Cardiovascular Advances in Research and Opportunities Legacy Act

Floor Speech

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Mr. BARR. Mr. Speaker, I thank my colleagues for their support of this legislation.

I rise today in support of an issue obviously that is very near and dear to my heart, our legislation, the Cardiovascular Advances in Research and Opportunities Legacy Act, or the CAROL Act, named after my late wife, Carol Leavell Barr.

Mr. Speaker, my life changed forever, and the lives of my daughters and Carol's family and friends' lives changed forever, when we lost her, my best friend, to sudden cardiac arrest on June 16, 2020. She was only 39 years old.

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

We were told that this was no big deal, so there was no cause for alarm for most of her adult life. We knew about her condition, but it was not cause for alarm. Even her doctors were not alarmed by the condition because of the very low incidence of sudden cardiac death with this.

The end of her life didn't define her life. I want to just share a little bit. I mean, obviously, this is a picture of her. She was beautiful, inside and out. She had an amazing smile. She was smart. She was fun. She was accomplished professionally.

Ironically, she was in pharmaceutical sales, and she was in the cardiovascular space. Her motivation and willingness to give back to the American Heart Association and charity, a lot of that had to do with the fact that she was aware that she had this underlying preexisting heart condition.

She was an organized list maker. She would always say: Let's just get it done.

She loved to read, travel, and cook for her family.

She loved Kentucky. She loved the Kentucky Derby, horses, and her beloved Wildcats.

She loved her country, and she loved her family. She loved her friends and especially our girls, and that was her gift: motherhood. Motherhood was her gift.

She was a selfless giver to them, to me, to all of her friends, and we have gratitude in our grief. We have gratitude for the 39 wonderful years we did have with her.

We miss her terribly, but we are grateful and blessed that we now have this to extend and amplify her legacy, this bill that is going to help save lives, so her selfless giving goes on. I thank all my colleagues for helping advance this.

Since this was such a rare situation where someone would die of MVP, what were the factors that put Carol in the 0.2 percent versus the 99.8 percent category? That was the question that I had after her passing.

In my discussions with top cardiologists, medical experts, researchers, and advocates following her passing, I learned the extent to which the medical community seriously lacked the answers to that critical question.

Sadly, over 25,000 of our fellow American citizens die each year from heart valve disease, primarily due to underdiagnosis and undertreatment of the condition, which was obviously the case with our Carol.

Inspired by her extraordinary life, my family and I decided to take action and introduce the CAROL Act to better equip our medical community with the resources needed to develop predictive models, inform communities, and possibly save the lives of other loved ones.

Specifically, the CAROL Act authorizes a grant program administered by the National Heart, Lung, and Blood Institute to support research on valvular heart disease, including MVP.

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

It is through this research, Mr. Speaker, that we can help identify Americans like Carol 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 the symptoms of valvular heart disease and effective strategies for preventing sudden cardiac death.

Mr. Speaker, I am grateful and honored that the CAROL Act earned the bipartisan cosponsorship of 180 Members of this body.

I am grateful for so many others. I am grateful for Congresswoman Kathleen Rice from New York, who I worked with in a bipartisan way on the Energy and Commerce Committee. Obviously, Dr. Joyce was a powerful spokesperson for this legislation in committee. I appreciate Chairman Pallone's partnership in this. Ranking Member Cathy McMorris Rodgers and my colleague from Kentucky who was friends with Carol, Brett Guthrie, they really contributed mightily to this.

My friends Kevin McCarthy, Steve Scalise, Brad Wenstrup, and Bill Huizenga, they really helped us push it forward.

I thank Steny Hoyer, who himself lost his wife at a young age, and I think he really helped push this forward.

In the Senate, Leader Mitch McConnell obviously knew Carol very well, and his wife, Elaine Chao, was good friends with Carol. He was really instrumental in pushing it through the Senate.

Arizona Senator Kyrsten Sinema lost a sister to a condition similar to Carol's, and she was our lead Democrat in the Senate. I just saw Kyrsten in the airport. She gave me a big hug to celebrate this great day.

Finally, I thank Claire Osborn of my staff, who worked tirelessly on this bill and made it a personal cause of hers. We would not be here today without her tireless efforts.

The American Heart Association, the American College of Cardiology, WomenHeart, Edwards Lifesciences, and over 20 additional medical groups that supported our bill, I thank them for their advocacy.

Carol's greatest legacy will always be our two beautiful daughters, Eleanor and Mary Clay. However, today, I hope that my colleagues in the House will help me enshrine her legacy in a way that helps others avert the tragedy that has profoundly impacted our family.

We thank all of our colleagues for helping advance this legislation, and we are so grateful for the continued extraordinary legacy of Carol Barr.

Mr. Speaker, I urge my colleagues to support this bill.

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