He Announced a $35 Million-a-Year Bill to Help States Screen Newborns for Panel Conditions. He Did Not Mention That HHS Abolished the Expert Committee That Builds the Panel.

Healthcare Source: Facebook Live press conference (official page) MISSING CONTEXT

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Why this matters

Every baby born in New York gets a heel-prick blood test in the delivery unit. Which conditions that test looks for is decided state by state, guided by a federal list called the Recommended Uniform Screening Panel. For twenty years the list was built by an expert advisory committee at the Department of Health and Human Services. That committee is the one that voted in 2024 to add Krabbe disease after the Kelly family’s long campaign, and Rep. Langworthy thanked it by name at the time.

On September 25 he stood with Jim and Jill Kelly to announce a bill that would pay states to implement the panel faster. He described the 2024 committee vote again. He did not say that the administration he supports terminated that committee in April 2025. This entry sets the announcement beside that record, and beside the reauthorization bill he already co-leads that has sat in his own committee for a year.

Statement

Source: Facebook Live from his Buffalo office, September 25, 2026, with Jim and Jill Kelly of Hunter’s Hope. The poster board at the podium:

“SURGE TO SAVE NEWBORNS ACT. Prioritizing Newborn Health Across America. Expanding access for all Recommended Uniform Screening Panel (RUSP) with state-by-state funding and national reporting mechanism to ensure quality screening across America. Expands Access: Helps states implement RUSP screenings faster by providing $35 million annually to support the implementation of recommended newborn screenings. Strengthens Infrastructure: Gives states dedicated federal resources to address the costs and challenges of adding new screenings. Increases Accountability: Requires states to track implementation and HHS to report progress to Congress.”

From his remarks:

“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. That is the gap that this bill addresses.”

“In May of 2023 we engaged with then-HHS Secretary Becerra, urging that the federal government recommend universal screening for Krabbe’s disease, and there was real resistance and perhaps some indifference. But we didn’t give up. We stayed on it doggedly, and finally in the following year, in 2024, the advisory committee voted to add it to the panel, and months later Health and Human Services gave it the final approval.”

“This bipartisan bill, and I’ve introduced it with Congresswoman Schrier, who serves on the Energy and Commerce Committee… would provide $35 million every year from 2027 to 2031 to help states implement recommended newborn screenings and strengthen the infrastructure necessary to do it. It also requires accountability. We need to know which states are screening for which conditions and where the gaps are.”

“This is non-controversial. This is common sense.”

Jim Kelly, at the same event: “We already got a note out to Mr. Kennedy, and hopefully we’re going to be able to sit down with him.”

The record

The committee he credited no longer exists

The Advisory Committee on Heritable Disorders in Newborns and Children was the body that reviewed evidence and recommended conditions for the federal panel. The Congressional Research Service records “the committee’s termination on April 1, 2025.” HHS’s own Federal Register notices say the same. The August 14, 2025 notice on Duchenne muscular dystrophy describes the committee as “now terminated.” The December 22, 2025 notice adding Duchenne to the panel says the committee “was tasked with reviewing available scientific evidence and then making recommendations to the Secretary,” and that after the evidence review “but prior to issuing a recommendation to the Secretary on the inclusion of DMD to the RUSP, ACHDNC was terminated.” The Secretary added Duchenne and metachromatic leukodystrophy on his own.

What replaced it, per HRSA’s August 12, 2026 notice: a $700,000 supplement to the Association of Public Health Laboratories “to establish a national newborn screening stakeholder workgroup,” which “will be a pathway for conditions to be considered and recommended for inclusion in the RUSP.” The workgroup reports to HRSA; HRSA recommends to the Secretary, “who has final decision-making authority.” It is a grant deliverable, not a statutory advisory committee, and it carries none of the public-meeting, evidence-review or 180-day-decision requirements that applied to the committee.

Rep. Langworthy’s July 9, 2024 release on the Krabbe decision thanked “the Advisory Committee on Heritable Disorders in Newborns and Children for their thorough review and recommendation.” His press-release archive, retained in full through September 23, 2026, contains no statement on the committee’s termination. Neither did the September 25 event.

The bill he already co-leads would restore the committee, and has not moved

On July 23, 2025, Rep. Kelly Morrison introduced H.R. 4709, the Newborn Screening Saves Lives Reauthorization Act of 2025. The govinfo roster lists Rep. Langworthy as an original cosponsor that day. Rep. Schrier’s July 25, 2025 release names him a co-lead and quotes him: “This reauthorization will undoubtedly save lives and spare countless families from unthinkable heartbreak.”

The bill reauthorizes the newborn screening programs through fiscal 2030, raises the authorization from $11.9 million to $20.883 million, makes the Hunter Kelly Research Program at NIH mandatory (“may” becomes “shall”), and directs CDC surveillance to run “taking into consideration the expertise of the Advisory Committee on Heritable Disorders in Newborns and Children established under section 1111.” It is written as if the committee exists. Its last recorded action: “Forwarded by Subcommittee to Full Committee by Voice Vote,” September 10, 2025. He sits on that committee and that subcommittee. As of the September 19, 2026 status update, nothing has happened since.

MeasureHis roleStatus
H.R. 4709, Newborn Screening Saves Lives Reauthorization ActOriginal cosponsor, July 23, 2025; co-lead per Rep. SchrierHealth Subcommittee forwarded to full committee Sept 10, 2025; no action in the 12 months since
“Surge to Save Newborns Act”Announced as sponsor, Sept 25, 2026No bill number or text posted as of publication

Where the $35 million figure comes from

The Surge to Save Newborns coalition launched March 5, 2026, “founded by more than 15 rare disease advocacy organizations, like the ALD Alliance and Hunter’s Hope Foundation, along with support from Travere Therapeutics.” Its website says it “is supported by Travere Therapeutics and BioMarin.” The coalition’s Manatt Health study, “prepared with support from Travere Therapeutics,” estimated $173,387,316 to implement every panel condition plus two anticipated additions across the states, or $6.95 per newborn, with New York’s share at $7,609,999. The coalition framed that as “a one-time surge funding request to Congress and the Administration.”

The bill as described, $35 million a year for five years, is that request spread over five years. The two companies make treatments for conditions on the panel; the coalition discloses their support on its own site, and this entry records it for the same reason. Rep. Langworthy said at the event, “I meet with different pharmaceutical companies on a very regular basis when they’re visiting Washington.”

The same year’s vote on what pays for the births

Medicaid finances about four in ten births nationally and nearly half of births in rural communities (KFF, October 2025). On May 22, 2025 (Roll Call 145) and July 3, 2025 (Roll Call 190) Rep. Langworthy voted for H.R. 1, the One Big Beautiful Bill Act, which KFF reports “is expected to reduce federal Medicaid spending by $911 billion over the next decade.” Georgetown’s Center for Children and Families counts 2 million fewer children enrolled in Medicaid and CHIP in April 2026 than in January 2025. The heel prick happens in the delivery unit; the coverage that pays for the delivery is the part of the budget he voted to cut.

The fair reading

The gap he describes is real. A federal recommendation does not fund a state laboratory, and the coalition’s study documents years-long lags between a condition’s addition and universal screening. A dedicated implementation fund with state reporting is a reasonable answer to that gap, it is bipartisan, and it is consistent with everything he has done on Krabbe since 2023. New York already screens for Krabbe; the bill’s beneficiaries are mostly babies born elsewhere. He also said his wife worked for Hunter’s Hope before he came to Congress, which explains a commitment that predates his office. None of that is in question here.

What is in question is the frame. A bill to implement the panel faster was announced without a word about who now decides what goes on the panel, by a member who once thanked the abolished committee by name and who co-leads a bill that would put it back on a statutory footing. That bill has waited a year in his own committee. The Kellys said they are seeking a meeting with Secretary Kennedy. He did not say whether he has sought one.

Questions this raises

  1. Does the Representative support restoring the Advisory Committee on Heritable Disorders in Newborns and Children, and has he raised its April 2025 termination with Secretary Kennedy or HRSA?
  2. Why has H.R. 4709, which he co-leads, not received a full-committee markup in the Energy and Commerce Committee since September 10, 2025?
  3. Is the $35 million in the new bill an appropriation or an authorization, and does it amend the same sections of the Public Health Service Act that H.R. 4709 reauthorizes?
  4. Does the bill’s reporting requirement cover how conditions are added to the panel now that the statutory committee is gone, or only how states implement them?
  5. Given that Medicaid pays for roughly four in ten births, how does he reconcile a $35 million-a-year screening fund with his vote for a law that cuts federal Medicaid spending by $911 billion?

Sources

Note: This entry documents publicly available records: a public press conference, Federal Register notices, a CRS report, govinfo bill files, House roll calls and published analyses. It makes no claim about the motives of anyone involved and no claim about the bill’s text, which had not been published at the time of writing.

Last updated: September 25, 2026