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TORONTO (June 12, 2020) – Today, Canadians with cystic fibrosis are one step closer to gaining access to a suite of life-changing treatments for cystic fibrosis as the pan-Canadian Pharmaceutical Alliance (pCPA) and the drugs’ manufacturer, Vertex Pharmaceuticals, have agreed to begin negotiations.
The medications subject to negotiations, Orkambi and Kalydeco, are known as CFTR-modulators. Rather than just treating symptoms, these drugs target the basic defect from specific mutations that cause cystic fibrosis (CF).
The newest of these types of medications, a breakthrough drug called Trikafta, has the potential to treat 90% of people living with CF. In the U.S., Trikafta was declared a breakthrough treatment last fall and was fast-tracked for approval. The European Medicines Agency is also fast-tracking Trikafta. It has not yet been submitted for approval in Canada.
While Trikafta is not presently included in pCPA negotiations, Cystic Fibrosis Canada hopes that the negotiations for Kalydeco and Orkambi will facilitate its submission by the manufacturer to the Canadian drug approval process.
“After years of pressure by the CF community and two failed attempts in 2016 and 2019 to negotiate pricing for one of these life-changing medications, we are relieved that the pCPA is doing the right thing for Canadians with cystic fibrosis,” said Kelly Grover, President & CEO, Cystic Fibrosis Canada. “People who live with CF have to literally fight for their breath on a daily basis. They should not have had to fight this hard and this long to access these life-changing medicines.”
The start of these historic pan-Canadian pricing negotiations is a positive step in the complex process of securing access to critical new medications for Canadians who have cystic fibrosis. In order to start negotiations for Trikafta, the manufacturer needs to submit it to Health Canada for approval, followed by a health technology assessment, a pricing assessment by the Patented Medicine Prices Review Board (PMPRB) and subsequent negotiations through the pCPA to actually list the medication on provincial, territorial and federal drug formularies. Drugs like Trikafta may take some time to clear these public reimbursement hurdles. They cost hundreds of thousands of dollars per year; without reimbursement, they are entirely out of reach for Canadian families.
“There is no time to lose on this, we’ve already waited far too long” said John Wallenburg, Chief Scientific Officer at Cystic Fibrosis Canada. “We are grateful that Vertex and the pCPA have agreed to come together. Now, we urge them and the other players in Canada’s complex drug regulatory and reimbursement to work quickly, collaboratively and creatively to get these game-changing medicines to the people who need them.”
“Canadians with fatal diseases like CF have waited long enough. People with cystic fibrosis in other countries are getting medicines they need while Canadians suffer and die. All Canadian governments need to do better,” said Melissa Verleg, a B.C. resident who lives with cystic fibrosis. Three months ago, Verleg was in hospital with just 18% lung function, waiting for a lung transplant and having end-of-life discussions with her children after she lost private drug coverage of the medication that had been keeping her alive. She was given special access to Trikafta two months ago, and is now home and breathing well. Recently, she took an hours-long mountain hike with her family, something that would have been unthinkable in March.
Cystic Fibrosis Canada, together with the CF community, will continue to work with drug manufacturers and all levels of government to achieve access to every treatment that is proven to improve and lengthen the lives of people with cystic fibrosis.
About the pan-Canadian Pharmaceutical Alliance (pCPA)
The pCPA is an alliance of the provincial, territorial and federal governments that collaborates on a range of public drug plan initiatives to increase and manage access to clinically effective and affordable drug treatments. One of pCPA’s key roles is to conduct joint negotiations for brand name and generic drugs in Canada in order to achieve greater value for publicly funded drug programs and patients through its combined negotiating power.
About Cystic Fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting approximately 4,370 Canadian children and young adults. It is a multi-system progressive disease that affects mainly the lungs and the digestive system. In the lungs, where the effects are most devastating, a build-up of thick mucus leads to progressive loss of respiratory function. Mucus also builds up in the digestive tract, making it difficult to digest and absorb nutrients from food. As improved therapies have helped to address the malnutrition issues, ultimately most deaths related to cystic fibrosis are due to lung failure. There is no cure.
Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world’s leading charitable organizations committed to finding a cure for cystic fibrosis and is an internationally-recognized leader in funding CF research, innovation, and clinical care. We invest more funding in life-saving CF research and care than any other non-governmental agency in Canada. Since 1960, Cystic Fibrosis Canada has invested more than $261 million in leading research, care and advocacy, resulting in one of the world’s highest estimated median age of survival for Canadians living with cystic fibrosis. For more information, visit cysticfibrosis.ca.
For more information, please contact:
Kenya Francis, Associate, Corporate Communications
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 203
Tel: 1-800-378-2233 ext. 203