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Bill would require Washington to consider federal newborn-screening recommendations and create dedicated screening fee account

February 14, 2025 | Health Care & Wellness, House of Representatives, Legislative Sessions, Washington


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Bill would require Washington to consider federal newborn-screening recommendations and create dedicated screening fee account
House Bill 1697 would direct the State Board of Health to reestablish Washington's newborn-screening panel to include existing state-mandated screens and conditions listed on the federal Recommended Uniform Screening Panel (RUSP) as of Jan. 1, 2025, and to adopt procedures and timelines for evaluating new RUSP additions.

Committee staff said the bill requires the board to conduct feasibility reviews and, when appropriate, add new conditions to Washington's screening panel by rule within 12 months of a RUSP addition; the board must avoid duplicating federal research and to consult the Health Care Authority on impacts to state-purchased health programs. The bill also would create a non-appropriated newborn-screening revenue account to preserve fees collected for newborn-screening purposes.

Supporters, including rare-disease advocates and industry representatives, told the committee that faster state adoption of RUSP recommendations could shorten diagnostic delays and improve outcomes for infants with treatable conditions. Catherine Mahoney of Ultragenyx and Max Brown of the Northwest Rare Disease Coalition said federal RUSP review already involves multidisciplinary scientific and ethical review and that Washington should streamline state adoption of conditions the federal panel has vetted.

Medical specialists who care for metabolic disorders urged care to accompany screening: Dr. Terry Ko, a biochemical geneticist, said newborn screening is effective but that adding conditions requires adequate clinical capacity for follow-up diagnostic testing, treatment and long-term monitoring. Dr. Ko also noted that Washington's current clinic-subsidy fee has not been adjusted since 2010 and said the state needs funding and staffing to ensure timely follow-up for positive screens.

The State Board of Health testified with concerns. The board said it recently revised its internal review process and recommended a two-year review window for new RUSP conditions. Board staff told the committee the bill's one-year requirement could be difficult to meet without additional staff and resources, and that the bill would limit the board's flexibility in adapting review criteria. The board also warned that the proposed petition process would duplicate the Administrative Procedure Act's standard petition procedures.

No formal action was taken during the hearing. Sponsors and the board said they would continue discussion on timelines, staffing and fee levels so that expanded screening can be matched with lab capacity and clinical follow-up.

Ending: Advocates urged the committee to move the bill to speed adoption of federally vetted conditions, while the State Board of Health requested more time and resources to carry out a shortened review timeline.

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