Sponsors (14)
The bill aims to improve early detection, education, and donor-supported transplant options for pediatric liver disease—potentially improving survival—but does so without new funding and with risks of increased state and health‑system costs, donor and clinical burdens, and uneven reach or equity unless targeted resources and safeguards are provided.
Newborns and young children: adding routine direct‑bilirubin to newborn screening and related follow‑up would enable earlier diagnosis of biliary atresia and other cholestatic diseases, improving time‑sensitive treatment (e.g., Kasai surgery) and likely better transplant‑free survival.
Children needing liver transplants (and their families): expanding and supporting living‑donor liver transplantation could increase graft availability and improve short‑ and mid‑term graft and patient survival.
Parents/caregivers, pediatric clinicians, and schools: better provider education and clear materials for caregivers will improve recognition of early signs and prompt referrals, reducing diagnostic delays for pediatric liver disease.
State public health programs, hospitals, and taxpayers: adding direct‑bilirubin screening and required follow‑up would raise newborn‑screening program costs and likely require lab and IT upgrades, imposing new fiscal burdens on states and health systems.
Potential living donors and transplant centers: expanding living‑donor transplantation increases demand on donors and clinical resources (surgical capacity and long‑term donor follow‑up), creating safety, staffing, and infrastructure pressures.
Hospitals, HHS programs, and families: the bill authorizes education and studies but does not appropriate new funding, so HHS may need to divert existing resources or limit activities, delaying or reducing the effectiveness of interventions.
Based on analysis of 4 sections of legislative text.
Directs a GAO study on pediatric liver‑disease detection/transplant outcomes and requires HHS to run public education on early signs and living liver donation; no new funds authorized.
Official title: To direct the Secretary of Health and Human Services to carry out activities to promote screenings for liver diseases in newborns, and for other purposes.
Introduced September 15, 2025 by Jim Costa · Last progress September 15, 2025
Creates a federal study and a public education effort to improve early detection, referral, and living‑donor awareness for pediatric liver disease and tumors. The GAO must study federal efforts, transplant waitlist trends, and the cost‑effectiveness of adding direct‑bilirubin to newborn screening and report to Congress within one year. HHS (via HRSA, consulting CDC) must run plain‑language public education on early signs of pediatric liver disease and the option/safety of living liver donation, with GAO reporting on results within three years; no new funding is authorized for the education work.