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 approxi-
mately 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 thera-
peutic intervention, including— 
(A) routine direct-bilirubin measurement in 
the newborn heel-stick panel, which when used 
in multi-center, United States pilots detected 
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100 percent of biliary-atresia cases with mini-
mal false positives; and 
(B) improved education of pediatric pri-
mary 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 re-
forms, more than 1 in 10 infants and more than 1 
in 20 older children on the United States liver-trans-
plant 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, in-
cluding liver cancer, are only able to receive timely 
transplants through physician advocacy to petition 
for exceptions to the standard listing practices. 
SEC. 3. PEDIATRIC LIVER DISEASE OUTCOMES AND NEW-
BORN 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, in-
cluding education programs for healthcare providers, 
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as well as research to identify risk factors and inno-
vative therapeutic strategies; 
(2) to the extent reliable data are available, 
what is known about trends in pediatric liver-trans-
plant wait-list mortality, including a breakdown by 
geography, race, insurance status, diagnosis, and se-
verity 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 new-
born-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. 
SEC. 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 con-
sultation with the Director of the Centers for Disease Con-
trol 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— 
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(1) early signs of pediatric liver disease; and 
(2) the option and safety of living liver dona-
tion. 
(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 suc-
cessor campaign); and 
(2) in addition to the program referred to in 
paragraph (1), disseminate materials developed 
under this section through any other public-edu-
cation initiative of the Department of Health and 
Human Services that promotes liver-disease preven-
tion, pediatric cancer awareness, or living-organ do-
nation. 
(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. 
Æ 
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