This bill directs the Secretary of Health and Human Services to promote screening and earlier detection of pediatric liver diseases. It requires the Government Accountability Office (GAO) to study federally funded efforts to detect and treat pediatric liver tumors; to report on trends in pediatric liver-transplant wait-list deaths by geography, race, insurance, diagnosis, and illness severity; and to study the cost-effectiveness of adding direct-bilirubin testing to State newborn-screening panels. The GAO must report to Congress within one year. The bill also directs HHS, through the Health Resources and Services Administration and in consultation with the CDC, to run a public education program that develops and shares plain-language materials on early signs of pediatric liver disease and on the option and safety of living liver donation. HHS may work with CDC programs and other HHS initiatives to distribute materials. The GAO must report on the education program three years after it begins. Section 4(d) of the bill says no additional funds are authorized for the public education section.
Parents, pediatricians, and newborn-care providers could see new plain-language information about early signs of pediatric liver disease and about living liver donation. The GAO study could inform whether direct-bilirubin is added to newborn screening panels, but the bill does not itself change State newborn screening rules or require immediate screening changes. HHS will coordinate materials with CDC programs and other HHS initiatives.
Section 4(d) states no additional funds are authorized to be appropriated for the public education program. The bill does not include specific funding amounts or new appropriations for the GAO study or other activities. No publicly available information.
The bill's findings say earlier detection can improve outcomes for infants and children with liver disease. It cites rising rates of pediatric primary liver tumors, the importance of timely treatment such as Kasai portoenterostomy for biliary atresia, pilot studies where direct-bilirubin testing detected biliary atresia, and the role of living-donor liver transplants in expanding the organ pool and improving survival. Supporters see GAO study and education as steps to speed diagnosis, improve follow-up, and expand donor options.
No publicly available information.