Cardiovascular Advances in Research and Opportunities Legacy Act

Floor Speech

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Mr. BARR. Madam Speaker, I rise today in support of an issue that is obviously very personal to me, my legislation, the Cardiovascular Advances in Research and Opportunities Legacy Act, or the CAROL Act.

I am just overwhelmed and so grateful to my friends and colleagues on both sides of the aisle. I thank them for their kindness, their kind words about Carol, and their advocacy for this very important legislation.

I do ask for the indulgence of the House and my colleagues to speak about a topic that is very personal. I have become, unfortunately, very passionate about it.

My life and my girls' lives were changed forever when we lost Carol, who was my best friend, and that was a sudden cardiac event on June 16, 2020. She was only 39 years old. This was just a few weeks before her 40th birthday.

The end of her life didn't define her life. When people hear about the CAROL Act, I want them to know not just about the legislation. I want them to know about Carol, the woman who inspires it, because so much of her life really continues to make a positive impact on all of us.

First of all, Carol was obviously a beautiful person, but her beauty on the outside was not as much as it was on the inside, as beautiful as she was as a person.

She was an amazing friend and daughter and wife. She was so supportive. Everybody who serves in this body knows it takes so much support from a spouse, and I witnessed that every day both in this job and out of this job and in the 12 years that we were married.

She was a supporter. She was a selfless giver. And she was a giver not just to me and my girls, she was a selfless person with everyone, with her friends, with her family. She was always going out of her way to do for others and put others ahead of herself.

Professionally she was incredibly accomplished. She worked in the pharmaceutical industry. She was a planner, a list maker, a detailed organizer, which was great for me because I wasn't any of those things. She complemented me. She kept me going. She kept me on time and organized. I was not a list maker, and she was. She was a go-getter.

As my friend, Whip Scalise, said, she had this great saying, and she said it to me the weekend before she passed away: ``Just get it done.''

But of course, her greatest legacy was her motherhood. She was defined by her motherhood of our girls, Eleanor and Mary Clay. She was the best mother in the world. Now, she only had 9 and 7 years, but she packed it in, and she left a great mark on those kids, and they are her greatest legacy. I am so proud of our girls. And my youngest, Mary Clay, always says: ``Daddy, when you give those speeches, why don't you talk about me? And, Mary Clay, I am talking about you, and I am talking about your sister, Eleanor, right now because you are your mother. You shine through, and your mother will continue to shine through you all.

So what is Carol's story?

At a young age, in seventh grade, she was diagnosed with an underlying condition called mitral valve prolapse or floppy valve syndrome. This is a typically benign condition that results in sudden cardiac death in only 0.2 percent of the cases.

The odds were decidedly in her favor, and she knew that, and she talked about that, and her physicians talked about that. They said it was no big deal. She said it was no big deal. I said it was no big deal because everybody thought it was no big deal. We just had to monitor it, and we did.

And Carol sadly was one of those unlucky people in that 0.2 percent category. She did have a near fainting episode, and she got a Holter monitor, and in early 2020 she sought help from a cardiologist, and in the medical notes the cardiologist said, yes, we need to further investigate this. Not urgent, but we need to investigate this. We need to get an echo stress test after the virus resolves.

And there was no incident. There was no chest discomfort after that. There was nothing between March and, sadly, June 16 when I came home that night.

So what factors placed Carol in the 0.2 percent versus the 99.8 percent category?

That is what we don't know. That is what we need to know for other families.

So in my discussions with top cardiologists, medical experts, researchers, and advocates following Carol's passing, I learned the extent to which the medical community seriously lacks answers to this critical question.

And sadly, over 25,000 Americans die each year from heart valve disease primarily due to underdiagnosis and undertreatment of the condition.

So inspired by the extraordinary life of my wife and also many experts, the cardiologists who contributed to this work with the help of experts at the National Heart, Lung, and Blood Institute, we introduced the CAROL Act to better equip our medical community with the resources needed to develop predictive models, inform communities, and save the lives of other loved ones.

So specifically, the CAROL Act authorizes a grant program administered by the National Heart, Lung, and Blood Institute to support research on MVP.

This legislation marshals the full power of 21st century medical innovation and encourages the utilization of technological imaging and precision medicine to generate data on individuals with valvular heart disease.

It is through this research that we can help identify Americans at high risk of sudden cardiac death from valvular heart disease and develop prediction models for high-risk patients, enabling interventions and treatment plans to keep these patients healthy throughout their lives.

Additionally, the CAROL Act will instruct the Centers for Disease Control and Prevention to increase public awareness regarding symptoms of valvular heart disease and effective strategies for preventing sudden cardiac death.

Madam Speaker, I am honored and so grateful that this bill, the CAROL Act, has earned the bipartisan support of over 180 Members of this body and all of my colleagues on both sides of the aisle who have been critical to bringing this legislation to this point. The speakers here today, I am so humbled and grateful to them. To my good friend, Congressman Guthrie, who was a dear friend of my wife, to Minority Leader Kevin McCarthy and Whip Scalise, both of whom knew and counted Carol as one of their friends, my good friends, Kathleen Rice and Jimmy Panetta on the other side, who have been just awesome to work with on this. Chairman Pallone, I really appreciate your leadership and Leader Hoyer, as well; my good friends Brad Wenstrup and Bill Huizenga, who have been really helpful to me in this difficult time. And I am also grateful for my friend and fellow Kentuckian, Senate Republican Leader Mitch McConnell, who is leading the companion bill in the Senate, and Arizona Senator Kyrsten Sinema, who I served with in my class here; sadly, Kyrsten lost a sister to a similar condition, and they are leading the companion legislation in the Senate.

And, finally, I acknowledge and thank the over 20 medical groups who supported our bill, including the American Heart Association, the American College of Cardiologists, and WomenHeart, and the scores of doctors that we consulted who really were instrumental in helping us, and I will just say a few: Dr. Mary Sheppard, Dr. Alan Daugherty, and Dr. Nezar Falluji in the district that I represent at the University of Kentucky; also Dr. Gary Gibbons and his team at the National Heart, Lung, and Blood Institute; Dr. Francesca Delling at the University of California, San Francisco; and Dr. Bonow at Northwestern. They were all instrumental in crafting this legislation.

Madam Speaker, in conclusion, Carol Barr's greatest legacy will always be our two daughters, and she wouldn't have wanted this. She doesn't want this as her legacy. She wanted to raise our kids. But I will tell you this, even though the doctors said that her heart gave out, you know, because of her life and her legacy and this bill, she is going to be remembered as having the most powerful heart of all, of anyone we have ever met. I hope my colleagues in the House will help me move one step closer to enshrining that legacy in a way that will help others avert this tragedy that has so profoundly affected my family.

And, honey, we are getting it done.

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