Rep. Jim Costa, a Democrat from Fresno, and Republican Rep. Beth Van Duyne of Texas have introduced bipartisan legislation to improve early detection of pediatric liver disease and provide families with clearer information about living liver donations.
The proposed bill, H.H. 5355 — The Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act — is named after Ian Kalvinskas, a former intern for Costa who died of cancer in July 2025. Kalvinskas was diagnosed with liver cancer at age 15 in 2020 and received a liver transplant later that year. His cancer returned in November 2024, and he died the following summer.
“He cared deeply about healthcare reform, and knowing his life expectancy was short, he wanted ‘to make a difference now,’” Costa wrote in the Congressional Record on Friday, July 25. “His goal was to help write legislation that ensures pediatric patients receive fair consideration on the organ transplant waiting list.”
A week after visiting Capitol Hill, Kalvinskas passed away at a hospital near the Capitol.
“Even before his cancer recurred, one of Ian’s goals was to shape public policy to even the odds for children with life-threatening illnesses, especially those who need an organ transplant,” said Susan Hickman, mother of Ian Kalvinskas. “While Ian didn’t live to make that happen, he would be so gratified to know that this bill could help children with liver cancer and other diseases throughout the U.S. be diagnosed earlier, increasing their chances to live a long, full life.”
The act instructs the Government Accountability Office (GAO) to examine current efforts for early detection and treatment of pediatric liver tumors as well as trends in wait-list mortality for pediatric liver transplants. It also asks GAO to look into whether adding direct-bilirubin testing—an affordable tool—to state newborn screening panels would be cost-effective for identifying cholestatic liver disease.
Additionally, the bill creates a national education initiative led by the Health Resources and Services Administration along with the Centers for Disease Control. This initiative aims to give families clear information about early warning signs of pediatric liver disease and details on living liver donation options.
Rates of certain childhood liver diseases such as hepatoblastoma and biliary atresia are increasing in the United States. When diagnosis comes late, survival rates decline; biliary atresia is currently responsible for most infant liver transplants nationwide.
Costa stated that using simple and low-cost tools could prevent problems from becoming more severe.
