Cystic Fibrosis Canada asks for more than hope
May 2, 2018 (TORONTO) – Cystic Fibrosis Canada (CF Canada) is launching a national campaign this May, Cystic Fibrosis Awareness Month, to call on the government to make life-changing medications accessible for those who need it. Currently, a life-changing medication called Orkambi has the potential to benefit 2,100 of the 4,200 Canadians who live with cystic fibrosis (CF). Unfortunately, without public funding, many people with CF cannot access it despite its approval by Health Canada and doctors prescribing it.
“Cystic fibrosis is a progressive, fatal disease. People with CF don't have time to wait,” says Dr. John Wallenburg, Chief Scientific Officer at Cystic Fibrosis Canada. “Our governments need to step up and help these people now. Those with cystic fibrosis need to rely on more than their hope, they need be able to rely on their governments to make decisions that will help them live longer, healthier lives.”
Orkambi can be prescribed for people with CF who have the most common genetic mutation. Since it treats the basic defect, as opposed to treating symptoms, its benefits can be dramatic in those who respond to it well. Orkambi does not equally benefit everyone who takes it, but for those who it does benefit, it can absolutely be life-changing.
The national campaign, Let’s Hope, features Canadians with cystic fibrosis sharing their hopes and fears, and calls on Canadians to give more than hope and support the mission of ending cystic fibrosis. Cystic Fibrosis Canada aims to show the government that Canadians support access to medication for people with CF. Canadians can also support the cause at their local Walk to Make Cystic Fibrosis History on Sunday, May 27, 2018.
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Cystic fibrosis
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. It is a multi-system 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 causes severe respiratory problems. 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 disease. There is no cure.
Cystic Fibrosis Canada
Cystic Fibrosis Canada is one of the world’s top three 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 $253 million in leading research, care and advocacy, resulting in one of the world’s highest survival rates for Canadians living with cystic fibrosis. For more information, visit cysticfibrosis.ca.
For media requests or more information, contact:
Jennifer Stranges, Associate, Corporate Communications
Cystic Fibrosis Canada
jstranges@cysticfibrosis.ca
Tel: 1-800-378-2233 ext. 290
