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Board declines to add MPS II to Washington’s newborn screening panel, citing limited long‑term outcome data
Summary
After TAC review and discussion of limited evidence on long‑term outcomes for enzyme replacement therapy, the Board voted unanimously not to add Mucopolysaccharidosis type II (MPS II) to the state newborn screening panel at this time.
The Washington State Board of Health voted unanimously on April 8, 2026, not to add Mucopolysaccharidosis type II (MPS II) to the state’s newborn screening panel after a Technical Advisory Committee review raised concerns about limited long‑term outcome data.
Department and Board staff summarized the TAC’s recommendation and highlighted that, while the FDA has approved an enzyme replacement therapy (ERT) for MPS II, evidence about long‑term benefits of initiating treatment in infancy remains limited. Megan McCrillis of the Department said data for rare conditions often require years of follow‑up and that it was uncertain when sufficient additional evidence would be available. "Broader screening identifies more diverse cases than clinical detection alone," McCrillis said, noting international screening programs may provide additional data.
TAC members’ voting was split at the advisory level, with several members recommending reconsideration after additional evidence accrues. Board members, including Member Steve Kutz, urged patience to assess how new therapies affect outcomes before adding MPS II to the state panel.
The Board’s final motion, moved by Member Peter Browning and seconded by Member Steve Kutz, found that MPS II should not be considered for addition to the Washington newborn screening panel at this time. The motion passed unanimously.
