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PRINCE EDWARD ISLAND EXPANDS ACCESS TO TRIKAFTA, ENSURES LIFE CHANGING DRUG IS ACCESSIBLE TO THOSE WHO NEED IT

August 10, 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

TORONTO, August 10, 2022 – Prince Edward Island has announced that effective August 8, 2022, the province has expanded access to the revolutionary cystic fibrosis (CF) drug, Trikafta. Prince Edward Island 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, the Northwest Territories and the Non-Insured Health Benefits (NIHB) previously announced expanded access to Trikafta. The province has also removed the restrictive start criterion around lung function implemented for access to the 12 and older age group in 2021. Cystic Fibrosis Canada urges the remaining provinces and territories who have not yet followed CADTH's recent recommendation to provide Trikafta, to immediately fund Trikafta for all who can benefit.

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.

“This is a day that our community has fought long and hard for. Today’s news will change the trajectory of the disease, and the future, for many children and adults in Prince Edward Island 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 CADTH’s new guidance.”

Health Canada approved Trikafta for use in the six to 11 age group in April 2022 and on July 6, 2022, CADTH issued a positive recommendation to fund the drug. This new recommendation from CADTH 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.

Cystic Fibrosis Canada now calls on all other provinces and territories to follow the lead of , PEI, Saskatchewan, the Northwest Territories and the Non-Insured Health Benefits (NIHB) and 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.

“This is incredible news for families impacted by cystic fibrosis on Prince Edward Island,” said Hunter Guindon, an adult who lives with cystic fibrosis on the island. “This will change lives and change what it means to be diagnosed with this disease. Children who are now eligible for Trikafta may not suffer the same effects of cystic fibrosis that I have lived with my entire life.”

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 2pm ADT 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:

Tel: (905) 317-5529

Email: nyoung@cysticfibrosis.ca

Nicole Young, Director, Marketing and Communications


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