Newborn Screening Saves Lives Reauthorization Act
For the past half-century, virtually every one of the more than 4 million infants born in the United States each year has undergone newborn screening. Newborn screening is a well-established and proven state public health program that identifies newborns with certain genetic, metabolic, hormonal and functional conditions. Initially, affected newborns appear healthy, but can deteriorate quickly and without warning. Approximately 1 in every 300 newborns in the U.S. has a condition that can be detected through screening. With the early detection afforded by newborn screening, affected infants receive prompt treatment, which can prevent permanent disability, developmental delay and even death. No child should suffer or die when there is a means to identify and treat the condition.
Success!! The Newborn Screening Saves Lives Reauthorization was passed by the Senate on December 8, 2014 and by the House of Representatives on December 10, 2014. It has now gone to the President for signature into law. Since Congress passed the original Newborn Screening Saves Lives Act (P.L. 110-204) in 2008, significant progress has been made to establish national newborn screening guidelines and to facilitate comprehensive newborn screening in every state. Prior to passage of that law, the number and quality of newborn screening tests varied greatly from state to state. In 2002, some states were screening for only four conditions, while others were screening for up to 36. Today, 44 states and the District of Columbia require screening for at least 29 of the 31 treatable core conditions on the Recommended Uniform Screening Panel. This widespread expansion and standardization of newborn screening has led to life-saving treatments and interventions for at least 12,500 newborns diagnosed with genetic and endocrine conditions each year.
The Newborn Screening Saves Lives Reauthorization Act (H.R. 1281/S. 1417) will continue the systematic evidence-based and peer-reviewed process of determining the federal Recommended Uniform Screening Panel, which now serves as the model for state newborn screening programs. If enacted, it would also extend federal programs that provide assistance to states to improve and expand their newborn screening programs; support parent and provider education; and ensure laboratory quality and surveillance for newborn screening programs.
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Frequently Asked Questions
What is the history of government programs for women and children?
Title V of the Social Security Act, was signed into law by President Franklin D. Roosevelt in 1935. Title V, or the Maternal and Child Health (MCH) Services program, pledged support to states to provide services that would protect the "health of our nation's mothers and children."
What federal agencies are involved in premature birth research?
Multiple federal agencies support prematurity-related research but among the most engaged are the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health and Maternal and Infant Health Research within the Centers for Disease Control and Prevention.
How can I learn what conditions newborns are screened for in my state?
Two key resources are the National Newborn Screening and Genetics Resource Center and the March of Dimes. You can easily compare state programs on our Peristats website.