119-hr5355

[Congressional Bills 119th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5355 Introduced in House

    (IH) ]

<DOC>

119th CONGRESS
 1st Session
 H. R. 5355

 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.

_______________________________________________________________________

 IN THE HOUSE OF REPRESENTATIVES

 September 15, 2025

 Mr. Costa (for himself and Ms. Van Duyne) introduced the following 
 bill; which was referred to the Committee on Energy and Commerce

_______________________________________________________________________

 A BILL

 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.

 Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

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

SEC. 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.

SEC. 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.

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 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.
 <all>