NEW YORK, June 1 Babies born with Severe Combined Immune Deficiency (SCID) or similar diseases will have a better chance at life as a result of decisive action taken by the Secretary of Health and Human Services, Kathleen Sebelius.
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The Secretary has officially adopted the unanimous recommendation of her Advisory Committee on Heritable Disorders in Newborns and Children's (SACHDNC) to add screening for SCID to the core panel for universal screening of all newborns in the United States.
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The Jeffrey Modell Foundation has tirelessly advocated for this outcome, with co-founder Fred Modell testifying before the SACHDNC in January. "Approximately 11,000 babies will be born in the United States today. But only 300 to 400 of them will be born in the States that currently screen for SCID. They will be the lucky ones. They will be diagnosed, treated, often cured and at least have a chance at life. The Secretary's endorsement of the Advisory Committee's recommendations will save lives and give great comfort and hope to those new mothers and fathers who will not have to risk a tragic loss of their child to SCID."
Secretary Sebelius had 180 days to consider and respond to the committee's recommendation. In her endorsement letter, which came two months before the deadline, she said, "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."
JMF co-founder Vicki Modell praised the endorsement by saying, "This endorsement is wonderful news. It will give states the impetus to include SCID in their newborn screening programs, and save babies' lives. This has already occurred in Wisconsin, where the first diagnosis and cure of a baby took place last year shortly after screening was implemented."
SCID is a primary immunodeficiency affecting infants who lack T lymphocytes, the white blood cells that help resist infections due to a wide array of viruses, bacteria and fungi. Babies born with SCID appear healthy at birth, but cannot survive without early diagnosis and treatment, most often a bone marrow transplant.
The SACHDNC was chartered in February 2003 to perform evidence-based reviews and advise the Secretary regarding the use 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 Committee.
The Jeffrey Modell Foundation was established in 1987, by Vicki and Fred Modell, in memory of their son Jeffrey, who died at the age of 15 from complications of Primary Immunodeficiency - a genetic condition that is chronic, serious and often fatal. The Foundation is a global nonprofit organization committed to early and precise diagnosis, meaningful treatments, and ultimately, cures through clinical and basic research, physician education, patient support, advocacy and public awareness.
SOURCE Jeffrey Modell Foundation
