Thursday, July 26, 2012 (Toronto, ON) — Cystic Fibrosis Canada, Canada’s leading advocate for Canadians with cystic fibrosis, urges Canada’s Premiers to engage in serious discussion about the benefits of newborn screening as they meet at the Council of the Federation (COF) over the next two days.
“We call on Premiers in Quebec, Nova Scotia, New Brunswick, Newfoundland and Labrador, and Prince Edward Island to ask their colleagues west of Quebec about how the quality of life of Canadian children with cystic fibrosis has improved with earlier diagnosis,” said Ken Chan, Vice President, Advocacy, Research, and Healthcare at Cystic Fibrosis Canada. “Families in these provinces have a right to know why they still have no access to CF testing in newborn screening programs.”
Newborn screening for cystic fibrosis is now the standard of care in all 50 States in the U.S., Australia, New Zealand, the U.K. and much of the European Union. Yet access to CF newborn screening in Canada is inequitable across the provinces. Currently, British Columbia, Alberta, Saskatchewan, Manitoba and Ontario screen newborns for cystic fibrosis. Families in Quebec and the Atlantic provinces have no access to early detection for this devastating disease.
“If Newfoundland and Labrador had CF newborn screening, my young son would have been diagnosed right away and his treatment could have started immediately,” said John Bennett, Regional Director, at Cystic Fibrosis Canada’s Newfoundland and Labrador Chapter. “Instead, my family endured countless doctors’ visits, suffered from anxiety, hopelessness and fear because doctors could not determine the reason for his lack of weight gain. I strongly urge the five provinces that do not have CF newborn screening to join their provincial counterparts and show leadership and care in helping to combat this fatal disease.”
Early diagnosis of cystic fibrosis through newborn screening provides identified infants with a better start in life. Without CF newborn screening, irreversible lung damage, impediment to physical growth and digestive problems may have already occurred when the child is finally diagnosed. To slow progression of the disease, early intervention is critical.
Screening means that babies with cystic fibrosis can be treated early with diet, medications and physiotherapy. The goal is to help people with cystic fibrosis live longer, healthier lives.
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 and protein also build 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. Currently, 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 $140 million in leading research and care, resulting in one of the world’s highest survival rates for Canadians living with cystic fibrosis.
For more information, please visit:
Cystic Fibrosis Canada’s website www.cysticfibrosis.ca
Cystic Fibrosis Canada on Facebook at www.facebook.com/CysticFibrosisCanada
Cystic Fibrosis Canada on Twitter at www.twitter.com/CFCanada
Melinda McInnes, Cystic Fibrosis Canada
Program Director, Public Relations and Advocacy
Tel: 416-485-9149 ext. 240 | 1-800-378-2233 ext. 240