Congress directs study of pediatric liver disease screening and transplant disparities
H.R. 5355 — Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act · Filed by Jim Costa (D-CA) · 15 cosponsors · Introduced Sep 15, 2025 · Referred to committee
Your members of Congress
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What it does
This bill directs the Department of Health and Human Services to study and promote early detection of pediatric liver disease, particularly biliary atresia and hepatoblastoma, through newborn screening and public education. It requires a Government Accountability Office study on liver-transplant wait-list mortality, cost-effectiveness of adding bilirubin screening to newborn panels, and federal initiatives for early detection; it also mandates a public education campaign on early signs of pediatric liver disease and living liver donation, funded within existing HHS budgets.
Why we flagged it
The bill's operative mechanism is a study mandate and public education campaign on pediatric liver disease detection and organ donation. It contains no regulatory changes, appropriations, or private-sector carve-outs—only government information-gathering and awareness activities.
What the text implies
- The bill's findings section extensively documents Ian Kalvinskas's personal medical history and death, which may establish a precedent for naming federal health initiatives after recently deceased individuals rather than after the disease or condition being addressed.
- The GAO study on transplant wait-list mortality by race, insurance status, and geography may surface disparities in organ allocation that could prompt future regulatory or policy changes to the transplant system.
- The public education campaign on living liver donation, while framed as safety information, may increase pressure on families to consider donating organs from living relatives, with unclear long-term health consequences.
Section numbers refer to the bill text the analysis read — linked under Primary records below.
Who it affects
The bill creates no new restrictions on citizens and imposes no costs on the public. It directs government agencies to study a serious pediatric health problem and educate the public on early detection and organ donation—both of which serve children's health interests. Earlier detection of biliary atresia and liver cancer can improve survival outcomes.
Named in the bill
Department of Health and Human Services, Health Resources and Services Administration, Centers for Disease Control and Prevention, Government Accountability Office, National Comprehensive Cancer Control Program, Ian Kalvinskas
Where it stands
15 cosponsors: 8 Democrats, 7 Republicans.
- Sep 15, 2025 — Introduced · Congress.gov: “Introduced in House”
- Sep 15, 2025 — Referred to House Committee on Energy and Commerce · Congress.gov: “Referred to the House Committee on Energy and Commerce”
Dates and quoted wording are Congress.gov's action record; the timeline shows status changes, not every procedural step.
Money around this bill
1 lobbying clients named this bill on 1 disclosure filings across 1 quarter, Jun 2026 to Jun 2026. Those filings disclosed $50,000 in lobbying spend. A filing names 3 bills on average, so that figure is what each filing reported, not a share belonging to this bill.
More lobbying clients named this bill than 0% of bills with at least one filing.
Jim Costa, the sponsor, reported $855,144 in PAC receipts in the 2026 cycle.
- American Assn for the Study of Liver Diseases — $50,000 on 1 filing
Lobbying Disclosure Act filings through Jul 16, 2026. A filing shows who paid to lobby on a bill it names, not what changed.
How this was measured
Analysis — Quorum's AI read the bill text published by Congress.gov (4,733 characters) on Jun 3, 2026. Section numbers in the findings refer to that text, linked below; transparency and hidden-provision scores are compared against the median of 16,222 analysed bills.
Status and sponsors — Congress.gov's bill record — actions, committee referrals and cosponsors — loaded nightly. The timeline shows status changes, not every procedural action.
Money — Senate Lobbying Disclosure Act filings whose specific-issue field names this bill for quarters ending Jun 2026 to Jun 2026. A filing's amount is reported whole beside the median number of bills a filing names; it is never divided across them. PAC receipts are FEC-reported contributions to the sponsor's candidate committee in the 2026 cycle.
As of — lobbying records through Jul 16, 2026 · page rendered 2026-10-20.
“Congress directs study of pediatric liver disease screening and transplant disparities” QuorumCivic. https://share.quorumcivic.app/bill/119/hr5355 Report an error
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