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TALLAHASSEE DEMOCRAT: A new infant screening awaits Scott’s approval

Friday, April 13, 2012

A new infant screening awaits Scott’s approval

Florida will likely heed the call of the nation’s top health care advocate and add a newborn screening for a primary immune-system disorder.

Funding for the newborn screening of Severe Combined Immunodeficiency, or SCID, is a part of the 2012-13 state budget that is now awaiting the signature of Gov. Rick Scott to become law.

No one knows for sure how many babies are born with SCID, commonly called “bubble boy disease,” in Florida each year because the state does not test for the disorder, said state Sen. Joe Negron, a Republican from Palm City who is chairman of the subcommittee on Health and Human Services Appropriations. However, experts estimate that between eight and 12 babies die from a SCID-related disease each year. Because SCID affects the immune system, the body is not able to fight off infections like pneumonia, meningitis or blood stream infections that become fatal in those who suffer from SCID.

If a simple blood test is done early enough, the disorder can be treated, Negron said. If not, later treatment can cost millions of dollars and is most often not successful.

A Duke University Medical study recently showed it costs about $2.4 million to care for a baby who is diagnosed with SCID late but only $79,000 to care for treatment after an early diagnosis 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.”

Nearly $1.9 million was included in both the Senate and House versions of the budget so the proposal was included in the first round of approvals when the two groups met to hash out budget differences, Negron said. The state Department of Health requested the funding last year, but it was vetoed by Scott. The governor’s office has information about it this year from the House subcommittee on Health Appropriations.

A national push for SCID screening began in 2010 when U.S. Secretary of Health and Human Services Kathleen Sebelius added the disorder to a list of 29 genetic disorders suggested for screening under the national Uniform Screening Panel.

The slang name of SCID came about when people learned of a Texas boy named David Vetter who lived his short life inside a sterile plastic cocoon to avoid infections that could kill him. The disorder gained more notoriety in 1976 when John Travolta starred in “The Boy in The Plastic Bubble,” a made- for-TV movie inspired by the lives of Vetter and Ted DeVita.

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