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Board directs technical advisory committee to evaluate newborn screening for MLD after federal RUSP listing
Summary
After the federal RUSP added metachromatic leukodystrophy (MLD), the board declined direct rulemaking and directed staff to convene a technical advisory committee to assess screening feasibility, treatment access, costs, and equity implications in Washington.
The Washington State Board of Health directed staff to form a technical advisory committee (TAC) to evaluate newborn screening for metachromatic leukodystrophy (MLD) after receiving an updated petition and noting MLD’s federal RUSP listing.
Dean Sir of the MLD Foundation told the board the petition had been revised to address earlier concerns and that New York and Pennsylvania had begun universal screening. He emphasized that early detection matters because gene therapy is most effective before symptoms…
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