Cardiovascular Advances in Research and Opportunities Legacy Act

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.

Mr. Speaker, I want to thank my friend for yielding, and I want to thank him for his friendship and his work.

Mr. Speaker, I rise in support of this legislation. I want to thank Congressman Barr for his leadership in bringing this legislation to the floor in a strong bipartisan way. I am proud to support the CAROL Act in honor of Andy's lovely wife, the late Carol Barr.

Like everyone who knew her, we know the moment and where we were when we heard of her passing. It was sudden. It was unexpected. It was something no one ever thought could happen.

If you ever met her, you were her friend. She was a kind and graceful person with a heart for service. As I speak today, I remember her laugh.

Throughout her own career and working with Andy, Carol devoted her time and energy to giving back to the community. She had a service heart. It was all about the Sixth District.

I met her years ago. I met her when she first knew Andy, before either daughter was born. I was able to watch them grow and watch the look in their mom's eyes.

I remember one time when we were there, she was holding Eleanor. Eleanor was showing me her parade wave.

Carol led a highly respected career in sales at Pfizer. She served as executive director for the Henry Clay Center for Statesmanship; and she volunteered at the Junior League of Lexington and the University of Kentucky's College of Communication and Information National Advisory Board.

Her faith, her patriotism, and her generosity toward her neighbors were manifest. For those who attended the time to honor her life, speaker after speaker after speaker could tell you the moment in time that Carol walked into their life. The interesting part when they told it, their life got better, but Carol never walked out of their life. That was the interesting part.

Oh, how she loved Andy and her two beautiful girls, Eleanor and Mary Clay.

This disease strikes you at a time you don't even know. You just come back from doing something most all of us do--the family photos, even getting ready for a campaign. You look at her face, and you look at the children's faces.

And you know Andy. Carol did all the work. Carol prepared everybody. Andy is a great legislator, but Carol made everything happen.

I love when I meet people early on. I always ask, how did you first meet? I asked Andy and Carol. Andy would tell you the story. He saw her, and he could tell you the moment it happened. He had a plan. His plan, he had it all mapped out. He was going to ask for her business card. He just didn't realize she didn't have one.

The problem with Andy is, he didn't have a backup plan. But the great thing about it is, God had already taken care of this. God already had a plan for Andy and Carol. Eight weeks later, he brought them back together again. This time, Andy didn't let her get away. They were married for more than 13 years.

I cannot tell you the loss we feel. Andy feels it every day. The community feels it every day. There is not a day that goes by that we don't pray for him and the girls. There are times when I would pick up, just call and check on him. I remember doing it recently. He said it was a good weekend. He took the girls, just the girls and him, and went to the place that the Barr family would always go to. It was in the woods. It was a time of reflection.

There are others in this body that have had to deal with this type of loss, a loss in their own family. We all know the different ways to suffer. We are all familiar with the five different stages of grief-- the denial, the anger, the bargaining, the depression, and the acceptance.

Andy didn't have time for any of them. Andy channeled his grief into what I believe is the sixth stage, the lawmaker, and he did something important, working to honor Carol today but save lives for everybody else in the future.

We are going to do work today that most people when they talk about Congress wish we did every day. There is not going to be partisanship. I think if you met Carol, it didn't matter what side of the aisle you were on. It would be harder to attack Andy. We are going to save lives for the future, and that is exactly what this bill does, Madam Speaker. It saves lives.

More than 25,000 Americans die from valvular heart disease every year. Many, like Carol, show no outward signs. You don't have a warning. You kiss your spouse good-bye, and you are going to go down the street. The next thing, something goes wrong.

Too often, the diagnosis comes down to luck. Carol got an indication, but we had COVID. We said to wait to have a procedure.

We must do better. Our doctors and families deserve to have better information so they can make the right decisions about treatment. The CAROL Act will help get them the information by providing $20 million in research grants to study valvular heart problems.

Andy, your work to pass this bill in honor of Carol has truly been an inspiration to all of us. Of all the moments that I had an opportunity to spend with them, I always reflect on this one. Like many of you, collectively, we will do a trip to Israel, legislatively, foreign policy. There was this moment in the trip--and you know the trip. It is filled with meetings after meetings after meetings. You are in a different time zone, and it gets tiring. You are up early until late at night.

Carol would always be smiling. We were visiting this one facility with the Sermon on the Mount where Jesus had spoken. I remember standing next to her, reading the story in the Bible. I remember her smile. More importantly, I remember her love for all.

I know she is with us today. I know she is proud of Andy. She is proud of Eleanor and Mary Clay. Her work and life on this Earth was not long, but her impact was great.

Today, what we are doing is right. Today, what we are doing is going to make tomorrow better.

Andy, your dedication, which is so ably represented in this important bill, is a fitting tribute to Carol. She had a heart for service. Anyone who knew her will tell you that. Today, we are going to honor her memory, and we are going to salute you. We are going to salute that Carol made a difference yesterday, today, and tomorrow.

She will not be forgotten, be it through the caring, the sweetness, the kindness of her daughters; but, more importantly, the love and respect of her husband, who, in a very tragic situation, could go a lot of different paths. But I know he wondered what Carol would want to be done, and that is exactly what he did. He put himself in a position to make the world better and to make fewer families to have that same call.

I respect everybody I serve with. People go through a lot of challenges. There are very few people in my life who I have ever witnessed the dignity and the respect and the honor that Andy has given to Carol for her life and her memory.

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.

Madam Speaker, pursuant to House Resolution 1254, I call up the bill (H.R. 3771) to amend the Public Health Service Act to provide for research and improvement of cardiovascular health among the South Asian population of the United States, and for other purposes, and ask for its immediate consideration in the House.

Madam Speaker, I ask unanimous consent that all Members may have 5 legislative days in which to revise and extend their remarks and add extraneous material on H.R. 3771.

Madam Speaker, I yield myself such time as I may consume.

Madam Speaker, I rise today in support of H.R. 3771, the South Asian Heart Health Awareness and Research Act of 2022. I thank Representative

Jayapal and the bill's bipartisan sponsors for their work on this important piece of legislation.

Heart disease, Madam Speaker, claims a life in the United States every 34 seconds. In 2020 alone, heart disease resulted in the deaths of 697,000 Americans. These statistics, which are troubling by themselves, are further shaped by systemic health disparities. Black men have a 70 percent higher risk of heart failure compared to White men, and Black women have a 50 percent higher risk compared to White women. Heart disease is the leading cause of death among Hispanic men, and for Hispanic women, heart disease is second only to cancer.

The South Asian community is also disproportionately impacted by this deadly disease. While South Asians comprise 23 percent of the world's population as of 2020, they carry approximately 60 percent of the world's global burden of heart disease. The increased risk and disproportionate impact that heart disease has on the South Asian- American community in this country is often obscured by the lack of data specificity, as South Asian Americans are often grouped with other Asian Americans.

So H.R. 3771 takes a multipronged approach to address these trends. The legislation allows States to direct culturally appropriate resources to communities that are disproportionately impacted by heart disease through grants, with the goal of increasing awareness and promoting prevention. The legislation also supports research efforts on cardiovascular disease, type 2 diabetes, and other heart-related ailments among at-risk populations.

H.R. 3771 is a bipartisan, commonsense approach to an undeniable heart health and research gap for the South Asian-American community. These important investments will ensure a greater understanding with respect to individuals disproportionately at risk for heart-related disease and will help in our efforts to address disparities in heart health currently experienced by many Americans.

Madam Speaker, I urge my colleagues to support this important legislation.

I just want to thank Representative Jayapal, again, because, as you know, Madam Speaker, I have a very large Asian-American community, and many of them, particularly the healthcare providers, have pointed to the problems disproportionately with heart disease.

Madam Speaker, I reserve the balance of my time.

Madam Speaker, I yield such time as she may consume to the gentlewoman from Washington (Ms. Jayapal), who is the bill's sponsor.

Madam Speaker, I yield such time as she may to consume to the gentlewoman from California (Ms. Chu).

Madam Speaker, I yield myself the balance of my time.

Let me just thank, again, Ms. Jayapal and others on a bipartisan basis. This is a very important bill for my district in many areas where we have a large South Asian community.

And one of the things that Ms. Chu mentioned was the data. Oftentimes, we don't have the data, and just getting the information, in itself, is going to be significant as a result of this bill. I ask for support on both sides, and I yield back the balance of my time.

Madam Speaker, I have an amendment at the desk that was made in order by the rule.

Yes, I will be the designee in lieu of Ms. Sherrill.

Madam Speaker, I rise today in support of the underlying bill, H.R. 3771, and to offer an amendment that focuses on the impact of COVID-19 on rates of heart disease in at-risk communities.

The COVID-19 pandemic has taken an immeasurable toll on the American people. Over one million people have lost their lives, and countless more will suffer long-term health impacts as a result of the disease.

There is an undeniable link between COVID-19 infections and ongoing heart complications. A study published in Nature Medicine in February of this year concluded the risk of heart problems 1 year after COVID-19 infection is substantial.

COVID-19 can indirectly attack the heart through lack of oxygen, causing the heart to overwork and contributing to cell death and tissue damage in the heart and other organs. It can also infect the heart's muscle tissue, leading to tissue damage and inflammation, stress cardiomyopathy, and blood clots.

And as a result, COVID-19 has only widened heart health disparities around the country. During the pandemic, Black, Hispanic, and Asian populations in the U.S. experienced a disproportionate rise in deaths caused by heart disease.

This amendment directs the Secretary of HHS to enter into an agreement with the National Academies of Science, Engineering, and Medicine, or another appropriate entity, to conduct a study on the relationship between COVID-19 and rates of morbidity and mortality as a result of heart disease in at-risk communities.

We must take steps now to understand the scope of the relationship between COVID-19 and heart disease in our most vulnerable populations.

Madam Speaker, I reserve the balance of my time.

Madam Speaker, I yield to the gentlewoman from Washington (Ms. Jayapal), the sponsor of the bill.

Madam Speaker, I would urge support for the amendment, as well as the underlying bill, and I yield back the balance of my time.

Madam Speaker, I thank Chairman Pallone for all the work he has done. I know he has a big API community in his district, so we appreciate his attention to these issues.

I am very proud to rise in support of my bipartisan bill, the South Asian Heart Health Awareness and Research Act, and I thank my colleague from the other side of the aisle, Representative Joe Wilson, as well as several other Republicans who have cosponsored this bill and for leading on this issue with me.

Every 38 seconds, a person in the United States dies from cardiovascular disease. It is the leading cause of death, regardless of gender, for most racial and ethnic groups in America. But within those groups, South Asian Americans have the highest death rate from heart disease nationwide.

Now, one of the things I love about Congress is that when we have representation of various diverse communities, we are able to bring up issues that our constituents raise to us or that we feel very viscerally. I first introduced this bill in 2017 after the mother of Ven Neralla, my then-legislative director and who is still a staff member here in Congress, tragically died suddenly of heart disease. As we started researching the issue what we learned is that South Asian Americans are four times more likely to develop heart disease than the general population.

As the first South Asian-American woman in the House of Representatives, I am aware of the barriers that our communities experience to address this epidemic. Much of our knowledge about the risks within this community is actually thanks to relatively new research and personal experience. We just don't exhibit the typical risk factors for heart disease, which hinders early diagnosis and prevention measures, not only within our own community but within the broader group of people who have heart disease.

So while my bill does focus on the South Asian community, it benefits all Americans, and it is careful in the bill--in working through language with Republicans last year and in this Congress--to make sure that we have that multipronged approach. It is even more important as we continue to grapple with the lasting impacts of COVID-19. The American Heart Association says that heart disease will likely continue to kill more Americans than any other cause as `` . . . the influence of COVID-19 will directly and indirectly impact rates of cardiovascular disease prevalence and deaths for years to come. . . .''

Ven's mom would have turned 80 this year. His family is just one of millions who have lost a loved one because of heart disease. But her death will not be in vain. This bill will help prevent other families from undergoing this same tragedy. By passing this bill, not only will we prevent deaths within the South Asian community, but we will also increase awareness and understanding of cardiovascular disease that

will benefit the health and well-being of every American.

Again, I am grateful to my colleagues on the other side of the aisle who understand the importance of this bill and have really stepped up to help me pass this legislation on the floor today.

Madam Speaker, I urge my colleagues to vote ``yes'' on passing this bill and saving lives.

Madam Speaker, I rise in support of Representatives Sherrill's amendment to study the relationship between COVID-19 and rates of morbidity and mortality due to heart disease.

And while it is true the gentleman is correct, that there is research out there, the reality is also that there needs to be more, and that the studies that are out there right now prove some elements, but not the entire causal relationship.

In a large study of COVID-19 survivors conducted by the VA, researchers found increased frequency of abnormal heart rhythms, heart muscle inflammation, blood clots, strokes, heart attacks, and heart failure in patients who had COVID-19. The cardiac effects of COVID-19, however, are extremely widespread, and not broadly understood.

I am just going to say, I also have personal experience with this. After my husband contracted COVID-19 from me, after I got it when some colleagues on the other side of the aisle did not want to wear masks on January 6 in the safe room, he, unfortunately had a series of heart attacks and had to have a series of heart operations last year.

Every single doctor said to us, we need more research on exactly what the causal relationship is. And this is the reality of where we are today; and I think that this amendment by Representative Sherrill is a very good addition to the bill.