HR5355-119

What This Bill Does

The Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act focuses on earlier detection of pediatric liver disease and better access to pediatric liver transplantation. Its findings cite Ian Kalvinskas's liver transplant and death from cancer in 2025, rising pediatric primary liver tumor incidence, lower survival for adolescents and metastatic disease, biliary atresia incidence of roughly 1 in 12,000 live births, better transplant-free survival when Kasai portoenterostomy occurs before 60 days, U.S. pilots in which direct-bilirubin newborn screening detected all biliary atresia cases with minimal false positives, and pediatric liver-transplant wait-list deaths. GAO must study federally funded early detection and treatment initiatives, provider education, risk-factor and therapeutic research, wait-list mortality by geography, race, insurance, diagnosis, and severity, and cost effectiveness of adding direct-bilirubin screening to state newborn-screening panels. HHS, through HRSA and in consultation with CDC, must develop and distribute plain-language materials on early signs of pediatric liver disease and the option and safety of living liver donation, using CDC cancer programs or other HHS education initiatives. GAO must report on the education program within three years, and no additional funds are authorized.

Who Benefits and How

Children with pediatric liver disease benefit from federal attention to direct-bilirubin newborn screening, earlier referral, and living liver donation education. Pediatric liver cancer patients benefit from a GAO review of federally funded tumor detection, risk-factor, and therapeutic research initiatives. Living liver donors benefit from public materials explaining the option and safety of living liver donation. Pediatric liver specialists benefit from better provider education about biliary atresia warning signs and early referral.

Who Bears the Burden and How

GAO analysts must study early detection programs, transplant wait-list mortality, direct-bilirubin screening cost effectiveness, and program results. Health Resources and Services Administration staff must develop and distribute plain-language education materials without new authorized funding. CDC cancer program staff must consult on educational materials and possible dissemination through national cancer-control programs. State newborn-screening administrators may face pressure to evaluate adding direct-bilirubin screening to newborn panels.

Key Provisions

• Requires GAO to study pediatric liver tumor detection, treatment initiatives, and provider education.
• Requires analysis of pediatric liver-transplant wait-list mortality by geography, race, insurance, diagnosis, and severity.
• Requires GAO to assess direct-bilirubin newborn screening cost effectiveness for biliary atresia and cholestatic liver disease.
• Requires HRSA, with CDC consultation, to educate the public on pediatric liver disease warning signs and living liver donation.
• Provides no additional authorization of appropriations for the education program.