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Newborn Screening Saves Lives Reauthorization Act Passed by Senate

Cindy Pellegrini, (202) 659-1800; advocacymedia@marchofdimes.com

Bill will ensure quality and consistency of universal newborn screening programs

WASHINGTON, January 29, 2014 — The U.S. Senate has passed S. 1417, the Newborn Screening Saves Lives Reauthorization Act, by unanimous consent. This legislation, sponsored by Senators Kay Hagan (D-NC) and Orrin Hatch (R-UT), helps to protect the health and wellbeing of every infant born in the United States.

“No baby should die or suffer the devastating health consequences of a condition that could have been treated or prevented if identified through newborn screening,” stated March of Dimes President Dr. Jennifer L. Howse. “Passing the Newborn Screening Saves Lives Reauthorization Act is a particularly fitting way for the Senate to observe Birth Defects Prevention Month.”

“I am so pleased that today the Senate made important progress toward helping to save the lives of thousands of infants,” said Senator Hagan. “As a mom, I can remember being singularly concerned with one thing – was my new baby healthy? Improving these screening systems will help put more parents at ease by ensuring that potentially serious or fatal conditions are caught right away so they can quickly receive proper treatment. Newborn screening saves lives, and I urge the House of Representatives to act quickly so that more children in North Carolina and across the country have a greater chance to lead a full life.”

The Newborn Screening Saves Lives Reauthorization Act will renew federal programs that provide support for state efforts to ensure that every newborn is tested for over 30 conditions present at birth which, if undetected and untreated, can lead to serious disability or death. The bill reauthorizes 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.

In addition, the legislation would reauthorize the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHD), a committee of experts that reviews newborn screening tests and makes recommendations to the Secretary as to whether to add them to the Recommended Uniform Screening Panel (RUSP). The SACHD’s authorization expired in April 2013, compelling the Secretary appoint a temporary, two-year discretionary version of the committee to ensure that its important work could continue.

“The House of Representatives should pass the Newborn Screening Saves Lives Reauthorization Act as quickly as possible to ensure no gaps occur in the newborn screening system,” Dr. Howse added. “Infants and their families deserve speedy action to preserve these vital tests.”

Representatives Lucille Roybal-Allard (D-CA) and Mike Simpson (R-ID) are the authors of a companion bill, H.R. 1281, which currently has 113 bipartisan cosponsors. In September, hundreds of March of Dimes advocates visited over 300 Congressional offices to urge all Members of Congress to support the Newborn Screening Saves Lives Reauthorization Act. March of Dimes President Dr. Jennifer L. Howse testified in support of S. 1417 at a hearing of the Senate Health, Education, Labor and Pensions Subcommittee on Children and Families on September 26, 2013. March of Dimes Senior Vice President and Chief Medical Officer Dr. Edward McCabe testified in support of H.R. 1281 before a hearing of the Energy and Commerce Subcommittee on Health on November 20, 2013.

January is Birth Defects Prevention Month. In the U.S., newborn screening is a state-run public health program that identifies infants who may have genetic, metabolic or hearing disorders that may not be apparent at birth. If left untreated, these conditions can cause serious illness, lifelong disabilities and even death. In many cases, early diagnosis and treatment can prevent or reduce the severity of these conditions. Currently, the Secretary recommends that every state screen newborns for 31 core conditions. Approximately 1 in every 300 newborns in the U.S. has a condition that can be detected through screening.

In 2008, Congress passed the original Newborn Screening Saves Lives Act (P.L. 110-204), which established national newborn screening guidelines and helped facilitate comprehensive newborn screening in every state. Prior to passage of P.L. 110-204, the number and quality of newborn screening tests varied greatly from state to state. In 2007, only 10 states and the District of Columbia required infants to be screened for all the recommended disorders. Today, 42 states and the District of Columbia require screening for at least 29 of the 31 treatable core conditions.

About March of Dimes
The March of Dimes is a national voluntary health agency whose volunteers and staff work to improve the health of infants and children by preventing birth defects, premature birth and infant mortality. Founded in 1938, the March of Dimes funds programs of research, community services, education and advocacy. For the latest resources and information, visit marchofdimes.com or nacersano.org. Find us on Facebook and follow us on Twitter.

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