Update: Newborn Screening Saves Lives Re-Authorization Act Has Passed and is Off to the President to be Signed Into Law

March of Dimes is urging the House to swiftly vote on H.R. 1281, the Newborn Screening Saves Lives Re-authorization Act as amended and passed by the Senate.  This bipartisan legislation will help ensure that infants continue to receive comprehensive, effective, and lifesaving screenings for genetic and endocrine conditions soon after birth. It’s vitally important to schedule a vote on the bill ASAP as Congress is likely to adjourn at the end of this week. March of Dimes is circulating a sign-on letter today to be delivered to Congress. To add your organization to the list of organizations supporting the passage of Newborn screening please contact Diane Wilkinson at dwilkinson@marchofdimes.org

Here is the text of the sign-on letter:

Dear Speaker Boehner, Leader Pelosi, Leader McCarthy, and Whip Hoyer:

 

The undersigned organizations urge you to swiftly schedule a vote on H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act as amended and passed by the U.S. Senate.  This bipartisan legislation will help ensure that infants continue to receive comprehensive, effective and lifesaving screenings for genetic and endocrine conditions soon after birth. Your leadership on this important legislation will significantly impact the lives of families nationwide.

 

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 prevents permanent disability, developmental delay and even death.  No child should suffer or die when there is a means to identify and treat these conditions.

 

Since Congress passed the original Newborn Screening Saves Lives Act (P.L. 110-204) in 2008, there has been significant progress made to establish national newborn screening guidelines and to facilitate comprehensive newborn screening in every state. Prior to passage of P.L. 110-204, the number and quality of newborn screens 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 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.

 

Thank you for your enduring commitment to improving children’s health.  We look forward to working with you on behalf of families across the nation to advance this important legislation as quickly as possible.

 

 

Sincerely,

 

March of Dimes

 

cc:        The Honorable Fred Upton

The Honorable Henry Waxman