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Higgins Announces Approval of Newborn Screening Bill

Jul 25, 2019
Press Release
Legislation Continues and Expands the Hunter Kelly Research Program Through the National Institutes of Health

Congressman Brian Higgins (NY-26) announced the House of Representatives has approved the Newborn Screening Saves Lives Reauthorization Act of 2019 (HR 2507). The bipartisan bill, cosponsored by Higgins, assists states in improving and expanding newborn screening programs, supports parent and provider newborn screening education, and ensures laboratory quality and surveillance.

Higgins said, “Early detection of disease allows for quick medical intervention often saving children a lifetime of health struggles. Families across the nation have a greater opportunity to fight difficult disease thanks to years of advocacy by the Kelly family.” 

Additionally, the law continues the Hunter Kelly Research Program, established a decade ago thanks to the leadership of the Kelly family and Hunter’s Hope Foundation.  The program helps researchers at the National Institutes of Health to develop better detection, prevention, and treatment strategies.  The bill approved by the House this week expands research opportunities by authorizing the government’s Hunter Kelly Research Program to accept donations from private and non-profit entities.

Congressman Higgins co-sponsored the original bill, the Newborn Screening Saves Lives Act, in 2008 and its reauthorization in 2014. The current bill renews federal funding to aid state-run health programs that identify infants who may have genetic, metabolic or functional disorders that may not be apparent at birth. This bill provides for the detection of nearly 40 conditions and standardizes screening processes amongst states.

Organizations endorsing the Newborn Screening Saves Lives Reauthorization Act include the Hunter’s Hope Foundation, American Academy of Pediatrics Cystic Fibrosis Foundation, March of Dimes, Muscular Dystrophy Association, the National Organization for Rare Disorders (NORD), and many others.  The bill will now move to the Senate for consideration.