The Wisconsin Secretary of Health Services, Linda Seemeyer, recently approved the addition of SMA to the newborn screening panel through the administrative rule making process. SMA was nominated in November 2017 for addition to the Wisconsin panel. In December 2017, the Umbrella Committee of Wisconsin newborn screening specialists who specialize in caring for children with various disorders, such as SMA, reviewed the nomination and recommended adding SMA to the newborn screening panel.
In January 2018, the Secretary’s Advisory Committee on Newborn Screening (SACNBS) reviewed the nomination, as well as the recommendation of the Umbrella Committee. The SACNBS also recommended adding SMA to the newborn screening panel. Based on these recommendations, Secretary Seemeyer acted to move the recommendation to the rulemaking process. If there are any advocacy opportunities during the rulemaking process, Cure SMA will reach out to state advocates with more information. Once these rules are developed and approved, SMA will be officially added to the state panel.
We would specifically like to extend a heartfelt thank you to Drs. Meredith Schultz and Mei Baker for their extensive and important roles in bringing to light the importance of SMA newborn screening in the state of Wisconsin and for their work in submitting the SMA nomination. We also extend our sincere gratitude to Amy and Adan Medina, Dany Sun, Kate Vogedes and all the SMA families in Wisconsin who participated in advocacy efforts highlighting the need for newborn screening.
The Importance of Advocacy
On July 3, 2018, Health and Human Services Secretary Alex Azar approved the recommendation that newborn screening for spinal muscular atrophy be implemented nationwide. This recommendation was issued on February 8, 2018, by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC). With Secretary Azar’s signature, SMA becomes part of the Recommended Uniform Screening Panel (RUSP), a list of 35 core conditions that all newborns born in the US are recommended to be screened for.
Each state must determine whether they will implement SMA screening, and how quickly they will implement it. While this RUSP decision is not a requirement for states to begin screening, many states were waiting for the decision to be made. This means that the next several months will be a critical period of determined advocacy by our community to ensure that as many states as possible will implement screening as quickly as possible. 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.
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