Most of us are familiar with Kübler-Ross’ five stages of grief.
In the last few months, Barr’s worked through denial, anger, bargaining, depression and acceptance, but there’s still one more step to go: lawmaking.
“I think this CAROL Act has become part of my grieving process, to be honest with you,” the Kentucky Republican said, referring to his bill to support research into the heart condition that killed his wife.
It’s not uncommon to dive into work after a loss, but few get to do so while honoring the departed, and fewer still in a way that might help others avoid a similar fate.
The Cardiovascular Advances in Research and Opportunities Legacy, or CAROL, Act would provide $20 million in research grants through the National Institutes of Health for research into heart problems like mitral valve prolapse, a typically benign condition that affects around 15 million Americans and can trigger life-threatening arrhythmias and sudden cardiac death in 0.2 percent of people who have it.
Valvular heart disease kills around 25,000 Americans a year. Many, like Carol, show no outward signs that anything is wrong. “We don’t know why, but it happens more frequently with younger women,” Barr said.
Barr’s bill would fund research into identifying the potential risk factors to differentiate between a nonthreatening heart murmur and a deadly condition.
“I am convinced after learning a lot about this and talking to dozens of cardiologists and other scientists and investigators in this area since she died that her death was preventable,” Barr said. “Other people with her condition can live with valvular heart disease or mitral valve prolapse with the proper types of timely interventions, surgical or otherwise.”
Carol was first diagnosed with the condition in middle school. It didn’t keep her from playing tennis or captaining the dance team in high school, from joining a sorority in college, from marrying Barr and having two little girls. But there was an incident in 2016 — she felt faint, out of nowhere — and then another in 2018 and another again in March 2020.
After that last spell, Barr insisted she see a cardiologist out of an abundance of caution, even though he wasn’t actually worried. “She just came home, took a nap, and everything was fine, so it wasn’t really that alarming,” he said. “Of course, now looking back on it, that was a very significant event.”
Carol got a Holter monitor to track her heart rhythm, and soon after felt ill. The doctor read the monitor’s results and prescribed some beta blockers to lower her blood pressure. He also told them Carol needed to get an echocardiography stress test.
But this was around the same time the coronavirus pandemic was beginning to sweep the nation. Five days before the cardiologist’s office called to recommend the EKG, Kentucky’s public health officials prohibited elective medical procedures. Carol didn’t have any noticeable symptoms and was taking her prescribed medicine, so there didn’t seem to be a rush, Barr said.
“We were not alarmed, we were not super concerned,” he said. “We had gone to the doctor. We thought we were taking care of it.”
Barr doesn’t blame the cardiologist or the health orders — though he thinks procedures like cardiovascular exams shouldn’t have been lumped in the same broad “elective” category as plastic surgery. But even if Carol had gotten the EKG, and even if it showed something seriously wrong, doctors still might not have recommended an emergency procedure — heart surgery is a pretty extreme intervention, especially for someone so young.
And so, on a normal Tuesday in June, Andy Barr headed off to his district office while Carol worked on a presentation at home.
“I left her that morning in our home office, blew her a kiss, told her I loved her, she told me she loved me, but we were both very busy, so there wasn’t extensive conversation,” Barr said.
That would be their last goodbye.
Barr knew something was amiss when Carol didn’t pick up the kids from her mother. By the time he got home and found her, it was too late.
After Carol’s death, Barr learned that diagnosing a deadly valvular condition almost comes down to luck.
“That’s not good enough,” Barr said. “We need to equip our cardiologists with better information so that they can say, OK, this person needs it more, is a higher risk person, we ought to look more closely at a more intense treatment program, at more routine echocardiograms, and maybe at surgical intervention earlier than we would normally think that we need to.”
Barr called the outpouring of support from his colleagues “overwhelming.” So far, the bill has over 120 co-sponsors, including more than 40 Democrats. Many of the supporters knew Carol, having met her on a CODEL to Japan shortly before the pandemic began. That includes Diana DeGette of Colorado, a high-ranking Democrat on the Energy and Commerce Committee, which has jurisdiction over the bill. Barr said Chairman Frank Pallone Jr., D-N.J., was “very positive” about the bill, along with House Majority Leader Steny Hoyer, D-Md., who controls the chamber’s floor schedule.
Barr said he hopes Arizona Democrat Kyrsten Sinema, a friend from her days in the House, will co-sponsor the Senate version.
Even with bipartisan support, getting any piece of legislation through Congress is an ordeal, and it’s harder still when you’re the minority party. But Barr draws inspiration from his wife.
“She always would tell us, ‘You gotta just get it done,’ which is, frankly, a motivator for me to just get it done,” he said.