NEWFOUNDLAND AND LABRADOR HONOURS COMMITMENT TO FUND CYSTIC FIBROSIS DRUG TRIKAFTA
TORONTO, October 20, 2021– Newfoundland and Labrador announced today that it will fund the transformational cystic fibrosis drug, Trikafta starting in November. Newfoundland and Labrador is the final Atlantic province to change the lives of residents impacted by cystic fibrosis, by committing to list Trikafta. The province has followed through on a commitment made in December 2020 to bring this drug to those who need itfollowing a positive review process.
The province has announced that it is expediting the listing process so that patients with cystic fibrosis can have access to this drug under the Newfoundland and Labrador Prescription Drug Program in November 2021. The announcement did not indicate 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 incredible news for the CF population in Newfoundland and Labrador,” said Kelly Grover, President and CEO, Cystic Fibrosis Canada. “We are so pleased that the government of Newfoundland and Labrador has honoured its commitment from 2020 and will fund the drug. We are asking the remaining jurisdictions of Manitoba, the Northwest Territories and Nunavut as well as federal drug funding programs to fund the drug for all those who can benefit now.”
One province, two territories and federal drug funding programs have not yet committed to listing Trikafta. While there has been good momentum in Manitoba towards funding the drug, CF can’t wait. Cystic Fibrosis Canada is calling on Manitoba, 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.
“This is truly a life changing day for people impacted by cystic fibrosis in Newfoundland and Labrador,” said John Bennett, a CF dad and lead advocate for Newfoundland and Labrador. “My son is 11 and while he can’t access Trikafta right now, the relief I feel knowing it will be available when he needs it, is hard to put into words. Today, I am thinking of those who needed the drug yesterday and those who need it today, whose lives will immediately change for the better. I have immense gratitude for the entire Newfoundland and Labrador community who stood united on this issue, and the government of Newfoundland and Labrador, for making this commitment to improve the lives of residents with cystic fibrosis.”
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'excellence en santé 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 on October 21, 2021 at 5pm EDT/6pm ADT/6:30pm NDT on Cystic Fibrosis Canada Facebook page to discuss the news from Newfoundland and Labrador 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, Communication and Marketing
Tel: (905) 317-5529
Email: nyoung@cysticfibrosis.ca
