INDIANAPOLIS — Newborn babies in Indiana likely will be tested, starting next year, for three additional disorders that often result in early childhood death when treatment is not provided or available.

Senate Enrolled Act 41 adds Krabbe disease, Pompe disease and Hurler syndrome to the 12 medical disorders for which infants already are required to be tested as soon as possible following birth.

The sponsor of the measure, state Rep. Doug Gutwein, R-Francesville, said he was inspired to mandate Krabbe disease testing after meeting Bryce Clausen, an Indianapolis 1-year-old who was not tested for Krabbe at birth, and now is ineligible for treatment following the onset of Krabbe symptoms.

Clausen is likely to die within the next year due to the rare genetic disease that destroys nerve cells in the brain and throughout the nervous system.

"Babies who have this debilitating disease often live in extreme pain," Gutwein said.

"Once symptoms show up, there is nothing their families can do to stop the condition from progressing. Children treated with stem cell transplants have shown some improvement in their quality of life, but the key is early detection."

Gutwein said he knows that adding Krabbe to the newborn screening panel will not eliminate the disease — "but it will give babies born with it and their families a chance to fight it," he said.

The nonpartisan Legislative Services Agency estimates that requiring testing for the three disorders will add approximately $10.70 to the state's $100 newborn screening fee.

That cost typically is covered by Medicaid or the health insurance program paying for the newborn's delivery.

The legislation, co-sponsored by state Sen. Ed Charbonneau, R-Valparaiso, was unanimously approved by both the Senate and the House.

It now goes to Republican Gov. Eric Holcomb to be signed into law.

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