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