Action | Amend Regulations to add SMA and X-ALD to the Virginia Newborn Screening System |
Stage | Proposed |
Comment Period | Ended on 7/9/2021 |
I strongly support adding SMA and X-ALD to Virginia’s Newborn Screening Panel and implementation of testing as soon as possible! Virginia is already almost 3 years behind some other states who implemented testing very soon after SMA was added to the RUSP (Recommended Uniform Screening Panel) at the national level. Most states are already screening, and with the addition of Texas a few days ago, about 85% of newborns in the US are being screened. I lost my first granddaughter to SMA 9 years ago when she was 7 months old. No treatment was available then. There are now 3 FDA approved treatments, and proof that early treatment is critical for a profoundly improved prognosis. Every day of delay in treatment makes a difference in the outcome. Please improve and speed up the process for adding diseases to NBS in Virginia, once they are added to the RUSP. If other states can do it, I know there’s a way that we can too. Our newborns deserve the best chance they can get.