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Tuesday, April 17, 2012

~ Florida helps lead the way as the 11th state required to screen for SCID at birth ~

LAKELAND, Fla. – Today, the State of Florida took an important step in saving the lives of Florida’s future by approving Severe Combined Immunodeficiency Disease (SCID) testing for newborns as a part of the 2012 budget. Florida is now in line with the recommendations from the Florida Genetics and Newborn Screening Advisory Council and the United States Department of Health and Human Services and helps lead the way as the 11th state to require this screening at birth. April also happens to be Primary Immunodeficiency Month in which advocates work to raise awareness of primary immunodeficiency disorders (PIDD), such as SCID.

“We couldn’t be more pleased that Governor Scott has approved these life-saving screenings for Florida newborns,” said Heather Smith, co-founder of SCID Angels for Life, an advocacy group raising awareness and promoting the prevention of SCID. “With the Governor’s help, Florida has taken a pivotal step in preventing the unnecessary deaths of children with SCID by including these vital screenings as a part of the panel of disorders screened for at birth by the Florida Department of Public Health.”

The symptoms of this disease, also known as “Bubble Boy Disease,” do not appear at birth; however, newborn screenings offer an opportunity to diagnose the disease early when treatment is most effective and cost efficient. The incidence of SCID is approximately 1 in 32,000 babies.  According to Duke University Medical Center’s Rebecca H. Buckley, M.D. it costs $2.4 million to care for a baby who was diagnosed late and $79,000 to care for a baby who was diagnosed early through newborn screening.

“As the parent of a child suffering with SCID, I truly understand how important this screening is for all new babies,” said Alethea Arthur, mother of Kye Johnson, an infant diagnosed late with SCID that is being treated at All Children’s Hospital in St. Petersburg. “These newborn screenings will help ensure that SCID does not go undetected, as no parent should have to watch their child suffer needlessly. Gov. Scott and both state houses have shown their dedication to protecting Florida’s children and families and I can’t thank them enough.”

To learn more about SCID Angels for Life visit


About SCID Angels for Life: Established in 2008, SCID Angels for Life is a non-profit 501(c)3 with a mission to increase awareness, benefit research, and provide parent and family education for those affected by SCID.


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