On May 21, 2010, the Department of Health and Human Services (HHS) announced the addition of Severe Combined Immune Deficiency (SCID) to the recommended uniform screening. It is imperative that we sustain this momentum by establishing newborn screening programs in all 50 states.
Background of the IDF SCID Newborn Screening Campaign
SCID is a primary immunodeficiency disease. Affected infants lack T lymphocytes, the white blood cells that help resist infections due to a wide array of viruses, bacteria and fungi. 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. If a baby with SCID receives a bone marrow transplant in the first 3.5 months of life, the survival rate can be as high as 94 percent. However, the survival rate drops to less than 70 percent for infants who are transplanted after that age. The main causes for the drop in survival rate are serious infections babies with SCID developed prior to transplantation.
In the 1970’s and early 1980’s, many around the world first heard of SCID when a Texas boy, David Vetter, affectionately known as the boy in the bubble, was born with the disorder and lived in protected environments to maintain relatively germ-free surroundings.
The Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) was chartered in February 2003 to perform evidence-based reviews and advise the Secretary regarding application of new screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. SCID is the first new disease to be added to the federal uniform core-screening panel by the evidence-based Committee review process.
The Immune Deficiency Foundation (IDF) has strongly supported and worked tirelessly toward this goal for many years, and as of December 10, 2018, all 50 states are screening for SCID.
Campaign Objective
The Immune Deficiency Foundation applauds the Secretary of Health and Human Service's inclusion of SCID in the national standards. IDF wants every state to include SCID on their newborn screening panel immediately in order to save lives. To provide education and information about this issue, IDF has created awareness materials including the IDF SCID Newborn Screening blog, Parent Guides for Abnormal Screen and Diagnosis, the IDF SCID Newborn Screening Toolkit, and Advocacy Channel videos.
SCID Newborn Screening: Current Status of Implementation Map
As of December 10, 2018, All newborns are screened for SCID in the U.S.
Also screening: District of Columbia, Navajo Nation, Puerto Rico
