WASHINGTON – A federal effort to help states expand their newborn health screening programs – which first became law after a push from retired Buffalo Bills great Jim Kelly and his wife, Jill, six years ago – will continue for another five years thanks to legislation passed by both houses of Congress this week.
The House passed the Newborn Screening Saves Lives Reauthorization Act by voice vote late Wednesday, two days after the Senate approved the measure, meaning it now goes to the White House for the president’s signature.
“Simply put, this legislation will save lives,” said Rep. Chris Collins, a Clarence Republican who pushed for passage of the measure. “This bipartisan effort answers the need for enhanced newborn screenings to give every baby born in this country the best chance at a healthy life.”
Sen. Charles E. Schumer, a New York Democrat who fought for the bill in the Senate, agreed.
“It has been an honor to work with Jim Kelly and my colleagues in both parties to pass this bill on enhanced newborn screening, which will catch treatable conditions in thousands of infants each year,” Schumer said. “Screening is the first and most important line of defense in diagnosing and treating a number of rare, but potentially fatal diseases that can tragically cut short a precious, new life, and this bill will bolster that effort in New York and beyond.”
Collins and Schumer thanked Kelly – who traveled to Washington last year to push for the bill’s renewal – for leading the lobbying effort. The Kellys started advocating for the original legislation after their son, Hunter, died in 2005 of Krabbe disease, one of the rare conditions that increased newborn screening can detect.
“My wife Jill and I understand first hand the devastation of learning that your child has a fatal disease after it’s too late for life-saving treatment,” Kelly said. “Today, newborn screening for diseases like Krabbe gives children like my son, Hunter, the chance for the healthy life they deserve.”
• Reauthorizes a Health Resources and Services Administration grant program that helps states improve their screening programs, educates parents and health care providers, and bolsters follow-up care for infants with conditions detected through newborn screening.
• Renews the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children, which maintains and updates the set of screening measures that states adopt and implement;
• Reauthorizes the National Institutes of Health’s Hunter Kelly Newborn Screening program, which funds research aimed at identifying new treatments and new screening technologies.
• Reauthorizes the Centers for Disease Control and Prevention’s Newborn Screening Quality Assurance Program.
• Authorizes a new grant program to provide technical assistance to state newborn screening programs so that they can track infants that have been identified through newborn screening programs.