Matthew Mangine and Rep. Andy Barr are tied together by unimaginable loss and one singular, horrible date: June 16, 2020.

That’s the day Mangine, a dad from northern Kentucky, lost his 16-year-old son, who collapsed at a soccer practice and later died from a cardiac event. It’s also the day Barr’s wife, Carol, collapsed on a Zoom call and later died, also from a cardiac event. She was 39.

Last month, Mangine went to Barr’s Washington, D.C., office and asked him to back legislation that would increase access to automated external defibrillators in schools. He argued a defibrillator could have saved his boy’s life. When he mentioned the day of his son’s death, Barr looked stunned.

“That’s the exact day we lost Carol,” the Kentucky Republican said.

This is the third Congress in a row that lawmakers have introduced legislation to promote access to emergency defibrillators in schools across the nation through grant programs.

But this year, lawmakers like Barr, who have seen their lives upended because of sudden cardiac arrests, may make the difference in that bill’s success. 

“This is an issue that transcends party affiliation,” House lead sponsor Rep. Sheila Cherfilus-McCormick, D-Fla., said. “We’re getting the feedback that before the end of the year it should be passed. 

“But we can’t stress enough the urgency — especially as our kids are moving into the summer playing sports.”

Federal efforts

The bicameral, bipartisan bill, introduced this session by Cherfilus-McCormick in the House and Cory Booker, D-N.J., in the Senate would create a federal standard for cardiac arrest response in schools by increasing student access to AEDs and developing emergency response plans.

When the legislation was introduced in the 116th and 117th Congresses, it didn’t even make it out of committee. 

But this Congress, the initial House version had more than 110 co-sponsors, including Barr, before it was incorporated into a larger bill aimed at increasing awareness of cardiomyopathy and helping schools deal with cardiac events. The Energy and Commerce Committee approved the larger bill in March.

In addition to promoting AEDs in schools, the larger bill, introduced by Rep. Frank Pallone Jr., D-N.J., includes requirements around CPR training. It also would require the Department of Health and Human Services to coordinate with the Centers for Disease Control and Prevention, patient advocacy groups and health professional organizations to develop educational materials for schools, teachers and parents. 

The Senate version of the AED bill has not moved out of the Health, Education, Labor and Pensions Committee. House lawmakers are hopeful that passing the bill in the House could spur the Senate to act.

The office of Senate HELP Chairman Bernie Sanders, I-Vt., did not respond to multiple requests for comment.

House staffers said it’s been difficult for the bill to pick up as much momentum in the Senate because of the bill’s price tag. Pallone’s bill would authorize $25 million per year for five years, from fiscal 2025 to 2029, including funding for the AEDs bill. 

But Cherfilus-McCormick’s office found a loophole so the bill doesn’t count as new spending, and is requesting funds through an expired grant program.

‘Damar Hamlin effect’

Advocates also credit the recent interest in cardiac arrest policy to what they call the “Damar Hamlin effect.”  

Americans watched live as the Buffalo Bills safety collapsed on the field in January 2023 and was then resuscitated with CPR and defibrillation.

In the days after the incident, the American Heart Association experienced a 600 percent jump in views on its CPR how-to webpage. In the months to follow, the NFL began providing CPR training for teams and local communities. And state legislatures’ interest in providing schools with defibrillators also jumped.

Sudden cardiac arrests, which are different from heart attacks, can happen to anyone and are often fatal without intervention. Only 10 percent of people who experience a cardiac arrest outside of a hospital setting survive, but if bystanders know how to use an AED or perform CPR, the chances of survival skyrocket to 44 percent, according to the national Cardiac Arrest Registry to Enhance Survival. 

About 23,000 children per year experience a cardiac event outside a hospital setting, and 40 percent of those incidents are sports-related. In schools with AEDs, about 70 percent of kids survive cardiac arrests, the American Heart Association found. 

One in 200 people have an underlying cardiac condition that can make them vulnerable to sudden cardiac death, said Dermot Phelan, a sports cardiologist in Charlotte, N.C. 

While not everyone with an underlying condition will experience a cardiac event, extended stress on the heart or a rush of adrenaline can trigger one. That’s why Phelan said it’s crucial for there to be an emergency protocol in athletics.

Phelan described what he calls an “exercise paradox” — people who exercise are likely to have healthy hearts and live longer lives, but sudden cardiac deaths are 25 percent higher in athletes versus nonathletes. 

Liability concerns

AEDs are generally a popular bipartisan issue, but state legislation to expand their scope has faced pushback from those who worry that placing the devices in schools is too expensive or creates too much legal liability. There’s also concern that bystanders are afraid to use the devices.

All 50 states and the District of Columbia include AED usage as part of their “good Samaritan” laws, which shield a bystander from civil liability for aiding someone in an emergency. But not all such laws completely protect people, argued AED compliance expert Richard Lazar, president of Readiness Systems. Depending on the state, a law may only cover limited activities, meaning AED cases gone wrong can end up in court.

“It’s a myth in the industry and among sellers of AEDs that good Samaritan protections exist when, in large measure, they do not,” Lazar said. 

Reps. Gerald E. Connolly, D-Va., and Scott Franklin, R-Fla., have introduced a bill to provide more civil liability protections related to the use of AEDs by providing broad protections to the person who used the AED as well as the owner. But the legislation hasn’t moved beyond introduction.

A personal issue on Capitol Hill

Barr’s wife Carol died in 2020 at age 39 from a sudden cardiac event caused by a mitral valve prolapse. Carol was diagnosed with her heart condition at a young age, but physicians told her that the condition was benign and not a cause for worry.

Carol Barr had just finished a work presentation on Zoom when her co-workers saw her collapse. Barr said when he left the house in the morning, it was just like any other day. You wouldn’t have known anything was wrong.

“That’s the thing about heart attacks. It’s like, ‘one minute you’re perfect, the next minute you’re gone,’” Barr said.

The ordeal led Barr to lead support of a law passed in 2022 to authorize a National Institutes of Health grant program to support research on valvular heart disease. That law also instructed the CDC to increase public awareness of sudden cardiac death. The law is called the Cardiovascular Advances in Research and Opportunities Legacy Act — the CAROL Act.

This year, Barr led a letter, along with 21 other bipartisan House members, asking the House Labor-HHS-Education Appropriations Subcommittee to provide $20 million in fiscal 2025 for NIH research on valvular heart disease as part of his bill. He also asked the committee to provide $5 million to expand the Cardiac Arrest Registry to Enhance Survival and $3 million for the CDC’s Heart Valve Disease Education and Awareness campaign. 

Barr is not a co-sponsor of Pallone’s legislation but he said he is a supporter. He said he thinks the bill could easily pass under suspension because of the personal nature of the issue, and plans to bring up the topic with Majority Leader Steve Scalise, R-La., at their next meeting. 

“I know other members have had children or other family members who have had cardiac events,” Barr said. “I choose to go very public … it’s a legacy.”