STATEHOUSE (March 9, 2018) — Gov. Eric Holcomb signed State Rep. Douglas Gutwein’s (R-Francesville) bill into law on Thursday that could save the lives of more children by adding two tests to Indiana’s newborn screening panel.
Gutwein’s legislation would require spinal muscular atrophy, or SMA, and severe combined immunodeficiency, or SCID, to be added to the list of screenings newborns receive in Indiana shortly after their births. Gutwein said these screenings identify diseases in newborns, providing opportunities for early interventions that can prevent death or the need for long-term care. In Indiana, newborns are already tested for 47 conditions, including sickle cell anemia, cystic fibrosis, hearing loss and critical congenital heart disease.
“This is a very meaningful, lifesaving piece of legislation for families throughout Indiana,” Gutwein said. “I am overwhelmed with the amount of support and momentum it gained for the governor to sign it into law so quickly. Parents can be reassured that their babies are being tested at birth for these diseases so they may have more treatment options and a chance at a better life.”
Spinal muscular atrophy is a severe genetic disorder that alters the motor nerve cells in the spinal cord. Those cells, once affected by SMA, will not regenerate, which then results in muscle weakness and can eventually lead to the inability to walk, talk, swallow and breathe.
Gutwein said out of the four types of SMA, the most severe and common is usually diagnosed within the first few months of an infant’s life. He said children who received treatment for SMA through a new FDA-approved drug therapy were able to achieve unprecedented motor milestones.
Severe combined immunodeficiency makes those affected highly susceptible to life-threatening infections caused by viruses, bacteria and fungi. SCID is often referred to as “bubble boy disease” due to the level of quarantine necessary to avoid infection. The syndrome usually results in the onset of one or more serious infections within the first few months of life, making detection at birth key. These infections are usually serious, and may be life threatening, including pneumonia, meningitis or bloodstream infections. Children affected by SCID can also become ill from live viruses present in some vaccines. Gutwein said this syndrome makes it nearly impossible for a child to live a healthy life if it is not detected at birth.
According to CureSMA.org, approximately 1 in 11,000 babies are diagnosed with SMA. SCID affects approximately 1 in 500,000 births, according to the Indiana State Department of Health.
House Enrolled Act 1017 will go in to effect July 1, 2018. For more information, visit iga.in.gov.
State Rep. Douglas Gutwein (R-Francesville) represents House District 16, which includes all of
Pulaski County and portions of Fulton, Jasper, Newton and Starke counties.
A high-resolution photo of Gutwein can be downloaded by clicking here.