Costa, Van Duyne Introduce Bipartisan Bill to Save Children’s Lives Through Early Detection of Pediatric Liver Disease

FRESNO, Calif. -  Congressman Jim Costa (CA-21) and Beth Van Duyne (TX-24) introduced H.R. 5355 – The Ian Kalvinskas Pediatric Liver Cancer Early Detection and Screening Act, bipartisan legislation to strengthen early detection of pediatric liver disease and give families clearer information about lifesaving living liver donations.
 

This legislation is named after Ian Kalvinskas, a former intern for the Office of Congressman Jim Costa. Sadly, he lost his life to cancer in July 2025. Learn more about Ian’s story.

“Families like Ian's shouldn't have to fight alone. They deserve a system that works for them and gives them every chance to live a full and healthy life,” said Congressman Costa. “This is about the gift of life and giving better opportunities for over 100,000 Americans awaiting an organ transplant every day. By supporting this legislation, we ensure that Ian's fight and legacy will live on in the lives of the children and families we will save."

“Far too many families only learn about pediatric liver disease when it’s already too late. By improving early detection and providing parents with clear information on lifesaving living liver donations, this bill gives children a better chance at survival and families hope in the darkest of times. I’m joining Congressman Costa in honoring Ian Kalvinskas’ legacy through this legislation, and I remain committed, as co-chair of the Congressional Organ Transplant Caucus, to advancing commonsense reforms that save lives,” said Congresswoman Van Duyne.
 
“Ian Kalvinskas had a short life. I was privileged to be his transplant doctor.  Despite his liver transplant, his rising star was snuffed out by the return of his liver cancer. However, in his 20 years he pursued and fulfilled his dream to change the world for the better – and did more than many of us accomplish in a much longer life” said Dr. Suzanne V. McDiarmid, MD, a distinguished professor of pediatrics and surgery at the David Geffen School of Medicine at UCLA. “In the last week of his life – spent in Congressman Costa’s office – his courage - as he told us his hopes for this legislation - made possible the Bill now introduced to Congress this week.  Over the years, I had seen for myself that same courage as he fought his own battles. It was quite remarkable to witness in one so young – courage combined with action that transcended his own suffering. He inspired me then – and still does – to stand taller and try harder to do what is right to protect the children of our Nation.”
 
“Ian was keenly aware that so many children in the U.S. and elsewhere would not have had those advantages. 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.
 
BACKGROUND
Pediatric liver diseases like hepatoblastoma and biliary atresia are on the rise. Cases of liver tumors in children are rising, and survival rates fall sharply when diagnosis comes too late, especially for teenagers, and when the disease has already spread. Biliary atresia, a rare but devastating condition that affects roughly one in every 12,000 newborns, is the leading cause of infant liver transplants. Simple, inexpensive tools can make a significant difference.
 
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. It also establishes a national education initiative led by Health Resources and Services Administration (HRSA), in conjunction with the Centers for Disease Control (CDC), to provide families plain-language information on early warning signs and the option and safety of living liver donation. 
 
By providing states with the data they need, without imposing a federal mandate, the legislation supports earlier intervention for infants, including timely Kasai procedures that can save lives and reduce wait-list mortality. At the same time, it ensures families nationwide receive consistent, evidence-based information on living liver donation to expand the pool of available organs and promote greater equity in care.
 
This legislation builds on Costa and Van Duyne’s work as co-chairs of the Congressional Organ Transplant Caucus to strengthen patient safety and improve transplant outcomes.