Summary
The Washington State Department of Health (Department) tests all newborns for rare but treatable conditions using a small blood sample from the baby’s heel. This is called newborn screening. State law requires the State Board of Health (Board) to set the rules for this program, including which conditions are tested. In 2025, the Board approved adding Wilson disease to the screening list. This update is on hold until the Department secures funding to support current screening services.
For More Information
Statutory Authority: RCW 70.83.050
Board Contact: Molly Dinardo, molly.dinardo@sboh.wa.gov
Department of Health Contact: Megan McCrillis, megan.mccrillis@doh.wa.gov and Samantha Sprague, samantha.spragure@doh.wa.gov
To receive future updates on newborn screening, please complete the NBS interest form online.
Background
All babies born in Washington State are screened shortly after birth. The Washington State Department of Health (Department) conducts this testing using a small blood spot sample collected from a baby’s heel.
State law (RCW 70.83.050) requires the Washington State Board of Health (Board) to set the rules for newborn screening. This includes the list of conditions that all newborns must be tested for, called the mandatory screening panel (WAC 246-650-020). In 2025, the Board approved adding Wilson disease to the state screening panel. For more information about the Board and its process to add new conditions to the screening panel, you can find more information on the Board’s newborn screening webpage.
Wilson Disease Review Process
July 31, 2024: The Board received a formal request to add Wilson disease. Wilson disease is a rare inherited condition that causes copper to build up in the body, which can damage the liver, brain, and other organs.
June 17, 2025: The Board convened a technical advisory committee (TAC) to review the condition against its newborn screening criteria, including diagnosis, treatment, screening options, costs, and system readiness.
August 20, 2025: The Board approved adding Wilson disease to the rule and directed staff to begin rulemaking.
Screening Implementation Delay
Adding a new condition requires more than Board approval. Before screening can begin:
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The Department must receive legislative approval to increase the newborn screening fee, which covers testing, follow-up care, and program costs.
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The Health Care Authority, which covers about 40% of births in Washington State, must update Medicaid payment rates.
The newborn screening program charges a one-time screening fee per baby to cover screening for the 35 conditions on the mandatory screening panel. This includes laboratory testing, repeat screens, and medically necessary follow-up care to ensure timely identification and response. The fee also supports specialty care clinics and a state-funded courier service for transporting initial specimens.
The newborn screening program is currently facing a significant budget shortfall. In 2026, the Department requested a fee increase of about $70 per baby to address the shortfall, but the final budget included only a $15 increase.
Because of this gap, the Department is focusing on maintaining current screening services rather than adding new tests.
Temporary Pause on Policy Work
Due to constraints in funding and staff capacity:
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As part of the Board’s public meeting on April 8, 2026, the Department asked the Board to pause certain policy work
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In response, the Board approved a temporary pause on certain NBS policy activities
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During this time, the Board will not begin new rulemaking activities for newborn screening
What This Means for Wilson Disease
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Implementation of Wilson disease screening is delayed.
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The Department will not move forward with a request for funding to screen for Wilson disease, and the Board will not move forward with rulemaking at this time.
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The pause affects newborn screening policy development, not care delivery. All newborns in Washington State will continue to be screened for 35 conditions currently on the panel.
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The current priority is to maintain existing newborn screening services.
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Updates will be shared on the Board’s newborn screening webpage and this rulemaking webpage as more information becomes available.
