If not screened and diagnosed, babies with Severe Combined Immunodeficiency (SCID), also known as “Bubble Boy Disease,” do not typically survive past their first birthday.
That’s why the Pennsylvania Medical Society (PAMED) applauds the recent addition of SCID to the state Department of Health (DOH) newborn screening and follow-up program.
Effective July 1, 2013, SCID will be added to the list of diseases for which follow-up services are required for newborn children with abnormal, inconsistent, or unacceptable screening test results.
PAMED collaborated with the Pennsylvania Allergy and Asthma Association to support this addition, and met with DOH several times to monitor movement on this issue.
The Pennsylvania Allergy and Asthma Association is working with a task force to facilitate communication between primary care providers and pediatric immunologists who can promptly verify positive screens and refer infants to treatment centers for lifesaving transplant or gene therapy.
“Allergists and clinical immunologists are delighted that the Pennsylvania DOH has added SCID to the list of diseases for which follow-up services are required,” said Denise Kalman, DO, an allergist and immunologist at Crozer Keystone Health Systems. Dr. Kalman is the asthma and allergy specialist representative on PAMED’s Specialty Leadership Cabinet.
“This major accomplishment would not have been possible without the hard work of PAMED’s physician leaders and staff,” said Dr. Kalman.
PAMED’s position is consistent with the U.S. Department of Health and Human Services, which announced the addition of SCID to the core panel of 29 genetic diseases in May 2010.