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Committee votes unanimously to refer newborn screening bill to appropriations after advocates highlight rare-disease cases

January 16, 2025 | 2025 Legislature VA, Virginia


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Committee votes unanimously to refer newborn screening bill to appropriations after advocates highlight rare-disease cases
A House committee voted unanimously, 22-0, to report HB 1782 to the Appropriations Committee after testimony from rare-disease advocates, hospitals and parents. The bill would require the Virginia Department of Health to automatically consider disorders placed on the federal Recommended Uniform Screening Panel (RUSP) for the Commonwealth newborn screening program and set deadlines for evaluation and implementation.

Delegate Sullivan, the bill patron, told the committee Virginia performs more than 4 million newborn screening tests yearly through the Division of Consolidated Laboratory Services and the Department of Health, and said HB 1782 would codify an evidence-driven process already in practice. Dylan Simon of the EverLife Foundation said the bill would remove the burden from patient communities to initiate consideration of new disorders and called it an important step to ensure early diagnosis and access to life‑saving therapies.

Brent Rawlings of the Virginia Hospital and Healthcare Association described the program's costs and the financial implications of adding conditions. He said the two disorders most recently added in 2020 — spinal muscular atrophy (SMA) and X-linked adrenoleukodystrophy (X-ALD) — cost about $1.5 million and $1.25 million, respectively, and that the per-birth fee was adjusted to cover program expenses. A parent who addressed the committee described a daughter born two months before Virginia added SMA to the panel; he said early detection and treatment for SMA occurred in "hours, days, and weeks," and that missing newborn screening delayed access to treatment.

Members asked clarifying questions about the bill's timelines and the role of the advisory council; the sponsor and witnesses said the measure codifies existing review practices and leaves time to resolve technical questions with the Department of Health and other stakeholders before final implementation. The committee moved and seconded a motion to report the bill to Appropriations; the clerk opened the roll and the motion carried 22-0.

The bill, as reported, directs the Department of Health to evaluate nominated disorders within 12 months and implement testing within 36 months after designation, and it includes language intended to ensure resources are available for additions to the panel. The committee record shows no opposition votes.

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Scribe from Workplace AI
Scribe from Workplace AI