Jim Kelly and Chris Collins Lead the Way on Legislation to Enhance Newborn Screening

Congressman Chris Collins (NY-27) today released the following statement after H.R. 1281, Newborn Screening Saves Lives Reauthorization Act, passed the House and was sent to the President’s desk to sign into law.

“Simply put, this legislation will save lives,” said Congressman Collins.  “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.  I want to thank Buffalo Bills Hall of Fame Quarterback Jim Kelly - a leading advocate for newborn screening – for fighting so hard for the reauthorization of this legislation on behalf of his late son Hunter and children all across this country.”

"My wife Jill and I understand firsthand the devastation of learning that your child has a fatal disease after it’s too late for lifesaving treatment,” shared NFL Pro Football Hall of Fame Quarterback, Jim Kelly.  “Today, newborn screening for diseases like Krabbe gives children like my son, Hunter, the chance for the healthy life they deserve.” 

“It’s clear that Congressman Collins is committed to making our children’s health a priority from the very start,” Kelly stated.  “It takes a team to really make a difference and we’re so thankful for the Congressman’s help in getting this important bill all the way to the President’s desk.”

H.R. 1281 will continue to ensure infants receive comprehensive and effective screening by:

• Reauthorizing Health Resources and Services Administration grants to assist states’ efforts to improve their screening programs, educate parents and health care providers, and improve follow-up care for infants with conditions detected through newborn screening;

• Renewing the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children, which maintains and updates the Recommended Uniform Screening Panel that states adopt and implement;

• Authorizing a grant program to provide technical assistance to state newborn screening programs to track outcomes of infants identified through newborn screening and reauthorizing the Centers for Disease Control and Prevention (CDC) Newborn Screening Quality Assurance Program, and;

• Reauthorizing the National Institutes of Health (NIH) Hunter Kelly Newborn Screening program, which funds research aimed at identifying new treatments and new screening technologies.