Committee backs ‘Maddie’s Law’ to add biliary atresia screening to newborn panel

Senators on the Appropriations Committee on Health and Human Services reported SB 1574 ("Maddie's Law") favorably after witnesses, including a parent of an affected child, described the condition and argued the screening change is both low-cost and lifesaving.

Sponsor Senator Bracey Davis said biliary atresia is a rare, time-dependent disease in which blocked bile ducts lead to rapid liver damage; surgical intervention within the first 30–45 days offers the best chance of delaying or avoiding liver transplant. The bill would require the Department of Health to add screening for biliary atresia into the existing newborn screening program using the same blood specimen already collected at birth.

Michael Beauchamp, identified as Maddie’s father, told the committee adapting the routinely performed total bilirubin test to include direct bilirubin is inexpensive. He provided on-record figures: of 240,000 births, 2,400 would fail an initial screen and require a retest at an estimated $3.01 per retest; he estimated that identifying about 24 cases could prevent several deaths and between 10 and 15 transplants and said the change would save the state an estimated $20–30 million annually. He also offered a tracking platform and training materials his foundation would donate to the state.

Senators asked no further questions and the committee voted to report the bill favorably. The Department of Health would be responsible for implementing any screening change and any costs or claims of net savings will be subject to agency fiscal analysis and federal requirements for changes to newborn-screening processes.