State Representative
As lawmakers, we consider many factors when proposing new bills. Often, the best legislation is inspired by Hoosiers and the issues they face every day. This session, I was moved by the stories of families advocating for legislation to strengthen healthcare and screening standards in Indiana.
I sponsored the first bill to be signed into law this year, which adds Krabbe disease, Pompe disease and Hurler syndrome to the list of genetic disorders that newborn children undergo screening. Hoosier newborns are already screened for many diseases including sickle cell anemia, cystic fibrosis, hearing loss and critical congenital heart disease. This new law is called “Bryce’s Bill” after Bryce Clausen, a 1-year-old from Indianapolis who was diagnosed with Krabbe and recently passed away.
Krabbe disease is a severe genetic neurological condition with no cure. When left untreated, infants who suffer from it have a life expectancy of two years, and once symptoms appear, it is too late for treatment. Bryce’s shortened life highlighted the need to screen newborns for these diseases, and through this law, Indiana hospitals can catch and treat these additional diseases more quickly. Those babies diagnosed and treated early have better chances of living longer, healthier lives.
Another piece of legislation I supported to help save lives is “Josslyn’s Law.” The law is named after Josslyn Gee, an infant who lost her life to sepsis, which can be caused from a small infection or mosquito bite and appears as flu-like symptoms and can be fatal if left untreated.
After we heard heartbreaking testimony from Josslyn’s family and the Sepsis Alliance, it was clear that new guidelines were needed to ward against sepsis. Josslyn’s death could have been prevented but her condition went unnoticed until it was too late. This legislation would create the Sepsis Treatment Protocol Task Force to develop best practices and recommendations to the Indiana State Department of Health. Improving sepsis management by creating reporting requirements for hospitals, gathering information about treatment and determining best practices will help save lives.
Hoosier healthcare can be improved with both pieces of legislation. As a father myself, it is horrible to imagine losing one of my children because a serious disease went overlooked. With a stronger focus on identifying these diseases sooner, we can help others live healthier and longer lives.
If you have any questions or comments on these bills or other issues, please do not hesitate to contact me at h29@iga.in.gov or 317-232-9833.
State Rep. Chuck Goodrich (R-Noblesville) represents House District 29, which includes portions of Hamilton County.