaining provinces and territories to quickly fund Trikafta under their respective drug programs using CADTH’s new recommendation and Cystic Fibrosis Canada’s clinician-developed guidelines for access and continuation. This drug should be accessible for all who could benefit from it.

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 24 at 1pm ESTto 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:

Cateryne Rhéaume, National Bilingual Communications and Marketing Associate

Tel: (438) 868-4451

Email: crheaume@fibrosekystique.ca


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