Dear Newborn Screening Community:
We have just been informed by the Maternal and Child Health Bureau, Health Resources and Services Administration that the Secretary of Health and Human Services has adopted the Discretionary Advisory Committee on Heritable Disorders in Newborn and Children’s (DACHDNC) recommendation to add Pompe to the recommended uniform screening panel (RUSP).
In a letter to Dr. Bocchini (Chair, DACHDNC), Secretary Burwell reviewed the DACHDNC report on Pompe as well as the Interagency Coordinating Committee on Screening in Newborns and Children (ICC) report for additional input regarding implementation. She also commended the DACHDNC on their review and analysis of the benefits and harms of newborn screening for Pompe.
The ICC Report noted challenges associated with implementation of state newborn screening for Pompe disease. However, the ICC emphasized that over time, adoption of this recommendation will help increase the number of newborns screened and decrease the morbidity and mortality of infants born with Pompe disease.
Secretary Burwell noted in her letter to Dr. Bocchini that the addition of Pompe disease to the RUSP is not a requirement for states to implement screening, but rather a recommendation. The HHS Secretary recognizes the complex issues surrounding newborn screening for Pompe disease and encourages federal agencies to support states to increase capacity and implement statewide screening.