Gov. Holcomb signs Indiana’s first new law approved by 2019 General Assembly – Journal Review

INDIANAPOLIS — The first new law signed this year by Republican Gov. Eric Holcomb adds checks for three additional health disorders to the medical screening panel administered to all babies born in Indiana.

Senate Enrolled Act 41 requires testing for Krabbe disease, Pompe disease and Hurler syndrome beginning July 1, 2020, in addition to the 12 medical disorders for which infants already are required to be tested as soon as possible following birth.

The law was inspired by 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, who attended the signing ceremony in the governor’s Statehouse office, 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.

Sponsors of the measure, which passed both the House and Senate unanimously, included state Sen. Ed Charbonneau, R-Valparaiso, chairman of the Senate Committee on Health and Provider Services.

“I am extremely grateful to the Clausen family for all of their hard work in championing the bill,” Charbonneau said.

“During such a difficult time, the family selflessly chose to fight for legislation to ensure no child has to experience what Bryce has endured. I am hopeful this law has a positive impact on our communities and state.”

The nonpartisan Legislative Services Agency estimates that 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.

Here’s a look at what was signed into law in 2018 in Indiana


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