Sponsors (12)
The bill increases early detection, education, and access pathways for pediatric liver disease and living donation—likely improving outcomes for some children—but does so without new funding, creating cost pressures on states/hospitals, potential donor and equity risks, and the possibility that benefits will be unevenly realized.
Newborns and infants (and their families) would gain earlier detection of biliary atresia and other cholestatic conditions if states add routine direct‑bilirubin to newborn screening, improving chances of timely Kasai surgery and better transplant‑free outcomes.
Children who need liver transplants (and their families) could have greater access to grafts and improved short‑ and mid‑term survival if living‑donor liver transplantation is expanded and potential donors receive clearer information.
Pediatric primary care providers and hospitals will get better education and federal evaluation of training/early‑detection initiatives, supporting earlier referrals and more effective use of federal research and training funds to improve pediatric liver outcomes.
State governments, hospitals, and taxpayers could face substantial added costs and required lab/IT upgrades to add routine direct‑bilirubin to newborn screening panels, straining public health budgets or prompting tradeoffs.
Potential living donors and transplant centers would face increased demand, surgical burden, and need for long‑term donor follow‑up if living‑donor transplantation is expanded, raising clinical resource and safety concerns.
Because the bill does not authorize new appropriations, HHS and state programs may need to divert existing resources or limit the scope of screening, education, and transplant support—delaying or reducing the practical benefits for affected children and families.
Based on analysis of 4 sections of legislative text.
Directs a GAO study of pediatric liver‑disease detection, transplant wait‑list trends, and direct‑bilirubin newborn‑screening cost‑effectiveness, and directs HHS to run public education on early signs and living liver donation.
Introduced September 15, 2025 by Jim Costa · Last progress September 15, 2025
Requires a government study of federal efforts to detect and treat pediatric liver tumors, transplant wait‑list outcomes (including disparities), and the cost‑effectiveness of adding direct‑bilirubin testing to newborn screening panels; report due to Congress within one year. Directs HHS (through HRSA, in consultation with CDC) to run a plain‑language public education program about early signs of pediatric liver disease and the safety/option of living liver donation, and requires a GAO report on program results within three years of program start. No new appropriations are authorized for the education program.