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WTSP: Doctors, parents urge testing for SCID

Tuesday, March 20, 2012

St. Petersburg, Florida — With his mom by his side, little Kye Johnson has spent much of his life in a hospital. It all started with a string of visits to the ER.

“A cold, a cough, pneumonia, bronchitis,” Kye’s mother Alethea Arthur ticks off.

It turns out Kye was born with Severe Combined Immunodeficiency or SCID.  He lacked a working immune system.  Sometimes it’s called “Bubble Boy” disease.

“They’re susceptible to any type of infection and because they have no immunity, these infections are usually fatal,” explains Dr. John Sleasman of All Children’s Hospital.

Right now, Kye is at All Children’s recovering from a bone marrow transplant, which if successful, can cure SCID. But because he’s been in the hospital so long — nine months — the bills are astronomical.

“So far his medical bill is up to $3 million and if he had been screened at birth, he wouldn’t have had to have been here nearly this long,” says Arthur.

Taxpayers, through Medicaid, are picking up Kye’s bill. So a different kind of bill on the governor’s desk right now aims to reduce medical costs for SCID. The legislation establishes a system to make newborn screening for SCID routine. Early detection would not only save money, but save lives.

“If we intervene early and treat, everybody goes home happily ever after,” says Dr. Sleasman.

The idea of testing is nothing new. Several other states already have a testing system, which involves taking just a drop of blood from a newborn.

Last year, Governor Rick Scott vetoed similar legislation. This time around, health professionals and families believe they’ve done a better job educating his staff, and they’re hoping stories like Kye’s SCID will bring the governor’s veto pen skidding to a stop.

For more information on a group that supports SCID testing in Florida click here.

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