Action | Amend Regulations to add SMA and X-ALD to the Virginia Newborn Screening System |
Stage | Proposed |
Comment Period | Ended on 7/9/2021 |
Adding Spinal Muscular Atrophy to the newborn screening panel is a matter of life or death for some nine Virginia babies a year. The sooner families know that they face this choice, the more likely they can obtain treatment so that their children will grow up free of wheelchairs, feeding tubes, and early death. An infusion of Zolgensma at day 10 of a baby's life may mean that the baby can produce the proteins necessary to lead a normal life thereafter. It's still a little early to tell how complete the cure is, since FDA approval was recent, but it seems very substantial so far. Please act immediately.
Thank you,
Robin Westbrook, Great Falls, VA