The U.S. House of Representatives has passed H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act. This legislation, sponsored by Representatives Lucille Roybal-Allard (D-CA) and Mike Simpson (R-ID) and supported by 119 bipartisan cosponsors, helps to protect the health and wellbeing of every infant born in the United States. The Senate passed similar legislation in late January; H.R. 1281 will now go to the Senate for a final vote.
“Newborn screening allows us to save lives and prevent serious disability,” stated March of Dimes President Dr. Jennifer L. Howse. “Given that one in every 300 infants has a condition that can be detected through this screening, newborn screening represents an indispensable investment in health, families, and our economy. The March of Dimes is deeply grateful to Representatives Roybal-Allard and Simpson for their steadfast leadership on this issue vital to newborn and their families.”
“Newborn screening is one of the 20th century’s great public health success stories. The Newborn Screening Saves Lives Reauthorization Act continues the oversight, coordination, and advancements made possible by the original Newborn Screening bill, and I am very grateful for the support and leadership of the March of Dimes in passing both the original bill and this Reauthorization Act,” stated bill sponsor Rep. Lucille Roybal-Allard. “Where a baby is born should not determine its chance of having a healthy future. The Newborn Screening Saves Lives Reauthorization Act will help ensure that all of our newborn babies -- wherever they are born in our country -- receive the comprehensive and consistent testing that they need in order to enjoy a healthy, happy, and productive life.”
“I am so pleased to see the House take up and pass the Newborn Screening Saves Lives Reauthorization Act,” said Congressman Mike Simpson. “Though it doesn’t receive a lot of national media attention, this bill is as important as any we will pass this year. Screening detects conditions that are often undetectable at birth and if left untreated can cause disability, developmental delay, illness, or even death.”
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 at least 31 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 so its important work could continue. It also tasks SACHD with providing recommendations to ensure timeliness in transporting and processing newborn screening tests and communicating results to health care professionals and families. Delays in this process can result in death or severe lifelong adverse consequences for newborns.
“Passage of the Newborn Screening Saves Lives Reauthorization Act is critical to the continued smooth functioning of the state-based newborn screening system,” Dr. Howse added. “The March of Dimes urges the Senate to pass this legislation as soon as possible.”
Senators Kay Hagan (D-NC) and Orrin Hatch (R-UT) are the authors of a companion bill, S. 1417, which was passed by the Senate unanimously on January 29. In March 2014, over 100 March of Dimes advocates visited more than 150 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.
In the U.S., newborn screening is a state-run public health program that identifies infants who may have genetic, metabolic, hormonal or functional conditions 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; another condition, Pompe disease, has been recommended by the SACHD and is awaiting Secretarial approval. 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.