North Dakota Becomes 40th State to Screen for Severe Combined Immunodeficiency

A Baby’s First Test – The Answers Might Save a Life

The North Dakota Department of Health (NDDoH) announced that July 1, 2016 marked an important step in saving the lives of babies born in North Dakota. The state newborn screening program expanded their newborn screening panel to include Severe Combined Immune Deficiency (SCID), also known as “Bubble Boy Disease,” a rare but serious 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.

The Immune Deficiency Foundation (IDF), the national patient organization for persons with primary immunodeficiency diseases, commends the state of North Dakota for making this momentous decision showing that every life is worth saving. “It is imperative that we sustain this momentum by establishing newborn screening in all 50 states,” said Marcia Boyle, IDF President & Founder.

“Early detection and treatment saves lives and improves outcomes for SCID and all disorders included on the newborn screening panel,” said Joyal Meyer, Newborn Screening Program Director in North Dakota.

Treatment for SCID includes a bone marrow transplant, which is often done within the first few months of life. “The five-year survival rate for infants diagnosed with SCID who receive treatment by three and a half months of age is approximately 94 percent,” according to Dr. Chris Cleveland, Pediatric Immunologist at Sanford Health in Fargo and SCID Medical Consultant for NDDoH.

Newborn screening is done by taking a few drops of blood from a baby’s heel 24 to 48 hours after birth. The blood is tested for 51 rare but serious disorders. All of the disorders screened for can be treated, and most babies, if identified early, can grow up to be healthy with normal development.

North Dakota, as the 40th state to begin SCID screening, raises the total number of births screened in the U.S. to 87.34%.  IDF continues to work tirelessly for universal newborn screening for SCID.

Want to get involved in the IDF SCID Newborn Screening Campaign? Contact IDF: idfscidinitiative@primaryimmune.org.

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