MANITOBA BECOMES FINAL PROVINCE TO COMMIT TO LIST LIFE CHANGING CYTIC FIBROSIS DRUG
TORONTO, October 22, 2021 – Today, Manitoba announced that it will fund Trikafta, the transformational cystic fibrosis drug. Trikafta will be available for Manitoba residents who meet the provincial eligibility criteria. Cystic Fibrosis Canada is seeking details regarding when and how residents will be able to access the drug. Manitoba is the final province to commit to funding the drug, with coverage spanning across all 10-provinces and the Yukon. The Northwest Territories and Nunavut are the final jurisdictions in Canada that have not yet committed to funding the drug.
The announcement indicated that the drug would be available to those who meet eligibility requirements, but it was not clear what those requirements are, or if cystic fibrosis physicians will be empowered to prescribe Trikafta to anyone who falls under Health Canada’s indication, as is the case in Alberta and Saskatchewan, or if the province will follow the CADTH recommendation. The announcements from Ontario and Quebec indicate they are following CADTH’s recommendation and that those who do not meet the narrow criteria may work with their clinician to be considered for funding on a case-by-case basis.
“This is an incredible milestone, one that our CF community has worked very hard for. With Manitoba’s announcement today, all 10 provinces and one territory will fund Trikafta,” said Kelly Grover, President and CEO, Cystic Fibrosis Canada. “We know that today is just one piece of the puzzle, and that it will still take time for those who need Trikafta, to access it, but we are hopeful that the process will continue to move quickly. We are also urging the Northwest Territories, Nunavut as well as federal drug programs to follow the lead of the jurisdictions that are funding this drug and make the life-changing decision to help Canadians with cystic fibrosis.”
Two territories and federal drug funding programs have not yet committed to listing Trikafta. Cystic Fibrosis Canada is calling on the Northwest Territories, Nunavut and the Non-Insured Health Benefits (NIHB) Program to immediately fund the drug under public drug programs using Health Canada’s indications and Cystic Fibrosis Canada’s clinician-developed guidelines for access and continuation. We urge all remaining jurisdictions to ensure swift and broad access for all who could benefit from the drug as recommended by their physician.
“Today we are celebrating an amazing accomplishment! It is the product of years of passion and commitment by so very many people,” said Patti Tweed, lead Cystic Fibrosis Canada Provincial Advocate for Manitoba. “We in the cystic fibrosis community have consistently disrupted the status quo - slowly but surely moving the needle from “sick care” towards “well care”, not just for our own families, but so that other rare disease communities may not have to fight this hard and this long in the future to embrace the benefits of 21st century innovative medicines.”
In June 2021,Health Canada approved the use of Trikafta for people with cystic fibrosis over the age of 12 with at least one F508del mutation, the most common CF-causing mutation. However, the Canadian Agency for Drugs and Technologies in Health (CADTH) later provided narrower guidance on who could be eligible for Trikafta. L’Institut national d'excellenceensanté et services sociaux (INESSS) in Quebec made a similar recommendation to CADTH. With one exception, no other jurisdiction in the world has imposed this condition. Fortunately, the recommendations are non-binding; provinces and territories have the power to change the trajectory of this disease and prevent needless suffering and irreparable damage.
Members of the community and supporters are invited to join a Facebook Live today, Friday, October 22 at 5 pm CT/ 6pm ET on the Cystic Fibrosis Canada Facebook page to discuss the news from Manitoba as well as the ways we are working to get the remaining jurisdictions to fund Trikafta.
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About cystic fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting 4,344 Canadian children and young adults. There is no cure. Of the Canadians with cystic fibrosis who died in the past three years, half were under the age of 34. 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 4,344 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.
For more information or to speak to a community member or clinician for a reaction, please contact:
Cateryne Rhéaume, National Bilingual Communications and Marketing Associate
Tel: 438 868-4451
Email: crheaume@fibrosekystique.ca
Nicole Young, Director
Tel: (905) 317-5529
Email: nyoung@cysticfibrosis.ca
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