CLARENCE, N.Y. (WKBW) — Western New York Republican Congressman Nick Langworthy joined Buffalo Bills legend and Hall of Famer Jim Kelly and his wife Jill Kelly in Clarence to announce new legislation aimed at expanding life-saving newborn screenings across the country.
"It is one of our most sacred duties as a society to protect our most vulnerable citizens," Langworthy stated. "Our babies and our children are the most vulnerable among us."
The bipartisan Surge to Save Newborns Act would provide $35 million from 2027 to 2031 to help states implement newborn screenings recommended by the federal government.
Every baby currently receives a heel prick blood test at the hospital, but each state decides what to test for. Langworthy said a gap exists between federal recommendations and what states are actually equipped to carry out.
"The problem is that when a condition is added to the federal recommended uniform screening panel, that doesn't automatically mean that every state has the resources and the infrastructure to implement that newborn screening," Langworthy explained. "That is the gap that this bill addresses."
The Kellys founded Hunter's Hope Foundation in 1997 after their son Hunter was diagnosed with Krabbe disease, a nervous system disorder. Hunter died in 2005. It took the family 20 years to get the disease added to newborn screening panels.
"Every picture that we have, obviously, of Hunter is precious because we only have so many," Jill Kelly said as she held a picture of her son.
Jill Kelly said the goal is straightforward: every baby in the country should be tested for every treatable disease.
"That's it," Jill Kelly said. "We want every state to get up to par to make sure that every state is being tested for every single disease."
The Surge to Save Newborns Act would:
- Provide dedicated funding to states: 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: Allow 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.
- Track state progress: Require annual reports to Congress from FY2027 through FY2031 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.
- Invest in newborn screening infrastructure: Provide $35 million annually from FY2027 through FY2031, with funds remaining available until expended.
WATCH: Surge to Save Newborns Act aims to expand newborn screenings across all states
Jim Kelly recalled how limited New York's screening program was when Hunter was first diagnosed.
"New York was testing, I think, for 12 diseases. Where other states like Illinois were 45, 50. New York, 12, 13, you gotta be kidding me," Kelly said. "That's when we really stepped up, and now New York's over 45."
Jim Kelly said the screenings could give every child a "chance to dream" of their future.
"We're not stopping until every state in this country is testing for the maximum amount of treatable diseases to give these kids a chance to dream, like I was able to do as a little boy," Kelly said.
Jill Kelly also spoke about the lasting impact the loss of a child has on an entire family, including Hunter's siblings.
"I think that we lose sight of the fact that yes, parents are impacted by this, but so are families and so are siblings. And one of Hunter's siblings is here right now, his youngest sister, Cameron, and there is no way to even explain how difficult it is for a family to walk through the loss of a child, and it lasts for years. It doesn't just go away. Grief is very curious like that," Jill Kelly described.
Langworthy tells me he is hoping to bring the legislation before Congress for a potential vote after the November elections.
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