This past year brought uncertainty and change for every American as families and communities grappled with the COVID-19 pandemic. Unfortunately, many experienced tragedy and loss. For me and my family, our world forever changed on June 16, 2020, when I tragically lost my beloved wife Carol to sudden cardiac arrest. She was only 39 years old. Carol’s greatest legacy is our two beautiful daughters, Eleanor (age 9) and Mary Clay (age 7). She was the best wife, mother, daughter, sister, and friend anyone could ever have.
The medical examiner and Carol’s doctors told us that her fatal heart attack was likely brought on by a ventricular arrhythmia. At a young age, Carol had been diagnosed with an underlying condition called mitral valve prolapse (MVP), or floppy valve syndrome—a typically benign condition that results in sudden cardiac death in only .2% of cases.
As we recognize American Heart Month and as people across the nation work to raise awareness for heart disease this February, I am honoring my wife’s legacy by fighting back against the disease that took her life. On February 22, Heart Valve Disease Awareness Day, I introduced the Cardiovascular Advances in Research and Opportunities Legacy (CAROL) Act.
The CAROL Act addresses the gaps in understanding about what risk factors make valvular heart disease a potentially life-threatening condition. Specifically, the bill authorizes a grant program, administered by the National Heart, Lung, and Blood Institute (NHLBI), to support research on valvular heart disease, including MVP. Many Americans who suffer from MVP or other valvular heart diseases do not know they are at serious risk.
Investments in modern day medicine and research can change that. Our bill will encourage the utilization of technological imaging and precision medicine to generate data on individuals with valvular heart disease. Critically, this research will help identify Americans at high risk of sudden cardiac death from the disease and develop prediction models for high-risk patients, enabling interventions and treatment plans to keep these patients healthy throughout their lives.
Additionally, the legislation will convene a working group of subject matter experts to identify research needs and opportunities to develop prescriptive guidelines for treatment of patients with MVP. It will also instruct the Centers for Disease Control and Prevention (CDC) to increase public awareness regarding symptoms of valvular heart disease and effective strategies for preventing sudden cardiac death.
We must take on valvular heart disease directly to save lives at risk of being taken too soon. Underdiagnosis and undertreatment of heart valve disease contribute to over 25,000 deaths each year in the United States. Predictors of sudden cardiac death, however, are poorly understood and indicators of high-risk individuals are hard to pinpoint.
For example, the specific condition that Carol was diagnosed with, MVP, is a common heart valve disease that has an estimated 2.4% prevalence in the general population. Though most cases are thought to be benign, reported complications such as severe mitral regurgitation can result in sudden cardiac death. Medical research has found an association between MVP and sudden cardiac death, which predominantly affects young females with redundant bileaflet prolapse, with cardiac arrest usually occurring as a result of ventricular arrhythmias. Despite several studies, there is still not sufficient data to generate prescriptive guidelines for care of patients with valvular heart disease, including MVP.
Carol Barr dedicated her life to the future of our daughters, serving others, and making a positive difference in her community. So turning this unspeakable tragedy into something that can inform others and save lives is exactly what she would have wanted. The CAROL Act will provide the resources needed and generate the awareness required to reduce the 25,000 deaths related to valvular heart disease every year, saving young women like Carol from leaving us too soon. If you would like to support our legislation, please call or write your Congressman and join our cause. Together, we can help other families avoid the tragedy that has so profoundly impacted mine.
U.S. Congressman Andy Barr (KY-06) is in his fifth term in Congress, representing the Sixth Congressional District of Kentucky. Congressman Barr serves on the House Financial Services and House Foreign Affairs Committees.