119-HR5355

Bill is currently in: House
Path to Law
House Senate President

119th CONGRESS

1st Session

H. R. 5355

1. Short title
2. Findings
3. Pediatric liver disease outcomes and newborn screening panels
4. Public education program

1. Short title

This Act may be cited as the "Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act".

2. 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.

3. Pediatric liver disease outcomes and newborn screening panels

(a) GAO Study - The Comptroller General of the United States shall conduct a study on—

(1) - federally funded initiatives to improve early detection and treatment of pediatric liver tumors, including education programs for healthcare providers, as well as research to identify risk factors and innovative therapeutic strategies;

(2) - to the extent reliable data are available, what is known about trends in pediatric liver-transplant wait-list mortality, including a breakdown by geography, race, insurance status, diagnosis, and severity of illness; and

(3) - to the extent reliable data are available, what is known about the cost effectiveness of adding direct-bilirubin as a screening test for biliary atresia and other cholestatic liver diseases to State newborn-screening panels.

(b) Report to Congress - Not later than one year after the date of enactment of this Act, the Comptroller General shall transmit to Congress a report on the results of the study.

4. Public education program

(a) In general - The Secretary of Health and Human Services, acting through the Administrator for the Health Resources and Services Administration, in consultation with the Director of the Centers for Disease Control and Prevention (in this section referred to as the "CDC"), shall carry out a public education program under which the Secretary shall develop and disseminate plain-language materials on—

(1) - early signs of pediatric liver disease; and

(2) - the option and safety of living liver donation.

(b) Implementation - In carrying out the program under subsection (a), the Secretary may—

(1) - coordinate implementation of the program with programs of the CDC, including the National Comprehensive Cancer Control Program (or any successor campaign); and

(2) - in addition to the program referred to in paragraph (1), disseminate materials developed under this section through any other public-education initiative of the Department of Health and Human Services that promotes liver-disease prevention, pediatric cancer awareness, or living-organ donation.

(c) GAO report to Congress - Not later than 3 years after the date on which the Secretary initiates the program under subsection (a), the Comptroller General of the United States shall transmit to Congress a report on the results of the program.

(d) Funding - No additional funds are authorized to be appropriated for the purpose of carrying out this section.