Lexington, KY – Today, U.S. Congressman Andy Barr (KY-06) introduced the Cardiovascular Advances in Research and Opportunities Legacy (CAROL) Act.  The CAROL Act honors Congressman Barr’s wife, Carol Leavell Barr, who tragically lost her life last year to sudden cardiac arrest most likely brought on by a ventricular arrythmia.  Carol had 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.  Twenty-five thousand Americans lose their lives to valvular heart disease each year, predominately young women. 

The CAROL Act addresses the gap in understanding about what makes valvular heart disease life threatening by authorizing a grant program administered by the National Heart, Lung, and Blood Institute (NHLBI), supporting research on valvular heart disease.  Many Americans who suffer from MVP or other valvular heart diseases do not know they are at serious risk.  The CAROL Act encourages the use of technological imaging and precision medicine to generate data on individuals with valvular disease.  Critically, this research will help identify Americans at high risk of sudden cardiac death from valvular 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 convene a workshop of subject matter experts to identify research needs and opportunities to develop prescriptive guidelines for treatment of patients with MVP.  It also instructs the Centers for Disease Control to increase public awareness regarding symptoms of valvular heart disease and effective strategies for preventing sudden cardiac death.  The CAROL Act has been endorsed by the American Heart Association, the American College of Cardiology, and WomenHeart.

“Carol’s life was about selfless service to others and making a positive difference in our community.  Carol was the best wife, mother, daughter, sister, and friend anyone could ever have,” said Congressman Barr.  “Through this legislation, we provide the investments, resources and awareness needed to inform others about valvular heart disease and save lives.  Turning this tragedy into something positive is exactly what Carol would have wanted us to do, and I will champion this cause for the rest of my life.”

“This important legislation would increase research on heart valvular disease, its effects and treatment options while increasing public awareness,” said Dr. Hal Skinner, FACC, FASE, FSCAI, President of Lexington Heart Specialists and Central Kentucky AHA Board President.  “With additional research and education, lives will be saved.  We thank Congressman Barr for sharing the American Heart Association’s mission to be a relentless force for a world of longer, healthier lives.”

“The Cardiovascular Advances in Research and Opportunities Legacy Act (CAROL Act) is a vital bill that will establish dedicated funding for life-saving research and critical education around cardiac valve disease,” said Samuel O. Jones IV, MD, MPH, FACC, American College of Cardiology Health Affairs Committee Chair.  “We appreciate Congressman Barr working with the American College of Cardiology and the rest of the cardiovascular disease community to not only shed light on valve disease, but taking tangible action that we believe will transform and improve heart health.  We look forward to ongoing efforts as there is more work to be done.”

“Women with heart valve disease are too often under-diagnosed and under-treated,” said Celina Gorre, CEO of WomenHeart.  “We thank Congressman Barr for his leadership on this issue. WomenHeart supports this legislation, which will help to advance research and raise awareness of heart valve disease, so we can prevent future tragedies and improve health outcomes for women.”