Langworthy introduces Surge To Save Newborns Act
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Rep. Nick Langworthy recently announced the introduction of the bipartisan Surge to Save Newborns Act, bipartisan legislation co-led by Democrat Congresswoman Kim Schrier, D-Wash., that would provide states with dedicated federal resources to implement newborn screenings for serious health conditions included on the federal Recommended Uniform Screening Panel (RUSP).
Langworthy made the announcement joined by NFL Hall of Fame Buffalo Bills quarterback Jim Kelly and his wife, Jill, who lost their son, Hunter to Krabbe disease.
Newborn screening can identify serious health conditions shortly after birth, giving families and doctors the opportunity to pursue appropriate follow-up care as early as possible. While the federal government maintains the RUSP to identify conditions recommended for inclusion in state newborn screening programs, adding a condition to the federal panel does not necessarily mean states immediately implement screening for that condition.
The Surge to Save Newborns Act would help close that gap by establishing a new federal grant program specifically designed to help states implement screening for conditions included on the RUSP. The legislation would provide $35 million annually from Fiscal Year 2027 through Fiscal Year 2031 for states to strengthen their newborn screening infrastructure and implement recommended screenings.
"One of our most sacred duties as a society is to protect our newborn babies," Langworthy said. "We already have the technological advancements to detect serious conditions – now we must do everything in our power to ensure that every single newborn has access to them. Adding a condition to the federal recommended panel is a good first step, but we need to make sure that states have the resources to put the screenings into practice. This bill will literally save lives and help get these precious babies into treatment before it's too late. We have to get this done."
The Surge to Save Newborns Act would establish a federal grant program administered by the Secretary of Health and Human Services to help states implement newborn screening for conditions included on the RUSP; target funding directly to state implementation by allowing a state’s chief health executive, their designee, or a state governmental agency to apply for funding and explain how the grants would be used to implement recommended screenings; require annual reports to Congress from 2027 through 2031; identifying which recommended conditions each state screens for, which have not yet been implemented, the effectiveness of the grants, and recommendations for legislative or administrative action; and invest in newborn screening infrastructure; and provide $35 million annually from 2027 through 2031, with funds remaining available until expended.
"When our son Hunter (2/14/97-8/5/05) was diagnosed with Krabbe disease, we learned firsthand how devastating it is to receive a diagnosis after the window for disease-altering treatment has already closed. Finding them early through newborn screening can mean the difference between life and death. The Surge to Save Newborns Act gives us a real opportunity to help states screen more babies, sooner, for conditions we already know should be found at birth. Hunter gave our family a mission – to fight so that other children have the best possible chance at a healthy life from the very start," Kelly said.
This legislation builds on several years of work to expand newborn screening, including the Congressman's efforts alongside Hunter's Hope Foundation to press the Department of Health and Human Services to recommend universal screening for Krabbe disease. In May 2023, Langworthy sent a letter to then-HHS Secretary Xavier Becerra urging the federal government to recommend universal screening for Krabbe disease. Following that advocacy, the Advisory Committee on Heritable Disorders in Newborns and Children voted in January 2024 to add Krabbe disease to the Recommended Uniform Screening Panel, and HHS granted final approval in July 2024.
The legislation is supported by a broad coalition of rare-disease patient advocacy organizations, family foundations and children's health organizations representing families affected by conditions that can be detected through newborn screening, including the Children's Hospital Association, ALD Alliance, ALD Connect, Aicardi-Goutieres Syndrome Advocacy Association, Association for Creatine Deficiencies, Believing for Bryleigh Foundation, Conner’s Crusade, CTX Alliance, Cure ALD, HCU Network America, Hunter's Hope Foundation, Judson’s Legacy, Katelynn's Butterfly Kisses, Krabbe Connect, Little Hercules Foundation, MLD Foundation, Parent Project Muscular Dystrophy, Project Alive, the RARE Foundation, Remember The Girls, The Global Foundation for Peroxisomal Disorders, United Leukodystrophy Foundation, United MSD Foundation for Peroxisomal Disorders , and the National Organization for Rare Disorders (NORD).
"Hunter's Hope has always been an organization whose work I have known and respected, and the Kelly family is one of the most beloved families in Western New York," Langworthy said. "When they came to our office because they couldn’t get the federal government to add Krabbe disease to the recommended newborn screening panel, I knew I had to step in and do everything in my power to help. While the Kelly's can never get their son back, we can ensure that other families don't have to suffer the same heartbreaking anguish of losing a child. This legislation is the next step forward to ensuring every family has access to lifesaving screenings – it's our moral obligation."