Legislation reauthorizes funding for Hunter Kelly Research Program at National Institutes of Health
Congressman Brian Higgins announced the approval of the Newborn Screening Saves Lives Reauthorization Act of 2021. The bipartisan bill, co-sponsored by Higgins, expands funding for critical federal programs that assist states in improving and expanding their newborn screening programs, supporting parent and provider newborn screening education, and ensuring laboratory quality and surveillance.
“Advancements in science and testing have shown the ability to increase health and quality of life,” Higgins said. “This bill supports continued research and newborn testing so families can identify and address rare conditions, acting quickly to make sure they can grow into healthy children and adults.”
This legislation continues funding toward the Hunter Kelly Research Program at the National Institutes of Health (NIH). Established over a decade ago by the Hunter’s Hope Foundation, the program carries out, coordinates and expands newborn screening with the goal of increasing the number of conditions diagnosed at birth. The bill also directs the Centers for Disease Control and Prevention to coordinate laboratory quality assurance and surveillance in labs involved in newborn screening.
Higgins co-sponsored the original bill in 2008, as well as the reauthorization in 2014 and 2019. The 2021 reauthorization funds programs run by the Department of Health and Human Services (HHS) that provide grants to states and institutions to improve newborn health screenings, evaluate the effectiveness of screening and follow-up programs, and implement a clearinghouse for newborn screening information. It grants $31 million annually to programs through 2026. This renewed legislation continues to acknowledge the role newborn screening plays in the early treatment and prevention of disease and disability.
Organizations supporting the bill 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).