Newborn Screening - Adding OTCD

Summary

The Washington State Department of Health (Department) tests all babies born in Washington for rare but treatable health issues. The Department completes this test using a small blood spot sample collected from a baby’s foot. This process is also called “newborn screening.” Washington law requires that the State Board of Health (Board) create rules for newborn screening. This includes the list of conditions that all babies are tested for after birth. In 2021, the Board approved a new condition for the Department to add to the list of current tests. This condition is Ornithine Transcarbamylase Deficiency (OTCD).

For More Information

Statutory Authority: RCW 70.83.050
State Board of Health Contact: Molly Dinardo, molly.dinardo@sboh.wa.gov
Department of Health Contact: John Thompson, john.thompson@doh.wa.gov

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Additional Background

Chapter 246-650 WAC specifies the list of conditions for which all newborns must be screened in Washington. On February 4, 2022, the Board filed a CR-101, Preproposal Statement of Inquiry, for chapter 246-650 WAC. The CR-101 announces to the public that the Board is considering adding Ornithine Transcarbamylase Deficiency (OTCD) to the list of mandatory conditions for newborn screening conducted by the Department of Health (Department). 

The Board and Department have been unable to proceed with rulemaking because additional funding is necessary to increase the state newborn screening fee to cover costs associated with including a new condition on the panel. Since the CR-101 filing, the Department’s Newborn Screening Program requested a fee increase from the Legislature to include screening for OTCD in the state budget. 

During the 2023 legislative session, the Legislature did not include funding in their final budget to increase the newborn screening fee for OTCD. As a result, rulemaking to add OTCD will be put on hold until funding is available in the budget and other system partners also have the funding to cover the costs of new screening requirements.

The Department and Board staff will keep interested parties updated on any developments.

This project was announced on November 28, 2023, and can be found under WSR-22-05-012 (CR-101).

Related Links: Meeting Materials

October 13, 2021, Public Meeting

April 12, 2023, Public Meeting