On May 21, 2010 our prayers were answered! The Secretary of Health and Human Services, Kathleen Sebelius, announced the addition of SCID to the core panel of 29 genetic diseases. Effective December 10, 2018 all babies born in the U.S. are screened for SCID, however, confirming your babies doctor has performed the SCID screening test is a great idea.
What is Universal Newborn Screening for SCID and why is it important?
The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) developed a list of 29 core conditions (RUSP-Recommended Universal Screening Panel) that all babies born in the United States should be screened for, however, the newborn screening tests which are done in the United States are decided on a state-by-state basis. SCID was the first condition in 2010 to be added to the RUSP since it’s adoption in September of 2005, and several other conditions have been added following SCID. When babies are born with SCID they tend to look like any other healthy infant. That’s why the passing of Newborn Screening for SCID was so important, because looking at these babies on the outside, you would have no idea that there was something so terribly wrong going on inside their little bodies. Without early diagnosis and treatment, most often by a bone marrow transplant or gene therapy, these babies will most likely die before their 1st birthday. Newborn screening for SCID is being conducted in all 50 states in the US and the tests are usually done before the baby leaves the hospital. If the tests are done earlier than 24 hours after the baby is born, a repeat test is recommended at 1 to 2 weeks of age.