Reps. Roybal-Allard, Simpson, Clark, Herrera Beutler Celebrate House Passage of Newborn Screening Saves Lives Reauthorization Act
WASHINGTON, DC – Today, U.S. Representatives Lucille Roybal-Allard (CA-40), Mike Simpson (ID-02), Jaime Herrera Beutler (WA-03), and House Assistant Speaker Katherine Clark (MA-05) celebrated the House’s passage of the Newborn Screening Saves Lives Reauthorization Act (H.R. 482), a bill meant to eliminate preventable newborn deaths and severe disabilities through the increased use of comprehensive and standardized newborn screening tests. The bipartisan legislation reauthorizes critical federal activities that help states improve and expand their newborn screening programs, support newborn screening education for parents and providers, and ensure 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 Senate companion bill, S. 350, was introduced by Senators Maggie Hassan (D-NH) and Roger Wicker (R-MS).
“I am thrilled that the House has once again passed my lifesaving bill to help ensure all babies receive the comprehensive, consistent, and reliable testing they need to live healthy and productive lives,” said Rep. Roybal-Allard. “I’m grateful to my colleagues Mike Simpson, Katherine Clark, and Jaime Herrera Beutler for their partnership as we worked to pass this bill through the House. Newborn screening is an amazing public health success story – a demonstration of the progress we can make when private organizations, public institutions, industry, advocates, scientists, providers, and parents all work together toward the common goal of a healthier future for our children.”
“The science is clear: early detection of treatable conditions in newborn babies can dramatically improve prognoses and give families a head start in managing and overcoming health concerns,” said Rep. Simpson. “I am proud to partner with Representatives Lucille Roybal-Allard, Katherine Clark, and Jaime Herrera Beutler on this legislation to reauthorize the bipartisan Newborn Screening Saves Lives Act, and I look forward to its passage in the Senate.”
“Simple tests can prevent newborn deaths and severe disabilities,” 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 look forward to the Senate passing this bipartisan bill and sending it to the President’s desk so we can continue to advance health care equity in America and ensure every child has a pathway to a happy, healthy life.”
“With thousands of babies born each year with health conditions that require early detection to effectively treat, it’s vital we expand access to comprehensive newborn screening programs,” said Rep. Herrera Beutler. “I’m pleased the U.S. House took the important step of approving the Newborn Screening Saves Lives Reauthorization Act to ensure infants have access to screenings to prevent long-term complications and save lives.”
In the United States, newborn screening is a state-run public health system in which all newborn infants receive a simple blood test that identifies specific genetic, metabolic or functional disorders that may not be apparent at birth. If left untreated, these conditions can cause serious illness, 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. Newborn screening gives these children have the chance to live relatively normal lives.
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, 50 states and the District of Columbia screen for at least 30 of the 35 currently recommended core conditions, and parents and professionals have access to a central database of newborn screening information when a baby is diagnosed with one of these disorders.
Over the past decade, newborn screenings and follow-up systems have improved dramatically, and several new screenings have been added. Passing H.R. 482 will maintain this progress and ensure that the advisory committee created under the original Newborn Screening bill continues its critical work of recommending new screenings to state programs. H.R. 482 will also address newborn screening gaps and challenges that still remain, including discrepancies in the number of screening tests given from state to state, resulting in infants facing death or permanent disability because they do not receive core newborn screening tests to identify 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 healthcare system by saving billions of dollars throughout the lives of these children.
Additionally, the bill 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 also 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; Cystic Fibrosis Foundation; Cure SMA; EveryLife Foundation for Rare Diseases; Hunter's Hope Foundation; Immune Deficiency Foundation; March of Dimes; Muscular Dystrophy Association; National Organization for Rare Disorders (NORD); and Parent Project Muscular Dystrophy (PPMD).