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CARES Foundation Statement of Position on Newborn Screening

UNION, NJ, May 19, 2007 - The CARES Foundation supports universal, comprehensive newborn screening for every baby, including testing for Congenital Adrenal Hyperplasia (CAH), and long-term follow-up for those determined to be affected. Newborn screening saves babies from death, mental retardation and severe disability by allowing for early intervention and timely treatment of certain devastating genetic diseases. Every baby deserves a healthy start at life.

Facts

• Newborn biochemical screening is simple and inexpensive. It involves no more than collecting a drop of blood from the heel of a newborn at birth on filter paper, allowing it to dry, and then sending it to a laboratory for testing.
• The tests are conducted for all newborns and completed before the infant leaves the hospital.
• Approximately one in every 800 babies will be born each year with a genetic disease that can be detected in newborn biochemical screening.
• In 2006, nearly 2/3 of all babies were screened for more than 20 disorders - twice the rate of 2005. Presently, CAH is included in newborn screening in many countries and 49 of the US states plus the District of Columbia and Guam.
• The cost to screen for CAH is approximately $2 per infant. The cost to treat a child with CAH who was not screened and suffered adrenal crisis, trauma and possible disability, can run hundreds of thousands of dollars or more over the child's lifetime, if the child does not die.
• No state can afford not to screen. Moreover, it has a moral obligation to do so.

Recommendation
The CARES Foundation recommends the mandating of newborn screening for at a minimum the 29 core conditions recommended for testing by the American College of Medical Genetics inclusive of testing for CAH, appropriate follow-up, treatment, education, and an annual review of all aspects of the screening program by an advisory committee.