The Ohio Newborn Screening Advisory Committee recommended that SMA be added to their state’s newborn screening panel. The recommendation now goes to the Ohio Department of Health for a rulemaking process. Once these rules are developed and approved, SMA will be officially added to the state panel.
During this rulemaking process, SMA advocates will be able to voice their support for the proposal and for speedy adoption of the rules.
We would specifically like to extend a heartfelt thank you to advocates Marybeth and Chris Camboni and Stephanie Noll for their extensive and important roles in bringing to light the importance and need for SMA newborn screening in the state of Ohio. Both women have been tirelessly working with Representative Boggs and Representative Butler to introduce House Bill 397 to add SMA to the newborn screening list in Ohio. They have devoted countless hours of their time to attend and testify at meetings, work with their local government and spread awareness of this important initiative. We thank you for your continued support and dedication.
The Importance of Advocacy
In February, the federal Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) recommended that newborn screening for spinal muscular atrophy be implemented nationwide. The recommendation is currently awaiting HHS Secretary Azar’s final approval.
Though that federal process is critical to our case for SMA newborn screening, it is also vital that we continue advocating in all 50 states, since the final decision on implementation rests with each state. 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.
If you have not already, please sign up to be an advocate. When you sign up, we’ll notify you of opportunities to advocate in your state or district.