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Save Lives: Require Spinal Muscular Atrophy Newborn Screening

This petition had 2,106 supporters


August is Spinal Muscular Atrophy (SMA) Awareness Month. Please join our efforts to require SMA newborn screening, and help end the deadly effects of SMA. 

About SMA:

•  SMA is the number one genetic killer of babies and children under the age of two.
•  SMA is a motor neuron disease like ALS.
•  SMA robs the ability to move, swallow, and eventually breathe. 
•  One in 40 unknowingly carries the gene responsible for SMA.
•  When two carriers have a baby, there is a 25% chance the baby will have SMA, a 50% chance the baby will be a carrier, and a 25% chance the baby will be unaffected.
•  One in 10,000 babies is born with SMA. 

The FDA approved Spinraza as the first treatment for SMA on December 23, 2016. However, newborns continue to go untreated when they would receive the most benefit, as no states are performing SMA newborn screening.

Newly diagnosed Type 1 SMA babies treated with Spinraza didn't lose their ability to move, swallow, and breathe, but instead gained strength. Some even crawled and took steps — steps away from the deadly effects of SMA.

Newborn babies treated within the first two weeks never lost abilities to SMA, and developed as average babies do. They crawl, eat, stand, and walk. Only newborns with older SMA siblings have been treated this way, as their parents knew to screen for SMA. Every newborn needs to be screened for SMA, so babies born with SMA can develop just as babies without SMA do. 

For this to happen, SMA needs to be added to the Recommended Uniform Screening Panel (RUSP), states need to require SMA newborn screening, and funding needs to be provided for SMA newborn screening.

The Advisory Committee on Heritable Disorders in Newborns and Children (Committee) is scheduled to vote to add SMA to the RUSP at its February, 2018 meeting. Once the Committee votes favorably to add SMA to the RUSP, the Secretary of the Department of Health and Human Services (HHS) will add SMA to the RUSP. This is an important step, as many states look to the RUSP when adding new conditions to screen for. This petition will be delivered to both the Committee, and the Secretary of HHS.

States also need to require newborn screening, as the RUSP is only a recommendation, it does not mandate states to test for conditions. We will continue to pursue SMA newborn screening in every state, and this petition will help our efforts. Missouri is the only state to enact newborn screening legislation, and will begin screening for SMA in January of 2019.

Federal and state funds are also needed to begin and continue SMA newborn screening. This petition will help us as we advocate for funding with the appropriate federal and state congressional members.

Act Now:

With an FDA-approved treatment, it is urgent we secure SMA newborn screening. Newborn babies treated within the first two weeks will have the best chance at progressing as they would without SMA. Every baby born with SMA should be afforded this life-saving treatment.

Please sign our petition urging Committee to vote to add SMA to the RUSP, urging states to require SMA newborn screening, and urging federal and state congressional members to provide funding for SMA newborn screening. 

 



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