I respectfully submit this letter in support of S2663 - Newborn Screening Saves Lives Act of 2006 - and urge you to place this bill on the Senate Committee on Health, Education, Labor & Pensions (HELP) agenda immediately.
CARES Foundation, Inc. is a nonprofit organization that provides support to individuals and families affected by Congenital Adrenal Hyperplasia (CAH) - one of the conditions tested for by newborn screening programs across the country. - For the past five years I have served as CARES' Executive Director. I am also the parent of a child with a form of CAH. I have seen the devastation that can occur when states do not screen at birth for CAH and other genetic diseases that lead to infant death, disability, or severe mental retardation and can be prevented or minimized with early intervention and treatment.
The potential physical, emotional and financial cost of an infant going undetected for any of the 29 diseases recommended for screening by the American College of Medical Genetics (ACMG) are substantial. In the case of CAH, in its severest form it is a life-threatening disorder. Frequently, newborn CAH babies show no outward signs of the disease and are sent home only to present a few weeks later for urgent medical attention at a time when they are beyond resuscitation. On the other hand, if children with CAH are detected before adrenal crisis, they will not need to receive governmental aid and will live completely normal lives. They will not become handicapped or suffer learning disabilities.
Because most families would have no reason to suspect these conditions as potential problems, failure to recognize these disorders at birth has such dire consequences and treated infants have the potential for a full and productive life, newborn screening for CAH and other diseases like it is invaluable.
On behalf of the 11,000 babies born in the United States each day as well as the 2000 members of the CARES Community, I implore you to place S2663 on the Senate Committee on HELP agenda immediately. The power to save the lives of babies across the nation is in your hands.
