Washington, DC – Today, Congresswoman Lucille Roybal-Allard (CA-40), Congressman Mike Simpson (ID-02), House Assistant Speaker Katherine Clark (MA-05), and Congresswoman Jaime Herrera Beutler (WA-03) introduced the Newborn Screening Saves Lives Reauthorization Act. This bipartisan legislation is an important step in America’s fight to eliminate preventable newborn deaths and severe disabilities through the increased use of comprehensive and standardized newborn screening tests. The legislation reauthorizes critical federal activities that assist states in improving and expanding their newborn screening programs, supporting parent and provider newborn screening education, and ensuring laboratory quality and surveillance. The bill renews funding for the programs of the Newborn Screening Saves Lives Act, which was originally introduced in the House by Reps. Roybal-Allard and Simpson and was passed and signed into law in 2008. The Newborn Screening Saves Lives Act was last reauthorized in 2014.

“A simple set of tests can make a lifetime of difference,” said Assistant Speaker Clark. “The Newborn Screening Saves Lives Reauthorization Act will fund essential programs and research to ensure that infants can receive effective, comprehensive screenings for treatable conditions. I am proud to co-lead this bipartisan bill that is a crucial step in our work to improve health care equity in America and ensure every child has the same pathway to a happy, healthy life.”

“Our bipartisan Newborn Screening Saves Lives Reauthorization Act continues the oversight, coordination, and advancements that have made newborn health screening one of the great public health success stories of our age ,” said Rep. Roybal-Allard. “I am very grateful for the longtime support of my colleague, Congressman Mike Simpson, who was critical in our efforts to pass both the original bill and the 2014 reauthorization. I’m also grateful for the work of two other public health champions, Assistant Speaker Katherine Clark and my Maternity Caucus co-chair, Jaime Herrera Beutler. We all share a belief that where a baby is born should not determine its chance at a healthy future. The Newborn Screening Saves Lives Reauthorization Act will help ensure all newborn babies receive the comprehensive and consistent testing they need to live healthy, happy, and productive lives.”

“Now more than ever, ensuring the health and wellbeing of newborn babies is of vital importance to the over-all health of our society,” said Rep. Simpson. “We know that newborn screening saves lives and reduces the cost of care, and that is why I am proud to once again join my colleagues in introducing the Newborn Screening Saves Lives Act to provide the tools necessary to screen babies for rare but treatable conditions. I thank my friend Congresswoman Roybal-Allard for her many years of dedication to this issue and look forward to advocating for the bill’s passage once again this Congress.”

“By taking active, early detection steps in identifying serious health conditions of newborns, we can help prevent lifelong complications and save countless lives,” said Rep Herrera Beutler. “As a mom of three young children, I’m proud to support access to life-saving health screenings for Southwest Washington families.”

In the United States, newborn screening is a state-run public health program that identifies infants who may have genetic, metabolic or functional disorders that may not be apparent at birth. If left untreated, these conditions can cause serious illnesses, lifetime disabilities, and even death. Before the development of newborn screening tests more than fifty years ago, these illnesses would have gone undetected until symptoms appeared.

Before the original Newborn Screening Saves Lives Act was enacted in 2008, only ten states and the District of Columbia required infants to be screened for a complete panel of recommended disorders, and there was no federal repository of information on the diseases. Today, all 50  states and the District of Columbia screen for at least 30 of the 35 currently-recommended core conditions. As a result, over 12,000 babies with one of these treatable, rare conditions are now identified each year.

Unfortunately, critical gaps and challenges still remain. Discrepancies in the number of tests given from state to state cause children to tragically die or become permanently disabled from otherwise treatable disorders. The Newborn Screening Saves Lives Reauthorization Act will help to avoid these preventable tragedies by providing states with the resources they need to improve their newborn screening programs and to uniformly test for all recommended disorders. It will also provide states with assistance in developing follow-up and tracking programs. These provisions will help our financially burdened health care system and save billions of dollars in expenses.

The legislation also renews the Secretary’s Advisory Committee for Heritable Disorders and requires the Centers for Disease Control and Prevention (CDC) to ensure the quality of laboratories involved in newborn screening. The bill continues the Hunter Kelly Newborn Screening Program, which helps researchers at the National Institutes of Health to develop better detection, prevention, and treatment strategies. This reauthorization bill also commissions a National Academy of Medicine (NAM) report to make consensus recommendations to shift to a 21st century newborn screening system.

Organizations endorsing the Newborn Screening Saves Lives Reauthorization Act include the American Academy of Pediatrics; American College of Medical Genetics and Genomics; Association of Maternal & Child Health Programs; Association of Public Health Laboratories; EveryLife Foundation for Rare Diseases; March of Dimes; Muscular Dystrophy Association; and National Organization for Rare Disorders (NORD).