Passage of Newborn Screening Re-Authorization Act
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The dysfunction in Washington is at an all time high and it is now putting our most vulnerable, precious citizens at risk - newborn babies. A non-partisan bill, easily passed with Republican and Democratic support in 2008, reauthorizing vital guidelines and support for newborn screenings, has stalled. These screenings have saved so many babies. We need to send a message to Congress: The lives of our children cannot be a political football. Reauthorize the Newborn Screening Saves Lives Act today.
Every year, more than 4 million babies are born in the United States. Newborn screenings are a public health program which tests newborns for certain treatable genetic, metabolic, hormonal and functional conditions that are not otherwise apparent at birth. Approximately 1 in every 300 newborns in the U.S. has a condition detectable through the screening process. Without these screenings, many conditions could be left untreated. This can cause disability, developmental delay, illness or even death.
Prior to legislation, the number and quality of newborn screening tests varied greatly from state to state. Just before the original Newborn Screening Saves Lives Act passed in 2008, only 10 states and the District of Columbia required infants to be screened for all the recommended disorders. Many babies were left untreated for conditions easily detected at birth with these simple tests. The cost to families and our country was incalculable.
Thankfully Congress passed the original Newborn Screening Saves Lives Act, which established national newborn screening guidelines and helped facilitate comprehensive newborn screening in every state. Many conditions are now being successfully managed, improving outcomes and reducing costs. Families benefit everyday from early detection and intervention, their babies growing up into healthy, happy children. We cannot lose the progress we have made.
Today, as a result of the 2008 bipartisan Newborn Screening Act, 44 states and the District of Columbia require screening of at least 29 of the 31 treatable core conditions. Reauthorizing this bill will continue to ensure infants receive comprehensive and effective screenings by:
*Reauthorizing Health Resources and Services Administration (HRSA) grants to assist states’ efforts to improve their screening programs, educate parents and health care providers, and improve follow-up care for infants with conditions detected through newborn screening;
*Renewing the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children, which maintains and updates the Recommended Uniform Screening Panel that states adopt and implement;
*Authorizing a grant program to provide technical assistance to state newborn screening programs to track outcomes of infants identified through newborn screening and reauthorizing the Centers for Disease Control and Prevention (CDC) Newborn Screening Quality Assurance Program, and;
*Reauthorizing the National Institutes of Health (NIH) Hunter Kelly Newborn Screening program, which funds research aimed at identifying new treatments and new screening technologies.
We ask that the passage of The Newborn Screening Saves Lives Reauthorization Act, by the end of the year, be a priority. This critical, life saving bill is crucial to the health of every newborn born in this country. Please sign and share our petition today.
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