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Immune Deficiency Foundation Praises ACHDNC Recommendation for SCID Screening in Newborns
Date:1/25/2010

ates."

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 recommended for addition to the federal uniform core-screening panel by the evidence-based Committee review process.

"Although this recommendation has been in development for two years," said Dr. Amy Brower, parent, researcher and former ACHDNC committee member, "and it may take several more years to implement screening in all 50 states and US territories, we must work to reduce the time from this recommendation to the widespread adoption of testing and treatment."

In 2004, Duke University Professor of Pediatrics and Immunology, Dr. Rebecca H. Buckley -- currently the chair of the Immune Deficiency Foundation's Medical Advisory Committee and an internationally known expert on SCID --  testified before the ACHDNC (to which she was subsequently appointed in 2007).

Dr. Buckley informed the panel that SCID is 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 develop prior to transplantation.

"As the parent of a child who was diagnosed with SCID only after he became critically ill," said Barb Ballard, a member of the IDF Board of Trust
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SOURCE Immune Deficiency Foundation
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