Last night, Governor Eric Holcomb of Indiana signed HB 1017, adding spinal muscular atrophy (SMA) and severe combined immunodeficiency (SCID) to the state’s newborn screening panel.

The bill makes Indiana the fourth state in the country to adopt permanent SMA screening, following Missouri, Utah and Minnesota. The legislation was sponsored by Representative Doug Gutwein, and came about because of the tireless efforts of Adrienne Vollmer, an SMA community advocate.

The Indiana state lab will now initiate the start-up process for SMA screening, with screening expected to be fully implemented by summer 2018.

The Importance of Advocacy

Earlier this month, the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommended that newborn screening for spinal muscular atrophy be implemented nationwide. The recommendation is currently awaiting HHS Secretary Azar’s final approval.

Though that federal process is critical to our case for SMA newborn screening, it is also vital that we continue advocating in all 50 states, since the final decision on implementation rests with each state.

Thanks to the dedicated advocacy of our community, Cure SMA has been at the forefront of federal- and state-level work for newborn screening. Cure SMA is also supporting screening in several states, including Utah, through grants that cover the start-up costs for SMA screening.

If you have not already, please sign up to be an advocate or email us at [email protected]. In each of the four states that have added permanent newborn screening, grassroots advocacy by our community was a vital part of our efforts. A simple first step, such as attending a newborn screening committee meeting, or making an advocacy visit to a state legislator, can open the door to life-saving early treatment for those born with SMA. On average in the US, one baby each day is born with SMA. Each day represents the opportunity to save a life through newborn screening and early treatment.

Be sure to visit our website or follow us on Facebook or Twitter for updates. Working together, we can save the lives of babies born with SMA.