Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act

Bill Number

H.R. 5355

Origin Chamber

House

Congress

119th Congress, Session 1

Policy Area

Health

Status

Introduced

Latest Action

2025-09-18: Sponsor introductory remarks on measure. (CR H4418)

Last Updated

2026-05-14T08:08:05Z

AI-Generated Summary

Purpose

This legislation aims to improve early detection and outcomes for pediatric liver diseases, including cancers like hepatoblastoma and conditions like biliary atresia (a blockage of the bile ducts in newborns). It honors Ian Kalvinskas, a teenager who died from liver cancer, by directing federal studies and public education efforts to raise awareness, promote newborn screenings, and encourage living organ donations.

Key Provisions

• Congressional Findings: Outlines the rising incidence of pediatric liver tumors (increasing about 2% yearly, now ~1.7 cases per million children), the benefits of early intervention (e.g., survival rates double for biliary atresia if treated before 60 days), effective screening tools like direct-bilirubin tests in newborn blood tests, and challenges in organ transplants (e.g., 1 in 10 infants die waiting).
• GAO Study on Pediatric Liver Disease (Sec. 3): Requires the Government Accountability Office (GAO, an independent agency that audits federal programs) to examine:
• Federal efforts to detect and treat pediatric liver tumors, including provider education and research on risks and treatments.
• Trends in deaths among children waiting for liver transplants, broken down by location, race, insurance, diagnosis, and illness severity (using available data).
• The cost-effectiveness of adding direct-bilirubin screening (a simple blood test for liver issues) to state newborn screening programs for biliary atresia and similar diseases.
• A report to Congress must be submitted within one year of enactment.
• Public Education Program (Sec. 4): Directs the Secretary of Health and Human Services (HHS), through the Health Resources and Services Administration (HRSA, which funds health services), in consultation with the Centers for Disease Control and Prevention (CDC), to create and distribute easy-to-understand materials on:
• Early warning signs of pediatric liver disease (e.g., jaundice or poor feeding in newborns).
• The safety and benefits of living liver donation (where a healthy person donates part of their liver, which regrows).
• Implementation may involve partnering with CDC's cancer control programs or other HHS initiatives on liver health, cancer awareness, and organ donation.
• GAO must report on the program's effectiveness to Congress within three years of its start.
• No new funding is authorized; it uses existing resources.

Significant Changes to Existing Law

This bill does not mandate widespread changes like requiring all states to add new screenings to newborn panels (which are routine blood tests done shortly after birth to detect various disorders). Instead, it introduces additive measures: a targeted GAO study on screening cost-effectiveness and federal education efforts. It builds on existing programs (e.g., CDC's cancer initiatives) without altering transplant laws or allocation rules directly, though it highlights gaps in waitlist mortality and living donations.

Potential Impacts

• Government Agencies: Increases workload for HHS (HRSA and CDC) to develop and share educational materials using current budgets, potentially straining resources. GAO will conduct analyses, informing future policy without direct costs. Could lead to recommendations for expanded federal research or screening grants.
• Citizens: Improves awareness for parents and caregivers about liver disease signs, potentially enabling earlier medical referrals and better survival rates (e.g., from 60% to higher with timely treatment). Encourages living donations, which could shorten wait times for children needing transplants. Newborns and families in underserved areas (by race, geography, or insurance) may benefit most from any future screening expansions.
• International Relations: Minimal impact, as it focuses on U.S. domestic health programs and data; no provisions affect global organ sharing or foreign policy.

Main Stakeholders Affected

• Children and Families: Newborns at risk for liver diseases, pediatric cancer patients, and families facing transplant waits; benefits from education and potential early detection.
• Healthcare Providers: Pediatricians and specialists gain tools for education and referral, with emphasis on recognizing early signs like elevated bilirubin (a liver waste product).
• Organ Donors and Recipients: Living donors (often family members) are highlighted for their role in expanding the organ pool; transplant centers may see advocacy for exceptions in listing children.
• Government and Public Health Entities: HHS, HRSA, CDC, and GAO handle implementation and evaluation; states managing newborn screening programs could face indirect pressure for updates based on the GAO study.
• Advocacy Groups: Organizations focused on pediatric cancer, rare diseases, and organ donation (e.g., those inspired by cases like Ian Kalvinskas) stand to amplify awareness.

Notable Legal, Constitutional, or Political Implications

• Legal: Relies on existing federal authority under public health laws (e.g., for education and studies via HHS/CDC), with no new mandates that could face legal challenges like state sovereignty over newborn screenings. The no-new-funding clause avoids budget disputes but limits scope.
• Constitutional: No significant issues; promotes general welfare through health education without infringing on individual rights or federalism (states retain control over screening panels).
• Political: Highlights bipartisan support (introduced by Reps. Costa and Van Duyne) and personal stories to build momentum for pediatric health funding. Could influence future appropriations for liver research or screenings, emphasizing equity in transplant access amid debates on healthcare disparities. The GAO reports provide a neutral basis for evidence-based policy changes without partisan mandates.

This summary was generated by AI and may contain inaccuracies. Refer to the official source document for the authoritative text.

Sponsor

Rep. Costa, Jim [D-CA-21]

Cosponsors (11)

Rep. Van Duyne, Beth [R-TX-24], Del. Norton, Eleanor Holmes [D-DC-At Large], Rep. Huizenga, Bill [R-MI-4], Rep. Bresnahan, Robert P. [R-PA-8], Rep. Wasserman Schultz, Debbie [D-FL-25], Rep. Gottheimer, Josh [D-NJ-5], Rep. Tlaib, Rashida [D-MI-12], Rep. Bacon, Don [R-NE-2], Rep. Dingell, Debbie [D-MI-6], Rep. Mackenzie, Ryan [R-PA-7], Rep. Davis, Donald G. [D-NC-1]

Recent Actions

• 2025-09-18: Sponsor introductory remarks on measure. (CR H4418)
• 2025-09-15: Referred to the House Committee on Energy and Commerce.
• 2025-09-15: Introduced in House
• 2025-09-15: Introduced in House

Bill Versions

• Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act — issued 2025-09-15 — PDF (5 pages)