NC H698

Commission for Public Health must amend rules under G.S. 130A-125 to add screening tests for severe combined immunodeficiency (SCID) and other T-cell lymphopenias to North Carolina's newborn screening program.

SCID, also known as "bubble boy disease," is a hereditary genetic immune deficiency that causes infants to lack immunity against bacteria, viruses, and fungi, typically resulting in death from opportunistic infections without early treatment.

Early diagnosis before 3.5 months of age enables bone marrow transplants with a 94% survival rate, compared to 70% survival if performed after that age, and costs approximately $100,000 versus $500,000 to $4,500,000 for treating diagnosed infants with serious infections.

As of November 2014, 26 states screened for SCID and North Carolina's Newborn Screening Advisory Committee unanimously approved adding SCID to the screening panel in January 2011, though implementation had not yet occurred.

The bill became effective upon ratification on September 23, 2015, with Governor Pat McCrory's approval on October 19, 2015.