Board to convene technical advisory committee to evaluate newborn screening for MLD
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Summary
After discussion that metachromatic leukodystrophy (MLD) was added to the national RUSP in December 2025 and that gene therapy exists but is costly, the Board declined immediate rulemaking and directed staff to convene a TAC to evaluate MLD for Washington’s newborn screening panel.
The Washington State Board of Health on March 12 declined to add metachromatic leukodystrophy (MLD) directly to the state newborn screening (NBS) panel and instead directed staff to convene a Technical Advisory Committee (TAC) to evaluate the condition under the Board’s established criteria.
Board staff noted that MLD was added to the Recommended Uniform Screening Panel (RUSP) in December 2025 and that an updated petition from the MLD Foundation addressed prior concerns. Department staff explained that MLD is an autosomal recessive condition: a child must inherit two non-working copies of the relevant gene to develop the disease while carriers have a single non-working copy.
Megan McCrillis (Department of Health) told the Board that gene therapy for MLD is a single-treatment option estimated to cost about $4.25 million. She said early and timely treatment outcomes are highly favorable, with meeting materials noting survival differences between treated and untreated infants presented to the Board.
Several members, including Socia Love and Mike Ellsworth, indicated support for referring the condition to the TAC so experts can review prevalence, treatment availability and costs, insurance coverage, and ethical considerations. The motion (moved by Michael Ellsworth, seconded by Socia Love) directing staff to convene a TAC and return with recommendations passed unanimously.
Staff said the TAC would include representatives from the Health Care Authority and the Office of the Insurance Commissioner and would examine treatment access, cost and coverage, and implementation capacity before the Board considers rulemaking.