Spring 2019 SMA Newborn Screening Update

By Cure SMA | Published On May 13, 2019

Spring 2019 SMA Newborn Screening Update

We are thrilled to announce that Missouri, Pennsylvania and Vermont have now implemented permanent statewide SMA newborn screening, making 6 states that are now permanently screening statewide for SMA. Several other states have adopted SMA newborn screening and have moved one step closer to implementing statewide screening. There are now 4 states running SMA screening pilots and 16 states that have adopted but not yet implemented newborn screening for SMA.

Missouri, Pennsylvania and Vermont Implement SMA To Their Newborn Screening Panels

Missouri implemented and began permanent statewide screening for SMA earlier this year in January. Pennsylvania followed close behind and began screening in March 2019. Vermont began screening this month, Mary 2019, after adopting a proposed regulation to get SMA added to the newborn screening panel.

Thank you to all the individuals, families and Cure SMA Chapter members who advocated to make SMA newborn screening permanent in Missouri, Pennsylvania and Vermont! Your dedication and support made this possible.

Rhode Island, Nebraska, Oklahoma and Tennessee Adopt SMA Newborn Screening

Rhode Island’s Newborn Screening Advisory Committee adopted SMA to their newborn screening panel in January. It is estimated that permanent screening for SMA will begin early next year. Nebraska adopted SMA to their newborn screening panel this March. There is currently no timeline for when screening will begin. Oklahoma adopted SMA to their screening panel through a rule change this spring. There is currently no timeline for when screening will begin. Tennessee also adopted SMA this spring to their newborn screening panel and is expected to begin screening in March 2020. Last but not least, the Advisory Committee in Maine just voted to adopt SMA newborn screening.

As of May 2019, over half the states have taken action to add SMA to their newborn screening panels.

Thank you to all the individuals, families and Cure SMA Chapter members from Rhode Island, Nebraska, Oklahoma, Tennessee and Maine who advocated to get SMA adopted in these states!

Iowa Approves Pilot for SMA Newborn Screening

The Center for Congenital and Inherited Disorders Advisory Committee met this April and approved to conduct a pilot for SMA newborn screening. This is the next step in the process before Iowa can permanently implement SMA to their newborn screening panel. There are currently no details on the pilot or when it will begin.

Thank you to all the individuals, families and Cure SMA Chapter members who continue to advocate to get SMA newborn screening in Iowa!

The Importance of Advocacy

In July 2018, Health and Human Services Secretary Alex Azar officially approved adding SMA to the official Recommended Uniform Screening Panel (RUSP). Although this was a significant and important step, it is only the beginning. Each state still decides what conditions it will include on 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 advocacy@curesma.org. None of our previous victories in newborn screening would have been possible without action from the SMA community.

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.

Topics: Our Impact, Advocacy, Front Page News

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