On May 21, 2010, Secretary of Health and Human Services (HHS) Kathleen Sebelius adopted a panel of 30 core conditions and 26 secondary conditions as a national standard for uniform newborn screening programs.

Secretary Sebelius’ decision came in response to recommendations from the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC), and included the addition of Severe Combined Immunodeficiency (SCID) to the previous panel of 29 core conditions, as well as the addition of related T-cell lymphocyte deficiencies to the list of secondary targets as a comprehensive entity.

Since 2005, nine conditions have been nominated for inclusion in the Recommended Uniform Screening Panel. Of these nine, three were determined by the SACHDNC as not ready for evidence review, three others are currently undergoing the review process (Hemoglobin H Disease, Hyperbilirubinemia / Kernicterus and Critical Cyanotic Congenital Heart Disease) and three completed the review process, but were not approved as part of the panel (Krabbe Disease, Pompe Disease and SCID). In February 2010, SCID was re-evaluated based on the availability of additional evidence. Upon this re-evaluation, the SACHDNC found SCID to meet the requirements for the Core Panel and formally recommended inclusion of SCID in a request to the Secretary of HHS.

SCID is a group of disorders characterized by the absence of an immune system, causing infants to develop recurrent infections, leading to death in early childhood. SCID affects a minimum of 1 in 100,000 newborns; however, some studies estimate that the actual number is closer to 1 in 40,000. Treatment in the first months after birth can prolong life and prevent infections.

In her communication to the SACHDNC regarding the decision, Secretary Sebelius noted that “adopting these SACHDNC recommendations will provide the federal guidance necessary to assist states to voluntarily bring their newborn screening programs into alignment with the most up-to-date research, technology, laboratory and public health standards and practices.”

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