Governor McCrory Increases Protections For Newborns; Signs Baby Carlie Nugent Bill | Eastern NC Now

 Raleigh, N.C.     Governor Pat McCrory signed the Baby Carlie Nugent Bill (HB698) into law today, legislation that will add a screening test for severe combined immunodeficiency (SCID) and other T-Cell lymphopenias to the newborn screening panel.

 The bill is named after Carlie Nugent from Harrisburg, N.C. In 2000, when she was six months old, Carlie was diagnosed with SCID. A month later she passed away from complications of SCID after a bone marrow transplant. Carlie's parents, Chris and Stephanie, sister Cayla, brother Michael and her grandmother Linda as well as legislators and North Carolina health care leaders were in attendance at the Executive Mansion when Governor McCrory signed the bill.

 "Carlie left us far too early, but her life has inspired action to help other families across North Carolina," Governor McCrory said. "Every family should be able to screen and treat SCID as soon as possible, and the Baby Carlie Nugent Bill will help families do just that. This is a huge step in the right direction for protecting North Carolina newborns."


 SCID is a primary immune deficiency disorder caused by several different genetic issues. Children born with SCID lack immunity against bacteria,viruses and fungi, and are prone to repeated and persistent infections that would not cause serious illness in a person or infant with a normal immune system.

 While SCID can be extremely life threatening for infants, early detection is crucial and lifesaving. The leading center for treatment of SCID in the United States is at Duke University Medical Center. According to the Center, if a bone marrow transplant is performed before a baby is three and a half months of age, there is a 94 percent survival rate, compared with a 70 percent survival rate if a transplant happens after that age. The life expectancy for an infant who does not receive a bone marrow transplant is just two years old.

 The cost of testing a SCID newborn who is not diagnosed until there is a serious infection can range from $500,000 to well over $4.5 million, while the cost of conducting a transplant for a SCID infant who is not sick is usually less than $100,000.

 The budget signed by Governor McCrory provides $440,000 to the Department of Health and Human Services for equipment and supplies needed to expand newborn screening to include SCID. This brings the total amount available for newborn screening to $24.4 million in the 2015-2016 fiscal year.

 North Carolina joins 26 other states in screening for SCID in newborns.

• Contact: Crystal Feldman
•     govpress@nc.gov