Under the Dome

NC House OKs infant screening for rare disease

Newborn babies would be tested for severe combined immunodeficiency – also known as SCID or “bubble boy disease” – under a bill that passed the N.C. House Thursday.

The Baby Carlie Nugent Bill, named for a Union County infant who died of the disease, would direct $466,132 to buy equipment for the test. The State Laboratory of Public Health would increase its newborn screening fee from $19 to $24.

“We still have one of the cheapest fees in the nation,” said Rep. Charles Jeter, the Huntersville Republican who sponsored the bill.

The bill points to studies that show early detection is key to saving infants from the disease. Babies who get the necessary transplant by the age of 3.5 months have a 94 percent survival rate.

“I think the key for this is, if this bill passes today, we can cure 94 percent of the cases with a simple bone marrow transplant from either the parent or a sibling,” Jeter said. “This is a bill that will truly save lives.”

Only one House member voted against the bill: Rep. Michael Speciale, a New Bern Republican. The legislation now goes to the Senate.

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