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Canadians anxiously waiting for vaccines are experiencing a similar struggle to that faced by the CF community
As many in this country face a painful wait for COVID-19 vaccines that could save their lives, they are experiencing the reality of what Canadians living with cystic fibrosis (CF) have endured for years. May is Cystic Fibrosis Awareness Month and Cystic Fibrosis Canada is working to urgently get access to transformative cystic fibrosis drugs that are available around the world, but not in Canada. Cystic Fibrosis Canada is calling on provincial governments to make life-saving CF drugs available to everyone who needs them now.
Canadians living with cystic fibrosis have waited too long for drugs that can lead to healthier and longer lives. Provincial governments have the decision-making power to fund cystic fibrosis drugs and yet CFdrugs, Orkambi and Kalydeco, have been sitting with governments for years. All while Canadians with CF have become sicker without access and sadly, some have died. The ‘miracle drug’ Trikafta, the single greatest innovation in the history of the disease, treating up to 90% of the CF population, could soon be tied up in the same red tape.
With critical decisions expected from government bodies in June 2021 that will impact access to Trikafta in Canada, Cystic Fibrosis Canada is asking Canadians to join the CF community and demand that provincial governments make these drugs available for everyone who needs them. Canadians are urged to sign the #CFcantwait petition and tell their province to end the wait. Cystic Fibrosis Canada and its volunteers have also launched a #CFcantwait Provincial Meeting Challenge, with the aim of meeting with as many provincial elected officials as possible across Canada throughout April to June 2021, imploring them to take action as part of the fight for access to the medications.
“In a country that prides itself on healthcare, Canadians should not have to put their lives on the line because life saving drugs, that are available next door and around the world, aren’t accessible here,” says Kelly Grover, President and CEO of Cystic Fibrosis Canada. “It is unacceptable to make Canadians with CF, who already carry such a heavy health burden, wait endlessly. We ask that provincial elected officials help us get Trikafta and other CF modulator drugs into Canadian hands immediately upon Health Canada approval.”
Life-changing CF drugs are available in other countries around the world, but not here in Canada. Trikafta was fast-tracked for access by the U.S Federal Drug Agency (FDA) and the European Medicines Agency (EMA). To date Trikafta has received regulatory approval in 35 countries. A true game-changer, England’s National Health Service agreed to fund Trikafta before regulatory approval.
“As parents that’d been dreading the early death of a child, Trikafta was the miracle treatment our eldest son needed - but he had to move to the U.S. to access it,” says Chris Bushell, father of two children born with CF. “Now our family is divided, living between two countries. We’d have to uproot our youngest son and also find a way to relocate to the USA to get him Trikafta. Canada is a G7 nation, but we’re letting people degrade and die when they’re being saved in 35 other countries.”
Canadian research released in August 2020 demonstrates that if Trikafta was brought to Canada now, as it has been in the United States, the United Kingdom and parts of Europe already, it could result in extraordinary health benefits by 2030, including 15% fewer deaths, 60% fewer people living with severe lung disease and an increased estimated median age of survival for a child born with cystic fibrosis of 9.2 years.
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.
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. Learn more at www.cysticfibrosis.ca