The Newborn Screening Saves Lives Reauthorization Act of 2014

This past week, national newborn screening legislation unanimously passed the U.S. House of Representatives, and is now headed to President Barack Obama’s desk for signature. The bill implements new tracking measures and timetables aimed at eliminating critical delays in the newborn screening process, so that infants with deadly yet treatable genetic disorders can be diagnosed as soon as possible. The Newborn Screening Saves Lives Reauthorization Act, brings back a 2008 measure that provides $19.9 million in funding for programs that support the country’s state-run newborn screening systems. This legislation has been pending since January 2014, but became stalled when Republican senators took issue with privacy concerns about genetic research funded by the bill.

The initiative came about in large part due to an investigation conducted by the Milwaukee Journal Sentinel that found that thousands of hospitals were late in sending babies’ blood samples to state screening labs. Save Babies Through Screening Foundation board member Sarah Wilkerson was a key contributor to the Milwaukee Journal Sentinel investigation, sharing her son Noah’s story, who died as a result of the hospital waiting two days before his blood sample was taken by courier to the lab.

About the Save Babies Through Screening Foundation

Comprised of volunteers whose lives have been touched by newborn screening (NBS), Save Babies Through Screening Foundation is the only advocacy organization in the country dedicated to Newborn Screening. SBTS aims to educate parents, pediatric healthcare providers and policy makers about available comprehensive Newborn Screening, the importance of obtaining positive or other test results requiring follow-up actions within five days of birth and the importance of prompt confirmatory testing and treatment/management when required. The Foundation’s mission is to ensure that every newborn in the U.S. be screened successfully, effectively and comprehensively.

Save Babies Through Screening Foundation programs are supported by public contribution’s that help us deliver vital education, community services, and advocacy programs free of charge. Every gift, whether large or small, helps us protect children from the effects of these detectable and treatable disorders.

CONTACT: Save Babies Through Screening Foundation
http://www.savebabies.org
P. O. Box 42197
Cincinnati, OH 45242
Toll Free: 1-888-454-3383

Contact Information

Jill Levy-Fisch

President

The Saves Babies Through Screening Foundation

Contact via E-mail