|Action||Amend regulations based on recommendations of VA Genetics Advisory Committee|
|Comment Period||Ends 9/12/2014|
On behalf of the Immune Deficiency Foundation (IDF), we applaud Governor Terri McAuliffe for making Virginia the latest state to screen for Severe Combined Immune Deficiency (SCID), a primary immunodeficiency disease (PI). Babies with SCID appear healthy at birth and without early detection and treatment, these infants cannot survive. Mandating this screening will prevent infant fatalities and avoid potential expensive lifelong care that places an enormous burden on families and society. This law takes a huge step forward for Virginia healthcare policies, and we are grateful that all Virginia babies will now have the chance at a healthy life. It is IDF’s vision that every state includes SCID Newborn Screening on their newborn screening panel to save lives.
Screening all newborns for SCID will help make sure we detect this rare, fatal disease in time for Virginia families to access life-saving treatment. Without newborn screening, it’s unlikely that SCID will be diagnosed before it causes a serious or even deadly infection.
For additional information about SCID, please contact the Immune Deficiency Foundation (IDF), the national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases (PI) through advocacy education and research. Go to: www.primaryimmune.org/SCID.