Yesterday, the Newborn Screening Saves Lives Reauthorization Act was introduced in the House of Representatives. PPMD is extremely proud to be a leading coalition voice in this milestone legislation aimed at eliminating preventable newborn deaths and severe disabilities through the increased use of comprehensive and standardized newborn screening tests.
This bipartisan 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 passed and signed into law in 2008 and reauthorized in 2014. To learn more, read the full release below.
Read the Press Release from Rep. Roybal-Allard:
Reps. Roybal-Allard, Simpson, Clark, Herrera Beutler Introduce Newborn Screening Saves Lives Reauthorization Act
Washington, DC – Today, Congresswoman Lucille Roybal-Allard (CA-40), Congressman Mike Simpson (ID-02), House Democratic Caucus Vice Chair Katherine Clark (MA-05), and Congresswoman Jaime Herrera Beutler (WA-03) introduced the Newborn Screening Saves Lives Reauthorization Act, an milestone in America’s fight to eliminate preventable newborn deaths and severe disabilities through the increased use of comprehensive and standardized newborn screening tests. This bipartisan 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.
“Newborn screening is one of the great public health success stories of our age,” said Rep. Roybal-Allard. “Our bipartisan Newborn Screening Saves Lives Reauthorization Act continues the oversight, coordination, and advancements made possible by both the original Newborn Screening bill and the Newborn Screening Saves Lives Reauthorization Act. 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, and I am happy to be joined in this reauthorization effort by Congresswomen Katherine Clark and Jaime Herrera Beutler. We all share a strong 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 have healthy, happy, and productive lives.”
“I am pleased to once again join my colleagues to reintroduce the Newborn Screening Saves Lives Act,” said Rep. Simpson. “I believe early detection and preventative medicine are some of the best ways to saves lives and reduce the cost of care. There is perhaps no greater example of this than newborn screening and this bill delivers the tools that allow nearly 12,000 babies each year to identify conditions that are rare but treatable. I applaud my friend and colleague Congresswoman Roybal-Allard for her work on this issue and I look forward to working with her again to advance this important legislation.”
“A simple set of tests can make a lifetime of difference,” said Vice Chair 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 will help our youngest Americans have happy, healthy lives.”
“When we make the effort early on to help children live full, healthy lives, that effort makes a profound difference throughout our communities,” said Rep. Herrera Beutler. “Every year, thousands of babies are born with health conditions that require early detection so doctors and parents can intervene with proper treatment. Through early intervention and treatment, children can be spared from serious, long-term health issues. I’m proud to join this bipartisan effort to ensure that comprehensive newborn screening programs continue and are improved to protect more babies.”
“Newborn screening saves the lives or preserves the health of thousands of babies every year,” said March of Dimes President and CEO Stacey D. Stewart. “No child should suffer or die when there is a means to quickly and accurately identify and treat the condition. March of Dimes appreciates the steadfast support of Representatives Roybal-Allard and Simpson, as well as Representatives Herrera Beutler and Clark, in promoting the health of all infants. We look forward to working with all them on the swift passage of this bill.”
“The Newborn Screening Saves Lives Reauthorization Act provides a critical update in federal law that keeps pace with the rapid changes and improvements in newborn screening,” said Association of Public Health Laboratories Executive Director Scott J. Becker, MS. “The new emphasis on data analytics fits perfectly with the broader effort to improve CDC public health surveillance as recognized in the House subcommittee version of the Labor-HHS appropriations bill. Passage will enable state public health laboratories to continue to provide life-saving screening services for our youngest citizens.”
In America, 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 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, 49 states and the District of Columbia screen for at least 31 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.
Unfortunately, critical gaps and challenges still remain. There are discrepancies in the number of screening tests given from state to state, and approximately 1,000 infants still face death or permanent disability each year as a result of what would have been 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 by saving billions of dollars throughout the lives of these children.
In addition, 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 Association for Clinical Chemistry; 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; Expecting Health at Genetic Alliance; 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).