Action | Amend Regulations to add SMA and X-ALD to the Virginia Newborn Screening System |
Stage | Proposed |
Comment Period | Ended on 7/9/2021 |
There is no valid reason why it has taken this long for SMA to be added to the VA NBS. There have been FDA approved treatments for over 3 years that are able to turn a terminal diagnosis into one of hope with early treatment. For babies to wait months if not years for a diagnosis is literally playing with their lives. I have lost a child to SMA pre-treatments and have a 7 year old diagnosed via amnio & treated starting at 3 months that is thriving. I am so disappointed in my state for taking so long to get around to this when the majority of states had this implemented within 2 years of treatments being available. I fully support the addition of these diseases to the NBS and bringing hope to otherwise devastating diagnoses.