Get Full Government Meeting Transcripts, Videos, & Alerts Forever!
Get email alerts on the Newborn Screening topic
No spam. Unsubscribe anytime.
Committee hears bill to establish advanced universal newborn screening and raise funding cap
Summary
House Bill 2,399 would establish an advanced universal newborn screening program in KDHE, expand the conditions screened in alignment with the federal Recommended Uniform Screening Panel and raise the statutory spending cap on the newborn screening fee fund to $5 million to sustain recent program expansions.
The House Health and Human Services Committee heard House Bill 2,399, which would establish an advanced universal newborn screening program administered by the Kansas Department of Health and Environment and increase the statutory cap on the newborn screening fee fund to $5,000,000.
Carly reviewed the bill's provisions: creation of an advanced newborn screening program in KSA 65-180, authority for the secretary of health and environment to identify conditions to include on the screening panel (including conditions on the federal Recommended Uniform Screening Panel, or RUSP), a registry and follow-up program, reimbursement and purchase options for medically necessary food treatment products, and related amendments to KSA 65-181 and 65-183. The bill would take effect upon publication in the Kansas Register.
Drew Duncan, Screening and Surveillance Section Director at KDHE, said Kansas currently screens for 36 of 38 RUSP core conditions, plans to bring the 37th condition online this year and the 38th in fiscal 2026, and conducted more than 35,000 screens in 2023. He testified that per-screen costs range from roughly $60 up to $203 in some states and that the newborn screening program's implemented expansions since 2020 were enabled by nonrenewable federal grants and recent budget provisos; KDHE seeks a statutory cap increase to $5,000,000 so the program can maintain and continue incremental growth without reverting to temporary fixes.
Duncan said underfunding risks reducing activities gained from provisos and could limit Kansas' ability to add conditions as the RUSP expands. He described that the newborn screening program is provided at no cost to families, operates as an opt-out screen unless a family declines for recognized reasons, and that the proposed cap increase would reflect recent provisos rather than automatically expanding spending beyond legislative appropriation.
Heather Brom of Kansas Action for Children urged stronger steps, asking the committee to consider removing the budget cap entirely to give the program flexibility to add new tests and expand family outreach without repeated provisos. Committee members asked about current caps and provisos; KDHE said the statutory cap is $2.5 million but recent provisos have funded more and the bill requests $5 million in statute to reflect recent spending levels.
Committee members also discussed how treatment products are funded: KDHE testified that treatment products such as PKU formula are funded through a separate state general fund allocation (about $199,000 annually for PKU formula) and Title V Maternal and Child Health funds for broader special health care needs supports; the newborn screening fee fund primarily covers screening operations and follow-up.
No committee vote was taken during the hearing; agency staff said they would work with the committee on potential amendments.
