What does PEDIATRIC LIVER DISEASE OUTCOMES AND NEWBORN SCREENING PANELS. of Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act do?

This section mandates a study by the Comptroller General of the United States regarding pediatric liver disease. The study will examine federally funded initiatives for early detection and treatment of pediatric liver tumors. The study will analyze trends in pediatric liver-transplant wait-list mortality, if reliable data are available. The study will assess the cost-effectiveness of adding direct-bilirubin to state newborn screening panels for biliary atresia and other cholestatic liver diseases, if reliable data are available. A report detailing the study's results must be submitted to Congress within one year of the Act's enactment.

What does PUBLIC EDUCATION PROGRAM. of Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act do?

This section establishes a public education program regarding pediatric liver disease and living liver donation. The Secretary of Health and Human Services, through the Health Resources and Services Administration, will develop and disseminate plain-language materials on early signs of pediatric liver disease and the option and safety of living liver donation. The Secretary may coordinate the program with CDC programs, including the National Comprehensive Cancer Control Program. Materials developed under this section can be disseminated through other Department of Health and Human Services initiatives related to liver-disease prevention, pediatric cancer awareness, or living-organ donation. The Comptroller General of the United States must submit a report to Congress on the program's results within three years of the program's initiation. No additional funds are authorized for carrying out this section.

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Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act

Q: What does Preamble of Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act do?

This bill, formally titled '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,' aims to direct the Secretary of Health and Human Services to undertake activities related to newborn liver disease screenings.

Q: What does SHORT TITLE. of Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act do?

This Act is formally titled the Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act.

Q: What does FINDINGS. of Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act do?

This section outlines findings related to pediatric liver disease and transplantation. It highlights the case of Ian Kalvinskas, demonstrating the need for earlier detection, lifelong follow-up, and increased access to donor organs. Pediatric primary liver tumors are identified as a rapidly increasing childhood cancer, with survival rates lower for adolescents and those with distant metastases. Biliary atresia, a leading indication for infant liver transplantation, shows improved outcomes with early surgical intervention. Clinically validated tools, such as routine direct-bilirubin measurement and improved provider education, can aid in early detection of cholestatic liver disease. A significant number of infants and children on the liver transplant waitlist die before receiving a graft. Living-donor liver transplantation is presented as a way to expand the organ pool and improve survival rates. Physician advocacy is sometimes required to secure timely transplants for children with rare liver diseases.

Last updated: 9/18/2025 · Introduced: 9/15/2025

Author: Jim Costa (D-CA)

TL;DR (AI)

This bill directs the Comptroller General to study federally funded initiatives for pediatric liver disease early detection and treatment, analyzing wait-list mortality and the cost-effectiveness of newborn screening for biliary atresia.
It establishes a public education program to raise awareness about early signs of pediatric liver disease and the possibility of living liver donation.
The bill requires a report to Congress detailing the findings of the pediatric liver disease study and an evaluation of the public education program's effectiveness.

119th Congressin committeeOfficial page

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