Findings

Congress finds that— (1) the life of California teenager Ian Kalvinskas—who received a liver transplant, fulfilled his goal of interning on Capitol Hill, and died from cancer on June 27, 2025—demonstrates the urgent need for earlier detection of pediatric liver disease, lifelong follow-up, and wider access to donor organs; (2) pediatric primary liver tumors are among the fastest-rising childhood cancers in the United States, with hepatoblastoma increasing by approximately 2 percent per year to and now approaching 1.7 cases per million children; although the overall 5-year relative survival rate from a pediatric primary liver tumor is about 77 percent, survival falls below 60 percent for adolescents and for tumors diagnosed with distant metastases; (3) biliary atresia, a neonatal malformation of the bile ducts occurring in roughly 1 in 12,000 live births and the leading indication for infant liver transplantation, shows transplant-free survival that roughly doubles when a Kasai portoenterostomy is performed before 60 days of life; (4) clinically validated early-warning tools can detect cholestatic liver disease in time for therapeutic intervention, including— (A) routine direct-bilirubin measurement in the newborn heel-stick panel, which when used in multi-center, United States pilots detected 100 percent of biliary-atresia cases with minimal false positives; and (B) improved education of pediatric primary care providers to be alert to early warning signs of biliary atresia with expedited referral to pediatric liver specialists; (5) despite recent liver donor allocation reforms, more than 1 in 10 infants and more than 1 in 20 older children on the United States liver-transplant wait list die before receiving a graft; (6) living-donor liver transplantation expands the pediatric organ pool and delivers equivalent or superior 1-year, 3-year, and 5-year graft and patient survival compared with deceased-donor grafts; and (7) many children with rare liver diseases, including liver cancer, are only able to receive timely transplants through physician advocacy to petition for exceptions to the standard listing practices.