Nevada Starts Screening for SMA – Only One State Remains!

Nevada has become the 49th state to begin screening for spinal muscular atrophy (SMA). Nevada State Public Health Laboratory officials confirmed with Cure SMA that beginning December 21, 2023, all Nevada newborns will be screened for SMA, a neuromuscular disease.

“We are grateful for the work of the Nevada Department of Health and Human Services and its lab for implementing newborn screening of SMA,” Kenneth Hobby, Cure SMA President, and Dr. Mary Schroth, Cure SMA Chief Medical Officer, said in a joint statement.

“This significant milestone was only possible because of Nevada families of children with SMA and individuals with SMA who signed petition letters, showed up to meetings, and shared their SMA experiences over the past several years to urge state leaders to screen for SMA.”

With the addition of Nevada, Hawaii remains the only state that is not currently screening for SMA. “We are one state away from the SMA community’s goal of newborn screening of SMA in all 50 states,” said Maynard Friesz, Cure SMA Vice President for Policy and Advocacy. “Based on our education and advocacy in Hawaii, we believe we’ll hit that 100 percent mark in January 2024, which would make it truly a year to celebrate.”

Cure SMA has made universal newborn screening of SMA in all 50 states a top national priority. Once SMA was added to the federal recommended newborn screening panel (RUSP) in 2018, Cure SMA worked with individuals with SMA and their families across the country to educate state policymakers and other key stakeholders about the importance of early diagnosis of SMA through newborn screening. By the end of 2018, four states were screening for SMA, reaching about 10 percent of all U.S. births. The SMA community’s most successful year was 2020 when 13 states, including states with high birth rates (California, Illinois, and Florida), started to screen for SMA, covering another 31% of all U.S. newborns. Achieving SMA screening in all 50 states in 2024 will mean that parents of babies born with SMA will receive an early diagnosis that will allow them to make timely decisions about treatment and care.