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Volunteer Advocate

CF Newborn Screening

Newborn screening for cystic fibrosis is a vital tool to help slow the progression of this fatal genetic disease. Newborn screening is the process of testing newborns for specific disorders. Shortly after a baby is born, a doctor or nurse takes a small blood sample from the heel of the baby’s foot. The sample is sent to a laboratory, where it is tested for a number of disorders. One of the tests detects cystic fibrosis.

Importance Of Screening For Cystic Fibrosis

Early diagnosis for cystic fibrosis through newborn screening allows for immediate intervention and treatment. Early interventions have been shown to result in improved height, weight, and cognitive function, help maintain healthy respiratory function, and may reduce hospitalizations and increase life expectancy. Ultimately, newborn screening can lead to longer, healthier lives.

Without newborn screening, irreversible damage to the lungs and digestive system may occur. Parents and families endure months or years of anguish trying to understand their child’s health condition before cystic fibrosis is finally diagnosed.

Newborn Screening For Cystic Fibrosis In Canada

Currently, eight provinces have implemented CF newborn screening:

On March 27, 2014, the Government of Newfoundland and Labrador announced that the province will be expanding the Newborn Screening Program to include cystic fibrosis. On November 28, 2014, the Government of Prince Edward Island also announced that it will be expanding its Newborn Screening Program to include cystic fibrosis.

Quebec

Cystic Fibrosis Canada appealed to the provincial government to implement cystic fibrosis newborn screening in the province. To date, there has been no commitment from the Government to act.

On November 14, 2012 a letter was sent to the former Health Minister about newborn screening. On November 27, 2012, we received a response from the office of Quebec’s Minister of Health and Social Services. We sent a follow up letter on July 31, 2014.

On March 26, 2013, the Institut national de santé publique du Québec (INSPQ) published a progress report on the diagnosis and initial management of children with cystic fibrosis in Quebec. It is regrettable that the authours of the report failed to recognize the importance of newborn screening in helping babies with cystic fibrosis to get the help they need sooner. Instead, the report’s authors call for more studies to be done. Cystic Fibrosis Canada is working tirelessly with CF clinicians to raise awareness and gain support for newborn screening in Quebec.

We encourage residents of Quebec to raise their voices for cystic fibrosis newborn screening by contacting their Member of the National Assembly to explain the importance of early detection and treatment.

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