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Cystic Fibrosis Canada calls on government to remove barriers preventing drug’s arrival to Canada
TORONTO, August 24, 2020 - Cystic Fibrosis Canada is imploring the government to take action given new research published today that demonstrates that access to the cystic fibrosis (CF) drug Trikafta in 2021 would result in profound health improvements for people living with cystic fibrosis who take the drug. By 2030 Trikafta could reduce the number of people living with severe lung disease by 60% and reduce the number of deaths by 15%.
With the potential to treat 90% of people living with cystic fibrosis, Trikafta is a breakthrough drug that was fast-tracked for access by the U.S. Federal Drug Agency and the European Medicines Agency. It is already available in the United States and is expected to be publicly available in Ireland, England, Wales and Scotland soon, with other European countries not far behind. Meanwhile, Canadians wait for access.
Published today, by a Canadian research team from Dalhousie University, the Hospital for Sick Children (SickKids) and St Michael’s Hospital, the study analyzes three scenarios, including: the impact on the health of people with cystic fibrosis in the year 2030 if they received Trikafta in 2021; if Trikafta is delayed until 2025; and, if it doesn’t become available in Canada at all. The results show that early introduction of Trikafta would result in life-changing health improvements by 2030 in comparison to no drug available, including:
“These results are remarkable. They validate the transformational impact that this drug would have in Canada and underscore that time is of the essence ,” says Dr. Anne Stephenson, senior author of the study. “The study also illustrates that delays in access to Trikafta will come at a significant cost, in terms of health outcomes, health care costs and ultimately lost lives.”
Cystic Fibrosis Canada and the cystic fibrosis community have been strongly advocating for changes to various legislation that impede innovative drugs like Trikafta from coming to Canada. The Patented Medicine Prices Review Board (PMPRB) draft guidelines that were released in July are one key barrier that is making Canada a less desirable place for drug manufacturers to bring their drugs. Cystic Fibrosis Canada recently provided recommendations to the PMPRB including a pathway forward for Trikafta.
“This drug is drastically improving and saving lives around the world, and yet in Canada, a country that prides itself on its medical care, people living with cystic fibrosis are on the sidelines waiting and paying grave consequences,” said Kelly Grover, President of Cystic Fibrosis Canada. “Canadians with CF need access now. Politics and bad public policy should not be the reason that innovative life saving drugs are out of reach for Canadians.”
“Having access to Trikafta would give me the opportunity to live out my purpose and full potential with a high quality of life,” said Hailey Laxer, a Toronto-based woman living with cystic fibrosis. “Trikafta would mean that I could spend less time in the hospital fighting frequent lung infections, and more time leading a healthy and fulfilling life. The Canadian drug system is failing people living with cystic fibrosis. The reality is, while we wait for the government to do the right thing, people in the cystic fibrosis community are getting progressively sicker and dying. This is tragic, unacceptable, and preventable.”
The study, led by Dr. Sanja Stanojevic at Dalhousie University, was initiated following the publication of remarkable results of clinical trials for Trikafta in November 2019 and the US FDA’s approval of the drug in October 2019. Using data from CF Canada’s registry, the intent of the study was to predict the impact that access to Trikafta would have on the cystic fibrosis population in the future and the impact of delayed access to this life-changing drug. Cystic Fibrosis Canada was a primary funder of the study.
Take action today
With this new evidence in hand, Cystic Fibrosis Canada implores all levels of government to work with all relevant bodies to expedite Trikafta’s immediate entry into Canada and public access nationwide. Today we are asking the community to join us as we publicly and loudly question: Canada, what are you waiting for? As a first step, please use our quick and easy digital template to send a letter to your MP and urge those around you to do the same.
About Cystic Fibrosis
Cystic fibrosis is one of the most common fatal genetic diseases affecting Canadian children and young adults. There is no cure. Of the Canadians with CF who died in 2018, half were under the age of 33. 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 and being addressed as 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.
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 Cystic Fibrosis 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:
Jennifer Ouellette, Manager
Cystic Fibrosis Canada
Kenya Francis, Associate
Cystic Fibrosis Canada
Tel: 416-485-9149 ext. 203
Tel: 1-800-378-2233 ext. 203