Key committee passes bill to add SMA, SCID to newborn screenings

Posted by: Emily Gaylord  | Monday, January 22, 2018

STATEHOUSE (Jan. 22, 2018) — The House Committee on Ways and Means voted in favor of State Rep. Douglas Gutwein’s (R-Francesville) bill today that works to save the lives of children by adding two new 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 get in Indiana shortly after their births.

“Early detection in infants is key for preventing these detrimental diseases from spreading further,” Gutwein said. “This legislation will provide pre-symptomatic testing for Hoosier babies, giving their families hope and more treatment options in the future.”

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.

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.

Gutwein’s bill can now be considered by the full House. For more information, visit iga.in.gov.

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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.