STATEHOUSE (Dec. 13, 2017) — State Rep. Douglas Gutwein (R-Francesville) is working to prevent deaths caused by the leading genetic cause of death among infants under the age of two.
The Francesville lawmaker is advocating for spinal muscular atrophy to be added to the newborn screening panel. Spinal muscular atrophy is a severe genetic disorder that affects the motor nerve cells in the spinal cord. Once the cells have been affected by SMA they will not regenerate, which results in muscle weakness and can eventually result in the inability to walk, talk, swallow and breathe.
“This session I will be working on passing a new state law that will add SMA to the list of screenings Hoosier babies have before leaving the hospital,” Gutwein said. “I’ve talked to families who have lost a child to this disorder or who are currently suffering as they watch their baby lose the ability to physically function. This is heartbreaking, and policymakers have a chance to do something about it.”
Gutwein said newborn screenings identify diseases in babies shortly after their births, providing opportunities for early interventions that can prevent death or the need for long-term care. In Indiana, newborns are tested for 47 conditions, including sickle cell anemia, cystic fibrosis, hearing loss and critical congenital heart disease.
“As Graham’s parents, we fully understand the devastation of an SMA diagnosis and how it can shatter the hopes and dreams you have for the future of your child,” said Adrienne Vollmer, an advocate for the screening and whose son was diagnosed with SMA in 2015. “Allowing for all Indiana babies to be screened at birth will give families a renewed sense of hope, knowing they have caught the disease as early as possible and can start receiving pre-symptomatic treatment. This bill is providing Indiana babies born with SMA the best possible chance of survival.”
According to Cure SMA, an organization advancing research and providing support to families, there are an estimated eight babies per year born with SMA in Indiana, and more than 112,500 Hoosiers are carriers of the disease.
“When it comes to SMA, early detection is key and it is imperative we test for this before symptoms show up or it may be too late,” 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. The FDA-approved treatment for SMA is effective and can produce remarkable patient outcomes if taken before the onset of symptoms.”
He said children who received pre-symptomatic treatment were able to achieve unprecedented motor milestones, through the new drug therapy.
The General Assembly will officially convene for the 2018 legislative session and begin considering new state laws on Wednesday, Jan. 3.
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.