All newborn babies in North Carolina will be tested for severe combined immunodeficiency under a bill that Gov. Pat McCrory signed Monday.
Known as SCID or “bubble boy disease,” the disorder can leave infants vulnerable to deadly infections. Without early detection and a bone marrow transplant, babies with SCID have a life expectancy of only two years.
Parents will pay more for the required screening. The fee will increase from $19 to $24 to cover the State Laboratory of Public Health’s $466,132 cost to buy new equipment for the screening.
“This can be extremely life-threatening for infants, so early detection is crucial,” McCrory said as he signed the bill. “We need to do everything we can to diagnose this as early as possible.”
Babies who get the necessary transplant by the age of 3.5 months have a 94 percent survival rate.
The governor also pointed to the health care costs associated with SCID. While a bone marrow transplant for a healthy infant costs less than $100,000, treatment for a SCID-related infection can cost up to $4.5 million.
The new screening requirement, McCrory said, “will save the cost of medicine and save taxpayer money.”
While the House and Senate voted almost unanimously for the new screening, the N.C. Democratic Party criticized the $5 fee increase when it was approved as part of the state budget. Coupled with new sales taxes and DMV fee increases, Democrats argued, the budget changes would make “many of the most basic items of everyday life” more expensive.
Rep. Charles Jeter, a Mecklenburg County Republican who co-sponsored the screening legislation, has said that even with the fee increase, North Carolina still has “one of the cheapest fees in the nation.” The test is already required in 26 other states.
The new law is named for Carlie Nugent, a baby from the Charlotte suburb of Harrisburg who died from SCID in 2000. The Nugent family joined McCrory for Monday’s bill signing ceremony.
“It’s really beyond words how grateful I am,” said Stephanie Nugent, Carlie’s mom. “I’m glad to finally see her purpose in life fulfilled.”
McCrory signed the bill on the same day the N.C. Child Fatality Task Force released statistics showing that the state’s child death rate didn’t change last year.
Last year’s rate was 57.8 deaths per 100,000 children – a number that has dropped significantly since 1991, when it was 107.6. But the rate hasn’t dropped much since 2010.