Client News


Tuesday, March 13, 2012

~ State budget includes funding for detection of SCID at most effective and cost efficient stage ~

LAKELAND, Fla. – Life-saving legislation, which will bring the Sunshine State one step closer to ensuring newborns receive a vital screening for Severe Combined Immunodeficiency Disease (SCID), is now in the hands of Gov. Scott. 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.

“We are grateful to the members of both Chambers for including SCID screenings in the final budget as part of the panel of disorders screened for at birth by the Florida Department of Public Health. Now we are looking forward to the Governor supporting this measure and Florida’s little ones,” said Heather Smith, co-founder of SCID Angels for Life, an advocacy group raising awareness and promoting preventing of SCID. “Florida parents will have peace of mind knowing their state health department continues to keep pace with medical advances, providing the most cost-effective, leading edge care for their babies.”

Smith singled out the following legislators for recognition and thanks: Rep. Matt Hudson (R-101); Rep. Denise Grimsley (R-77); House Speaker Dean Cannon (R-35); Senator Joe Negron(R-28); Senator Don Gaetz (R-4); and Senator Eleanor Sobel (D-31).

“With the passage of SCID screenings, the state will save babies’ lives and prevent needless death, suffering and financial hardship for Florida’s families,” said Smith. “SCID is a treatable illness in which an infant fails to develop a normal immune system. After successful treatment, people with SCID can lead normal lives.”

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.

“Not only does newborn screening for SCID make sense, it makes financial sense too,” said Dr. Rodney Howell, professor of pediatrics at the University of Miami, and a former chair of the U.S. Secretary of Health & Human Services’ Commission on Heritable Disorders. “I recommended states add SCID to their screening panels years ago and I’m thrilled to see Florida move forward in the right direction for saving the lives of our most vulnerable.”

“It’s a wonderful day for Florida and we are honored to advocate for this critical legislation,  knowing the need is great,” shared Kyle and Audrey Harden, parents of Annabelle Joy, their daughter born in Florida prior to SCID screening who died of the disease a year ago last month.  “While we miss our child every day, we will not rest until this horror can be prevented for all of Florida’s families.”
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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