On behalf of Florida's primary immune deficiency community, we would like to express our utter disappointment and disbelief over Gov. Rick Scott's vetoing of line item No. 485, "Severe Combined Immunodeficiency Disease (SCID, also known as Bubble Boy disease) Testing Newborn Screening Program."
Babies with SCID appear healthy at birth, but without early diagnosis and treatment, usually a bone-marrow transplant from a healthy donor within months of birth, these infants cannot survive. With early diagnosis and treatment, these babies have a very high probability of living normal, healthy and productive lives.
An infant identified with SCID and treated within the first three months of life has a 95 percent success rate of survival at an estimated cost of only $50,000 to $100,000.
An infant treated after five months has a less than 70 percent survival rate and is likely to have a lifetime of health complications. The later treatment begins, the more likely lifelong disabilities will develop.
As a Floridian and parent, as well as a physician, who has lost a child to SCID, I would like to express my great disappointment and extreme frustration. Scott's support of this critical life-saving measure would have helped to ensure the safety of some of Florida's youngest residents, while saving the state millions of dollars.
Hopefully, with education and information on this issue, the governor will work to fix this expeditiously. Without his support, babies in Florida will continue to die from this often-preventable disorder.
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