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State Board pauses newborn screening expansion; TAC urges alternatives and clearer criteria
Summary
The Washington State Board of Health voted April 8 to pause certain newborn screening expansion activities for one year because the NBS Program received roughly 20% of requested funding. At the April 29 Newborn Screening Technical Advisory Committee meeting, members pressed staff on paused reviews (including Krabbe) and suggested efficiency measures and better evaluation metrics.
The Washington State Board of Health’s Technical Advisory Committee on Newborn Screening (TAC) met April 29, 2026, to review recent Board actions and to provide feedback after the Board decided April 8 to pause certain newborn screening (NBS) policy activities for one year because of program funding shortfalls. Staff said the Department of Health received about 20% of the funding it requested for the NBS Program.
The pause, staff said, affects implementing conditions already approved but not yet operational (including Wilson disease) and suspends future expansion activities. Staff clarified that routine screening operations will continue uninterrupted and that all petitions for new conditions will continue to be logged and tracked.
TAC members asked whether new clinical data had been considered in recent Board reviews. A TAC member noted newly available enzyme replacement therapy (ERT) evidence for mucopolysaccharidosis II (MPS II); staff responded that the treatment was not Food and Drug Administration–approved at the time of the Board’s review and therefore was not included in that evaluation.
Members raised concerns about pausing work already underway, citing the Krabbe disease review as an example of a condition that had prior work completed and could face lengthy implementation timelines once restarted. TAC members urged the Board and staff to consider how delays would affect families and the timeline from approval to implementation.
To address resource constraints and preserve the committee’s value, TAC members proposed quantifying the TAC’s impact through cost–benefit analyses, pursuing academic partnerships to support evidence reviews, combining condition reviews where feasible to improve efficiency, and revisiting the NBS evaluation criteria. Staff acknowledged these suggestions and said materials had been shared in advance and that the Department appreciated member contributions.
The meeting closed with staff reviewing the TAC’s work in 2025 and 2026 and inviting members to complete a follow-up survey and to remain informed about future reconvening. Kelly Oshiro and Nini Shridhar, TAC co-chairs, adjourned the meeting at 12:00 p.m.
