New York State will screen every child for SMA beginning October 1, according to the New York State Department of Health. New York joins Missouri, Utah, Minnesota, Indiana and Illinois as states that have adopted permanent screening for SMA.
Since 2016, New York has been screening for SMA on a pilot basis. The data provided from this pilot was an important part of the nomination of SMA to the federal Recommended Uniform Screening Panel (RUSP). This latest announcement means that screening for SMA will now be permanent for all babies born in the state.
We thank the New York State lab for their support, and for providing critical data for the RUSP nomination. We also thank SMA advocates Dianne Larson, Erin Bonner and Debbie Cuevas for their efforts on behalf of our community.
Along with these six permanent screening states, another four states—North Carolina, Georgia, Massachusetts, and Wisconsin—are also screening on a pilot basis. The goal is to move these four states to permanent screening once the pilots are completed, similar to New York.
In total, screening in these states will save an average of 100 babies born each year with SMA. This is a significant accomplishment for our community, but more work remains to be done.
The Importance of Advocacy
In July, Health and Human Services Secretary Alex Azar officially approved adding SMA to the official federal recommendations for newborn screening. Although this is a significant and important step, it is only the beginning. Each state decides what conditions it will include in its screening panel. We must continue to work to make sure that every state screens for SMA.
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 providing states with grants to help cover start-up costs for SMA screening.
None of our previous victories in newborn screening would have been possible without action from the SMA community. 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.