Implementing Critical Congenital Heart Disease Screening Policies

According to the Centers for Disease Control and Prevention, it has been estimated that at least 280 infants with unrecognized critical congenital heart defects (CCHD) are discharged each year from newborn nurseries in the U.S. Pulse oximetry newborn screening, a simple bedside test to determine the amount of oxygen in a newborn’s blood and the pulse rate, can identify some infants with a CCHD before they show any signs.

The ACC has long advocated for the universal coverage of CCHD screenings for newborns. Studies have shown that this approach to early detection of more subtle forms of congenital heart disease can prevent related complications and promote early diagnosis and treatment.

In September 2011, HHS Secretary Sebelius approved adding screening for CCHDs to the Recommended Uniform Screening Panel, which has been invaluable information as states pursue this policy. Members of the ACC’s Adult Congenital and Pediatric Cardiology Section including Gerard Martin, MD, FACC, worked with HHS to develop recommendations for the implementation of the screenings.

At the state level, there has been a push by several of ACC’s chapters working with other pediatric and cardiovascular societies to introduce policies for the newborn screenings.

Just last week Virginia Gov. Bob McDonnell originally vetoed a bill supporting legislation that would establish a public-private work group to develop a program for screening newborns for critical congenital cyanotic heart disease using pulse oximetry monitoring and providing appropriate early intervention services to infants identified as having the disease. But upon further review and discussions with key stakeholders led by ACC Staff including Delegate Patrick Hope, the ACC Virginia Chapter and others including Mended Little Hearts and AHA, McDonnell decided to implement an executive order that would put the congenital heart disease screening policy in place and officially signed the order today. This is a great example of how a strong grassroots push can be effective and instrumental.

To date Indiana, Maryland, New Jersey, Tennessee, and West Virginia have approved plans that will assure universal testing of newborns for congenital heart disease. The New Hampshire legislature recently passed a CCHD screening bill, which will be reviewed by an oversight committee prior to the Governor’s evaluation and signature, and the Connecticut Senate recently passed a bill to require CCHD screening. The health departments of Michigan, Ohio and Alabama are also currently crafting regulations to require the screening.

The ACC’s State Government Relations team is currently strategizing with stakeholders to advance the screening requirement in several other states. We’ve come a long way over the past few years as the implementation of policies for CCHD screening becomes more widespread.

< Back to Listings