22nd-29th April 2019

Immune Deficiency Foundation: Fighting for SCID Newborn Screening in the U.S

The World PI Week 2018 campaign focuses on early testing and diagnosis of primary immunodeficiency diseases (PI). The Immune Deficiency Foundation (IDF), the national nonprofit organization in the U.S. dedicated to people with PI and proud member of the World PI Week Steering Committee, has worked to improve diagnosis of these rare, chronic diseases in the U.S., particularly over the past several years through implementation of newborn screening for Severe Combined Immune Deficiency (SCID), which is the most severe of the primary immunodeficiencies.

Babies with SCID appear healthy at birth, but without early treatment, most often by bone marrow transplant from a healthy donor, these infants cannot survive. SCID has been characterized in the medical community as a pediatric emergency.

IDF has strongly supported and worked to ensure every state in the U.S. includes SCID on their newborn screening panel since the U.S. Department of Health and Human Services announced the addition of SCID to the recommended uniform screening in 2010. This year, IDF will continue its campaign for all 50 states to add SCID to their newborn screening panels. The number of states currently screening is 47 states; therefore 94% of all newborns in the U.S. are receiving SCID screening. IDF is continuing its efforts in Alabama, Indiana and Louisiana with the aim of having all 50 states screening by the end of 2018. IDF looks forward to further research and development allowing for screening of additional disorders in the future, including the KREC test for X-linked Agammaglobulinemia. Newborn screening for SCID is lifesaving. With this early diagnosis and proper medical care, many patients live full and independent lives.

To learn about SCID and newborn screening, go to: www.primaryimmune.org/idf-scid-center