Newborn screenings identify various diseases in babies shortly after they are born. In Indiana, newborns are currently tested for 47 conditions, including sickle cell anemia and cystic fibrosis. This provides opportunities for early interventions that can prevent death or the need for long-term care. This session, I am co-authoring a bill that works to save the lives of children by adding two new tests to Indiana’s newborn screening panel: spinal muscular atrophy, or SMA, and severe combined immunodeficiency disease, or SCID.
Severe combined immunodeficiency disease affects approximately 1 in 500,000 births, according to the Indiana State Department of Health. This disease makes those affected highly susceptible to life-threatening infections caused by viruses, bacteria and fungi. It 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.
According to CureSMA.org, approximately 1 in 11,000 babies are diagnosed with SMA. This is a severe genetic disorder that alters the motor nerve cells in the spinal cord which can result in the inability to walk, talk, swallow and breathe. Once those nerve cells are affected by SMA, they will not regenerate. Children who display symptoms of SMA at birth or in infancy typically have the lowest level of functioning.
Out of the four types of SMA, infants diagnosed with the most severe and common type are usually diagnosed within the first few months of their life because of the greater impact on motor functions in earlier ages of onset. However, recently approved Food and Drug Administration therapies are showing remarkable promise if started almost immediately. As with SCID, early detection of SMA is essential for treatment success.
Newborn conditions, common or obscure, can have devastating consequences if they are not detected early. The addition of SCID and SMA screenings to the mandatory newborn testing panel will widen the umbrella of protection that we are providing for our youngest Hoosiers. As your state representative, I am working with the General Assembly to ensure that babies can receive the most effective form of treatment needed for a healthy life. If you have any questions or input, email me at firstname.lastname@example.org or call 317-232-9769.
Rep. Steve Davisson represents Washington County, and portions
of Orange, Lawrence, Jackson, Clark and Harrison counties.
A high-resolution photo of Davisson can be downloaded by clicking here.