HHS Fired Newborn Screening's Only Review Panel. It Kept Changing the Panel Anyway.

Nearly every baby born in the United States gets a heel prick before leaving the hospital — a blood spot sent to a state public health lab and checked against a federal list of treatable disorders that kill or disable children who aren't caught in time.▸ In 2025, that was 3,606,400 births, per CDC's provisional count. For 17 years, a single federal committee decided what belonged on that list, weighing evidence before recommending a condition to the HHS Secretary. In April 2025, HHS terminated it by email. Eight months later, the Secretary added two conditions to the list anyway — using the authority the committee used to exercise on his behalf, without the committee. A study published two months after that priced the cost of catching every state up on the conditions already approved at $173,387,316.

The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) was created in 2008 to do one job: evaluate whether a rare condition had a validated test and a treatment worth screening every newborn for, then vote on recommending it to HHS for the Recommended Uniform Screening Panel — the RUSP, the federal list states use to build their own screening programs.▸ It was the only federal body that did that evaluation. On a Thursday in early April 2025, HHS emailed the committee's members that it was terminated, effective immediately, offering no explanation beyond a note about "identifying ways to share this information more broadly," according to correspondence obtained by the Boston Globe. Two conditions — Duchenne Muscular Dystrophy (DMD) and Metachromatic Leukodystrophy (MLD) — were scheduled for a committee vote the following month. That vote never happened; the committee no longer existed to hold it, STAT News reported.

The list didn't stop growing.▸ On December 16, 2025, HHS Secretary Robert F. Kennedy Jr. added both DMD and MLD to the RUSP directly, exercising the Secretary's own statutory authority rather than the committee's evidence review, according to Manatt Health's report on the resulting funding gap. The RUSP now lists 40 core conditions and 26 secondary ones — 66 in total — every one of which a state can choose to screen for, or not. The committee that used to be the evidence check on that list answers to no one now, because it doesn't exist. Reauthorizing it is currently a bill, H.R. 4709, sitting in Congress since July 2025.

Getting a condition onto the RUSP is a recommendation, not a mandate — and not a check either.▸ Each of the 50 states and D.C. decides independently whether, and when, to actually build the lab capacity to screen for it. The gap between "recommended" and "implemented" is where a state's newborn screening panel actually gets decided, and a March 2026 report from Manatt Health — prepared with support from Travere Therapeutics and published through the advocacy coalition Surge to Save Newborns — put a price on closing it: $173,387,316, covering both the eight conditions added to the RUSP in the last decade that some states still haven't implemented, and two more conditions the authors expect HHS to add within three to five years.

$98,246,456 of that — $6.07 per newborn tested in a gap state — covers the eight conditions already on the RUSP that some states still don't screen for at all: Pompe disease, X-linked adrenoleukodystrophy (X-ALD), MPS I, MPS II, GAMT deficiency, Infantile Krabbe Disease, DMD, and MLD.▸ The remaining $75,140,860 is Manatt Health's estimate for two more conditions the authors expect HHS to add in the next three to five years — priced now, before a single state has had the chance to lag on them. A baby born without access to a screen their state hasn't implemented doesn't get a diagnosis at birth; the report puts the average delay families face finding the same diagnosis the hard way at 5 to 7 years — years a condition identifiable at birth is left to progress untreated.

Implementation doesn't arrive on schedule, and the data shows exactly how slowly.▸ Pompe disease was added to the RUSP in March 2015; eleven years later, 3 of the 51 U.S. jurisdictions still don't screen for it. DMD and MLD were added on December 16, 2025 — under the Secretary's own authority, without the committee that used to vet additions — and as of the report's research cutoff, every single one of the 51 jurisdictions was still screening for neither.

Older conditions do close the gap — just not quickly, and not to zero.▸ MPS I and X-ALD, both added in February 2016, are still missing in 5 and 3 jurisdictions respectively a full decade later. Newer conditions start at the other end entirely: MPS II (2022) is missing in 33 jurisdictions, GAMT (2023) in 37, and Infantile Krabbe Disease (2024) in 36. Every bar on this chart describes the same problem at a different age — a federal recommendation that a state has no deadline to act on, and in most states, years to get around to.

None of that variability tracks with what a state actually charges for the test.▸ Of 56 reporting U.S. states and territories, 42 charge a fee for the initial newborn screen and 7 charge nothing, according to NewSTEPs, the newborn-screening data clearinghouse run by the Association of Public Health Laboratories. The fee itself ranges from $0 to $291.43 — a number that says nothing about how many of the 66 RUSP conditions that state's lab actually tests for.

Rhode Island charges $291.43 per baby, the highest reported fee in the country.▸ Minnesota raised its fee by $7.35 in 2025 specifically to fund MLD screening — one of the two conditions added by Secretary directive rather than committee vote. New York, Florida, and the District of Columbia charge nothing at all. Fee level and implementation completeness are two separate decisions a state makes, funded two separate ways, and neither one is federally required to track the other.

Cost and gap-count figures come from Manatt Health's March 2026 report, commissioned with financial support from Travere Therapeutics and published through the Surge to Save Newborns coalition; per-state cost estimates in the underlying model are described by the authors as generalized projections, not individual state budgets. Fee figures are self-reported by states to NewSTEPs and current as of early 2026.