In Indiana, newborns are currently tested for 47 conditions, including sickle cell anemia and cystic fibrosis. Early detection and treatment are key in preventing the need for long-term care and death. This session, I am supporting legislation that works to save young lives by adding spinal muscular atrophy and severe combined immunodeficiency disease to Indiana’s newborn screening panel.
Spinal muscular atrophy is a severe genetic disorder that alters the motor nerve cells in the spinal cord, which can eventually lead to the inability to walk, talk, swallow and breathe. 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. There is a new FDA-approved drug therapy that when given to children early on can increase their chances of developing vital motor skills.
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 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.
With SMA and SCID, early detection is key. With House Bill 1017, babies will be tested for both of these genetic disorders upon birth, and more Hoosier families can turn to advanced treatments that have better outcomes when used before children get sick.
For questions or input on this and other proposals that could soon be law, email me at email@example.com or call 317-234-9499.
State Rep. Kevin Mahan (R-Hartford City) represents House District 31,
which includes portions of Delaware, Grant and Wells counties.
A high-resolution photo of Mahan can be downloaded by clicking here.