Immune Deficiency Foundation Reflects on Milestone, Looks to Future
Effective December 10, 2018 all children born in the United States will be tested for Severe Combined Immunodeficiency (SCID), a life-threatening disorder and one of the most severe forms of primary immunodeficiency diseases (PID). Louisiana was the 50th state to officially screen newborns for SCID beginning this December.
For more than 10 years, the Immune Deficiency Foundation (IDF), along with dedicated volunteers and partner organizations, has worked to implement universal screening for SCID in the U.S., making sure all babies have a chance at a healthy, happy life.
“Reflecting on this significant milestone of bringing SCID newborn screening to all 50 states, there are two groups of people that come to mind,” said John G. Boyle, President & CEO of the Immune Deficiency Foundation. “The first is the families affected by SCID, medical professionals, legislators, public health professionals, and nonprofit organizations who all worked together to achieve a goal that seemed nearly impossible a decade ago. We are grateful for their dedication and hard work. The second group that comes to mind is the young SCID people with SCID, many of them are now children as old at 8 or 10 years of age, who are alive and thriving because screening was brought to their state. That is the most striking and important element of this achievement.”
Wisconsin was the first state to test for SCID beginning in 2008. In 2010, the Department of Health and Human Services (HHS) announced the addition of SCID to the recommended uniform screening. Other states soon began following Wisconsin’s lead.
To support screening and fill in gaps to successful care, IDF recently began working under a grant from the Health Resources and Services Administration (HRSA) to launch a two-year program—SCID Compass—to improve outcomes for infants detected through newborn screening. The SCID Compass program is designed to increase awareness and knowledge about SCID, support state newborn screening programs, link families -especially those living in medically underserved areas – to services and develop long-term follow-up strategies for infants identified through newborn screening.
To learn more about SCID newborn screening in the U.S., go to www.primaryimmune.org/scid.