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NIHB AND NORTHWEST TERRITORIES EXPAND ACCESS TO TRIKAFTA, ENSURES LIFE CHANGING DRUG IS ACCESSIBLE TO THOSE WHO NEED IT

August 3, 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 3, 2022 – The Northwest Territories (NWT) and Non-Insured Health Benefits (NIHB) have completed an agreement with the manufacturer of Trikafta to fund the revolutionary cystic fibrosis (CF) drug for people aged six years and older, effective July 29, 2022. The NIHB provides eligible First Nations and Inuit clients with coverage for a range of health benefits that are not covered through other social programs, private insurance plans or provincial or territorial health insurance.The Northwest Territories and NIHB are the latest Canadian public drug programs to fund the medication for children and adults aged six and older with at least one F508del gene mutation. Ontario, Alberta, Nova Scotia and Saskatchewan previously announced expanded access to Trikafta. The NWT and NIHB has also removed the restrictive start criterion 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 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 eligible children who live with cystic fibrosis,” said Dr. John Wallenburg, Chief Scientific Officer, Cystic Fibrosis Canada. “We are hopeful that this decision will pave the way for access in Nunavut, whose drug program generally mirror that of the NIHB. 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 NIHB, Saskatchewan, Nova Scotia, Alberta and Ontario’s lead 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. 

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 EDT 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: (226) 899-1363 
Email: moskam@cysticfibrosis.ca 
Magdelena Oskam, Coordinator, Marketing and Communications 


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