CANADIAN CYSTIC FIBROSIS TREATMENT SOCIETY
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The Canadian Cystic Fibrosis Treatment Society (CCFTS) is pleased to hear that the pan-Canadian Pharmaceutical Alliance (pCPA) has agreed to start negotiations with Vertex Pharmaceuticals for their life-sustaining cystic fibrosis (CF) medications, Orkambi and Kalydeco. With this announcement, CCFTS remains cautiously optimistic that a deal between Vertex and the pCPA will be finalized promptly in order to provide the necessary access to life-sustaining medications to thousands of vulnerable CF patients across Canada as the COVID-19 pandemic continues.
On February 26, 2020 CCFTS presented a 100-day challenge to the government of Ontario to negotiate and conclude a portfolio deal for access to life-saving cystic fibrosis medications within 100 days. Vertex accepted the 100-day challenge; Ontario Premier Doug Ford and Health Minister Christine Elliott did not.
Four months later, CCFTS is presenting a new challenge to Minister Elliott and the government of Ontario. With the pCPA announcing their intent to negotiate with Vertex for Orkambi and Kalydeco, CCFTS is calling on Premier Ford and Health Minister Elliott to insist that the pCPA negotiate in good faith and finalize a deal ensuring access to life sustaining CF medications for vulnerable CF patients on or before Labour day weekend 2020. That is prior to the start of the school year. .
Chris MacLeod, Chair of CCFTS believes that a deal between the pCPA and Vertex should not take long as there are already 20 industrialized countries in the world that have agreements with Vertex to provide Vertex’s life-sustaining CF medications. “Canadian CF patients have been waiting for over four years for public access to Orkambi and in that time, we have seen over 20 industrialized and developed countries around the world secure agreements with Vertex and provide access to this life-sustaining medication”, said MacLeod.
Canadian CF patients are currently at the greatest risk and among the most vulnerable to COVID-19. Access now to life-sustaining medications will ensure CF patients that typically occupy the majority of respiratory hospital beds are out of hospital and free up needed hospital beds for the most at risk members of the general public. Now more than ever, it is critically important to ensure Canadian CF patients receive access to Orkambi and other life-saving CF medications. They are suffering and without it their time is limited.
“I have been waiting for four years to hear that we have access. Today we only heard that the government now believes this life saving CF medication, Orkambi, merits a negotiation. Without a timeline this positive step will become an endless negotiation and many innocent lives will be lost in the interim. This deal needs to be concluded by Labour day weekend. We will be monitoring closely over the next 87 days and checking in with the pCPA and the Premiers and the Ministers of Health to ensure that this deal gets done. Access delayed is access denied,” said Haughian, mother of two boys with CF.
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