ADDING CYSTIC FIBROSIS TO THE NEWBORN SCREENING PANEL
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After Sickle Cell Disease, CF is the most common genetic disease in the US. Its is estimated that over 50 babies a year are born in Illinois with CF
Background on Newborn Screening
- Newborn Screening became a mandated public health practice used within the first 48 hours of the infant’s life for the early identification of certain genetic, metabolic, hormonal and/or functional conditions.
- These birth defects have no immediate visible effects on a baby, but unless detected and treated early, can cause physical problems, mental retardation and even possible death. Early diagnosis and proper treatment can make the difference between lifelong impairment and healthy development.
- The test is preformed within 3 days of birth. The baby’s heel is pricked to obtain a few drops of the infant’s blood that are needed to perform laboratory analysis. Babies that test positive are contacted by the Illinois Department of Public Health.
- Disparities among states in newborn screening tests given at birth mean too many babies with serious birth defects are not being diagnosed and treated in time. Approximately four million infants are born annually in the United States, and of these, an estimated 150,000 are born with serious birth defects (3.75%).
March of Dimes Policy
The March of Dimes advocates for comprehensive newborn screening for all babies in this country, regardless of the state in which they are born. The tests recommended by the March of Dimes enable reliable diagnosis of serious conditions for which there is a proven treatment for a newborn’s metabolic or hearing deficiency that can help avoid devastating consequences. Newborn screening does not include or involve parental screening. Status of Newborn Screening in Illinois
- According to the Illinois Department of Public Health, Illinois screens all newborns for the 28 of the 29 disorders recommended by the Mach of Dimes and the American College of Medical Genetics (ACMG), the only remaining screen to be added to the panel is Cystic Fibrosis (CF)
- After sickle cell disease, CF is the most common life-shortening genetic disorder in the United States. CF is an inherited disease that causes thick, sticky mucus to build up in the lungs and digestive system and other organs of the body. Although there is no cure, due to advances in medical care, the medial age of survival is now in the early to mid 30’s. By screening for CF in newborns, treatment can start before symptoms occur, which can enhance nutrition and minimize or delay complication, thereby giving newborns the best chance for a healthy and long life.
- If CF screening was implemented, based on an estimate of 180,000 births/year and the racial/ethic distribution of the Illinois population, approximately 50 babies would test positive. The technology needed to add CF would be purchased by funds available in the Newborn Screening Fund. In addition, it is anticipated by state health officials that the screening would be increased by $10 accommodate the increase in follow-up services.
March of Dimes Recommendation:
1. Contact the Office of the Governor to encourage the addition of Cystic Fibrosis to the Newborn Screening Panel.
2. Protect the Newborn Screening Fund from being “swept” -- maintain all funds to support newborn screening and follow up services.
Supporting Agencies Include:
Children’s Memorial Hospital
Illinois Chapter, American Academy of Pediatrics
Illinois Division of the American Lung Association
Provena Saint Joseph Medical Center, Joliet
Shriver Center on Poverty Law
Voices for Illinois Children
The Cystic Fibrosis Institute
For more information contact:
Jennie Pinkwater
Coordinator of Public Affairs
March of Dimes
111 W. Jackson Suite 2200
Chicago IL 60604
Phone: 312-596-4709
Email: jenpinkwater@marchofdimes.com
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