Newborn screening for cystic fibrosis in Nova Scotia

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To the editor,

Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. One in 25 people carries a defective version of the gene responsible for CF. Between 2007 and 2011, 47 new patients were diagnosed with cystic fibrosis in Atlantic Canada. Of those new patients, only 34 per cent were diagnosed by six months of age. CF patients receive care through one of five highly specialized CF clinics in the Atlantic region. Of the patients who died in 2010 in Canada, half were under 26 years old.

Today, CF newborn screening is the standard of care in many Canadian provinces, the United States, Australia, New Zealand, and much of Western Europe. Yet we continue to lag. A child born with cystic fibrosis in Nova Scotia today will not have the same chance at a healthy life as a child born in British Columbia, Alberta, Saskatchewan, Manitoba or Ontario.

Without newborn screening, people with cystic fibrosis, including babies, are not diagnosed until they show symptoms of the disease, at which point irreversible damage to the lungs and digestive system may have already occurred. Parents should not have to endure months or years of anguish trying to understand their child’s condition before cystic fibrosis is finally diagnosed.

Early diagnosis for cystic fibrosis through newborn screening allows for immediate intervention and treatment. Ultimately, newborn screening can lead to longer, healthier lives.

As a resident of Nova Scotia and a longtime volunteer of Cystic Fibrosis Canada, I am asking all Nova Scotians to support the implementation of newborn screening for cystic fibrosis in Nova Scotia by adding your name to the on-line petition sponsored by Cystic Fibrosis Canada:

Thank you for joining CF families across our province in advocating for newborn screening.

Bob Fortier

President, Cape Breton Island Chapter/

Regional Director, Nova Scotia

Cystic Fibrosis Canada

Geographic location: Nova Scotia, Atlantic Canada, United States Australia New Zealand Western Europe British Columbia Alberta Saskatchewan Manitoba Nova Scotians

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