We are thrilled to share that both Arkansas and Florida recently adopted SMA to their state newborn screening panels! They now join the growing list of states that have adopted SMA to their newborn screening panels.
Arkansas Adopts SMA Newborn Screening
Congratulations to Arkansas, who just passed legislation to add SMA to their newborn screening panel. Earlier this year, Representative Julie Mayberry and Senator Bart Hester introduced legislation, which was quickly approved and signed into law by Governor Asa Hutchinson.
Thank you to the Woodruff family and the Miller McNeil Woodruff Foundation, the Dillon family, the Luper family, the Turner family and Sylvia Wheeler and all our advocates for their hard work in getting SMA added to Arkansas’s newborn screening panel!
Florida Adopts SMA Newborn Screening
On Friday, February 15th, the Florida Genetics and Newborn Screening Advisory Council voted unanimously to add SMA to their state newborn screening panel. Florida now has 18 months to implement SMA newborn screening, so we expect statewide screening to start in August 2020.
Thank you to the Kyle and Katie Myers, Hannah Williford, Jeremy Camp, Audra Butler, Katie Kerns, Dr. Finkel and all our advocates for this great win in Florida!
The Importance of Advocacy
In July 2018, 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.
We still need your help to make SMA screening permanent in every state! Sign up to be an advocate, send your elected officials a message (find their information here), or email us at [email protected].
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.
Thank you to Randall Lee for the photograph of Arkansas’ Governor, Asa Hutchinson, signing House Bill 1074.