Newborn screening saves or improves lives – 12,000 each year, to be specific. Every year over four million babies born in the United States have their heels pricked during the first days of life to check for certain devastating conditions that are not otherwise apparent at birth. The small number of babies who test positive for those conditions may suffer serious and irreversible damage without early detection. Newborn screening enables health professionals to identify and, in most cases, treat those babies allowing them to grow up to live healthy, normal lives. The newborn screening program is one of our nation’s greatest public health achievements, but that doesn’t mean it is perfect.
Last year a series in the Milwaukee Journal Sentinel drew public attention to some of the areas in which the newborn screening program needed to improve. That story and a recent editorial in USA Today focused on the amount of time between specimen collection, testing and reporting of results. Timeliness is critical for the newborn screening program to be a success, and we acknowledge the valuable contribution these articles have made.
Continual quality improvements – including timeliness – have been and continue to be a priority for public health laboratories, the agencies responsible for identifying and reporting positive newborn screening test results. In fact, APHL recognized the efforts of many state programs during the 2014 Newborn Screening and Genetic Testing Symposium. Many state newborn screening programs have conducted hospital site visits; conducted targeted outreach to lagging performers and publicly recognized top performers; provided hospitals and other specimen submitters with guidelines for collection of specimens; reinforced regulatory requirements; and provided training for use of overnight courier shipping software. Program changes like these in states around the country have significantly improved specimen transit times.
APHL and its members have collaborated with the Department of Health and Human Services Discretionary Advisory Committee on Heritable Disorders in Newborns and Children to develop updated recommendations on timeliness guidelines. These activities occur in tandem with a series of other quality improvement activities including proficiency testing, evaluation of emerging technologies and implementation of quality practices pertaining to screening, confirmation and results reporting.
I am proud of the work state newborn screening programs are doing every day. We do not take the public health laboratories’ role in this life-saving program lightly, and I thank the staff for their dedication to improving it. Our focus is on the babies – it always has been and always will be.