Critical congenital heart disease screening will now be included on the Recommended Uniform Screening Panel, Secretary of Health and Human Services Kathleen Sebelius said Sept. 21. The move will work toward providing universal screening to newborns, in hopes to earlier detect heart defects.
Previously, Sebelius ruled that the screening recommendations were not yet ready for adoption. In fact, Sebelius referred the secretary’s Advisory Committee on Heritable Disorders in Newborns and Children’s recommendations to the Interagency Coordinating Committee on Screening in Newborn and Children for additional review.
Sebelius asked the committee to address gaps within the recommendations including: identification of effective screening technologies, development of diagnostic processes and protocols, education of providers and the public and strengthening service infrastructure needs for follow-up and surveillance.
After review, Sebelius concluded that “evidence gaps should receive closer attention as implementation occurs," however, despite these gaps, still decided to adopt these recommendations.
“I am taking this action because I believe that as we move forward, these activities will add important foundational information regarding the potential impact of implementing universal screening for CCHD, strengthen the platform on which to build the critical infrastructure for universal screening, and provide states with the data necessary to consider requiring that this condition be added to their existing newborn screening programs,” Sebelius said in a letter sent to the committee chair of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.
However, Sebelius said that important issues will need to be addressed with these decisions including:
- What will the impact be on state health departments, including staffing needs, to implement this program?
- What are the roles of the state health departments?
- What is the capability to ensure that all babies are screened and their results communicated to providers?
“Sebelius did the right thing,” said Gerard Martin, MD, immediate past-chair of the Adult Congenital and Pediatric Cardiology Council of the American College of Cardiology (ACC). “Physical examination alone has not been able to detect Critical Congenital Heart Disease in all babies. Pulse oximetry, an inexpensive, non-invasive test, in addition to a careful physical examination will improve detection.”
The Newborn Coalition also applauded the recommendation and said that heart defects are a major issue, as they are the leading cause of birth defect-related deaths in the U.S. The coalition said that one in 100 newborns has heart defects, and 25 percent of those are diagnosed as CHD. Four thousand newborns die each year from heart disease.
“The only thing worse than having a newborn diagnosed with heart disease is having a newborn go undiagnosed with heart disease,” Annamarie Saarinen, board chair of the Newborn Coalition, said in a statement.