The Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act, named for the young liver cancer victim and former intern of Rep. Jim Costa, aims to help children with liver disease. Photo via Adrian Kalvinskas Facebook page
Written by Ben Hensley
Rep. Jim Costa (D-Fresno), alongside Republican Beth Van Duyne of Texas, have joined together on bipartisan legislation to strengthen early detection of pediatric liver disease, aiming to provide families clearer information about living liver donations.
The bill, H.H. 5355 — also known as The Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act — is named after a former Costa intern who died of cancer in July 2025. Kalvinskas, who grew up in Pasadena, was diagnosed with liver cancer at age 15 in 2020, and, later that year, underwent a liver transplantation. Despite this, the cancer recurred in November 2024 before he succumbed to the illness this past 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 traveling to Capitol Hill, Kalvinskas died in a D.C. Hospital — just blocks from 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 Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act directs the Government Accountability Office (GAO) to study efforts to improve early detection and treatment of pediatric liver tumors, trends in pediatric liver-transplant wait-list mortality and the cost-effectiveness of adding simple tools, such as direct-bilirubin testing, to state newborn-screening panels for cholestatic liver disease, according to a news release.
It also establishes a national education initiative led by Health Resources and Services Administration, in conjunction with the Centers for Disease Control, to provide families plain-language information on early warning signs and the option and safety of living liver donation.
Pediatric liver diseases, including hepatoblastoma and biliary atresia, are on the rise, with cases of liver tumors in children rising and survival rates falling when diagnosis comes too late. Biliary atresia affects one in every 12,000 newborns and is the leading cause of infant liver transplants.
Costa said that simple, inexpensive tools can help solve problems before they become too severe.
The national library of medicine reports that pediatric liver transplant cases see 82% survival rate five years after transplant. Outcomes have improved steadily over the last 15 years due to post-transplant care.
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