Mahan: Saving young Hoosiers with ‘Bryce’s Bill’

Posted by: Lydia Kirschner  | Monday, April 8, 2019 10:35 am

The first law enacted by the Indiana General Assembly this session will help save the lives of Hoosier babies. I co-sponsored Senate Enrolled Act 41 to expand the scope of newborn screenings in order to identify more diseases and conditions, so that babies have a better chance of survival.

The law requires Krabbe disease to be added to the list of screenings Hoosier newborns receive shortly after birth. Krabbe is a rare genetic disease that destroys nerve cells in the brain and throughout the nervous system.

Even though there is no cure for Krabbe, there are treatment options available for children diagnosed before symptoms start to appear. This is why early detection through newborn screening is so critical. Once symptoms show up, a child’s life expectancy is 2 years of age and there is nothing their families can do to stop the condition from progressing, which can leave babies in extreme pain.

This legislation, also known as “Bryce’s Bill,” was inspired by Bryce Clausen, an Indianapolis 1-year-old, who was not tested for Krabbe at birth. Since he was not screened for the disease at birth, his diagnosis came too late for him to be eligible for treatment. Because of Bryce’s story, babies born with Krabbe or other genetic diseases can now receive help before it is too late.

Pompe disease and Hurler syndrome will also be added to the list of newborn screenings. Pompe is another genetic disease that inhibits the body from breaking down complex sugars, which can lead to muscle breakdown, and respiratory and cardiac problems. Hurler is a genetic disorder, which can result in organ damage, skeletal abnormalities and cognitive impairment. Adding Krabbe, Pompe, and Hurler to the newborn screening panel will not cure or eliminate them, but it will give babies born with these conditions and their families a chance to fight them.

By expanding newborn screenings, we hope to save more Hoosier babies by identifying these conditions as soon as possible and administering proper medical treatment. To learn more about Senate Enrolled Act 41, visit iga.in.gov. As session continues, let’s stay connected. For questions or input, please call 317-234-9499 or email H31@iga.in.gov.

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State Rep. Kevin Mahan (R-Hartford City) represents House District 31,

which includes all of Blackford County and portions of Delaware, Grant and Wells counties.

Click here to download a high-resolution photo.