The Newborn Screening Saves Lives Act lays the groundwork for national screening guidelines and authorizes federal support for assistance to states to improve their programs, develop educational materials for parents and health professionals and provide follow-up and treatment for infants when disorder is detected.
"National guidelines will create greater consistency across state programs," says Dr. Alan Fleischman, senior vice president and medical director of the March of Dimes. "That's priority one. But we must also ensure that families and health professionals have the information necessary for follow-up and treatment. Timely referral to experts knowledgeable about how best to manage the infant's condition is essential."
The March of Dimes estimates that between 16,000 and 20,000 infants in the U.S. are affected annually with one of the 29 treatable conditions for which the American College of Medical Genetics recommends screening. Of these infants, approximately 4,000 have a metabolic disorder and 12,000 to 16,000 have a hearing impairment. The average lifetime medical costs for a child who suffers from an undetected and untreated metabolic disorder can exceed more than $1 million dollars. Treatment, on the other hand, can be as simple as a change in diet.
"With all the statistics, politics and government budgets, it is sometimes easy to overlook what newborn screening is all about - saving lives," says Jill Levy-Fisch, president of Save Babies Through Screening Foundation. "This bill will help bolster state programs and most of all, it will help families."
Senators Christopher Dodd (D-CT), Orrin Hatch (R-UT) and Hillary
Clinton (D-NY) sponsored the Newborn Screening Saves Lives Act (S. 1858),
which, on December 13, 2007, the U.S. Senate approved by unanimous consent.
In the House of Representatives, the bill (H.R. 3825) was sponsored by
|SOURCE March of Dimes|
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