Newborn screening for cystic fibrosis (CF) 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 may look for signs of 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 have already occurred at the time of diagnosis. By that time, parents and families will have endured months or years of anguish trying to understand their child’s health condition before cystic fibrosis is finally diagnosed.
Currently, five provinces have implemented CF newborn screening: Alberta, Ontario, British Columbia, Saskatchewan, and Manitoba. In April 2013, Nova Scotia announced that it will be expanding its newborn screening program to include cystic fibrosis.
Cystic Fibrosis Canada continues to advocate for the addition of cystic fibrosis to newborn screening programs in Quebec, Newfoundland and Labrador, New Brunswick and Prince Edward Island.
Cystic Fibrosis Canada has appealed to the previous Liberal Government and the current Parti Quebecois 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 Health Minister Réjean Hébert about newborn screening. On November 27, 2012, we received a response from the office of Quebec's Minister of Health and Social Services.
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 (CF) in Québec. It is regrettable that the authors 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 are calling for more studies to be done.
We encourage residents of Quebec to be advocates for cystic fibrosis newborn screening by contacting your Member of the National Assembly to explain the importance early detection and treatment.
If you are a resident of Quebec, please sign our petition to bring newborn screening to Quebec.
Following our successful advocacy efforts, the Nova Scotia Finance Minister announced as part of her 2013 budget that the province’s newborn screening program will be expanded to include newborn screening. As newborn screening in New Brunswick and Prince Edward Island are conducted by Nova Scotia, we are hopeful that cystic fibrosis newborn screening will also be coming soon to these two provinces.
Cystic Fibrosis Canada is making it an advocacy priority to bring cystic fibrosis newborn screening to Newfoundland and Labrador. We are pleased to share with you an interview on CBC with John Bennett, a father of a two year old with CF and our Provincial Advocate in the province about the importance newborn screening.
Our Vice President of Advocacy, Research and Healthcare wrote the Premier and Opposition Party Leaders in April 2013 asking for their commitment to implement cystic fibrosis newborn screening in Newfoundland and Labrador.
Read testimonials from Dr. Mark Montgomery (Alberta), Dr. Thomas Kovesi (Ontario) and Dr. Steven Kent (British Columbia) on the importance and benefits of newborn screening for cystic fibrosis patients.