Nearly 40,000 babies are born with congenital heart disease each year in the U.S., making it the most common birth defect. Thanks to advancements in medical care and treatment options, more than 90 percent of these patients now survive into adulthood. After years of medical specialty societies and patients advocating for universal screening of critical congenital heart disease (CCHD) in newborns, pulse oximetry has finally become routine in the majority of states.

Pulse oximetry has proven to be a safe, effective, inexpensive and noninvasive method of screening for this common defect, but it has been a long road to ensuring its widespread use. Legislative efforts ramped up in 2011 when Health and Human Services Secretary Kathleen Sebelius recommended adding CCHD to the Recommended Uniform Screening Panel, a list of hereditary and congenital conditions that are recommended nationally for inclusion in each state’s newborn screening program. Following the recommendation, the ACC, American Academy of Pediatrics and American Heart Association jointly released a whitepaper on the benefits of pulse oximetry testing.

Over the course of the next two years, 35 states successfully enacted legislation requiring CCHD screening. Maryland, New Jersey and Indiana were the first to step up to the plate. In 2012, six more states adopted laws and 26 states have adopted laws so far this year. The District of Columbia also requires CCHD screening. Three other states have legislation pending. “Today, a growing number of states are stepping up to require this test, offering another tool for early diagnosis of our country’s No. 1 birth defect,” wrote ACC President John Gordon Harold, MD, MACC, in a recent New York Times letter to the editor. “It’s time for the rest of the country to follow suit.”

State lobby days are crucial for educating lawmakers about the importance of mandatory screening and expanding legislation to all 50 states. During a recent lobby day in Pennsylvania, Thomas Chin, MD, FACC, took a hands-on approach by demonstrating first-hand how screenings are performed. Efforts by Chin and other advocates helped progress legislation that had been sitting stagnant in a committee and a hearing on the bill is now set for this fall.

Earlier this year, ACC’s Ohio Chapter held its annual Legislative Day, bringing together cardiologists, cardiac care associates, practice managers and pharmacists to advocate for a host of issues impacting cardiology, including CCHD screening. While the delegation was at the state Capitol in Columbus, the senate debated and passed a pulse oximetry bill on the spot. This example underscores the impact grassroots efforts have on progressing important legislation.

CCHD screening is a hot issue on the international level as well. “Globally, Asia, Europe and Australia are making major strides towards implementation,” notes Gerard R. Martin, MD, FACC, a leader in pulse oximetry legislation efforts. “A recent letter in the Lancet is calling for a uniform policy in Europe,” he adds.

Moving forward, the ACC will continue to engage with partners such as Mended Hearts and Mended Little Hearts to ensure the voice of CCHD patients and caregivers is heard on the state level as well as Capitol Hill.