NewsHealth / March 25, 2019

Governor Signs First Bill, Adds Krabbe Disease To Newborn Screenings

Gov. Eric Holcomb signed the first legislation of the session. The bill adds Krabbe and two other diseases to Indianas list of medical screenings for newborns.2019 legislative session, Krabbe disease2019-03-25T00:00:00-04:00
Article origination IPBS-RJC
Governor Signs First Bill, Adds Krabbe Disease To Newborn Screenings

Andrea Clausen holds her son Bryce at the Statehouse.

(Jill Sheridan/IPB News)

Gov. Eric Holcomb signed the first legislation of the session. The bill adds Krabbe and two other diseases to Indiana’s list of medical screenings for newborns.

An Indianapolis baby named Bryce Clausen gave the bill momentum. The Clausen family brought the boy to committees, and told lawmakers his condition would have been identified earlier if they lived in another state.

Andrea Clausen says the legislation is Bryce’s legacy.

"We did all we could to make sure that no other Hoosier families had to go through this and had to lose their baby from a disease that could be treated," says Clausen. 

Krabbe disease is a genetic neurological condition that can be treated by an early stem cell transplant.

Clausen says it has been a whirlwind since the bill was first written, and says it was signed on Bryce’s 14-month birthday. 

"We never imagined it would happen this legislative session, because they put the bill in after the session had started," says Clausen. 

Pompe disease and Hurler syndrome are the other two conditions added to the state’s list of newborn screenings. 

Both the House and Senate passed the bill unanimously. 

 

 

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