Why I Advocate for Heart Disease Preventive Strategies

At age 21, Khalil D. Adams enjoyed talking with customers at the restaurant where he worked, and many would request his service when they arrived. One day while working, he struggled to breathe, even after using an inhaler. His life was forever changed in 2017 when he arrived at the emergency room.

Doctors ran tests to identify why he was struggling. On April 1, they suspected that Khalil was experiencing the onset of heart failure. In the back of our minds, we wondered: Is this a sick joke on the famous day known for pranks?

The solution was to discharge him with a Life Vest, a wearable external defibrillator that would monitor his heart and provide additional support. Within days, the device was about to shock his heart due to arrhythmia. Khalil had just enough consciousness to stop the device while he noticed his hands turning blue. Days later, Khalil received an internal defibrillator that could better track his heart. On May 1, he suffered a large stroke in his brain’s cerebellum.

It became even more important to identify why a “healthy” 21-year-old and former high school competitive swimmer was experiencing heart failure. The health care team recommended cardiovascular clinical screening and Khalil met with a genetic counselor. We soon learned that he had a gene mutation that causes the heart muscle to weaken and/or leads to an enlarged heart. Khalil’s heart was three times the size of a normal heart.

For more than five years, Khalil lived with the assistance of a left ventricular assist device (an LVAD or heart pump). He received a heart transplant on December 21, 2022.

Khalil is my 28-year-old son. His experience inspired me to learn more about why young people are dying unexpectedly and what prevention and intervention decisions people can make to save their lives. Our family discovered the value of cardiovascular clinical and genetic screening. Screening not only helped explain previous family members’ sudden deaths decades prior, but a few family members living today found that they also are carriers of the mutated gene. This knowledge helped us make informed decisions about prevention or intervention methods. In November 2021, I decided to receive an implantable cardioverter defibrillator as a preventive strategy, because I have the mutated gene that can cause sudden death.

Here is information I’ve learned and am now using, as part of the HealthConnect Fellowship, to advocate and build awareness among community members and health care providers about heart disease preventive strategies.

1. Heart disease is an issue we need to pay attention to.

Heart disease is a leading cause of death based on data from the Centers for Disease Control & Prevention (CDC) and the American Heart Association (AHA), and often, heart disease runs in families. According to the National Society of Genetic Counselors, inherited cardiovascular diseases are a leading cause of sudden death in young people.

How many times have you seen headlines: “Athlete suddenly collapses running for a touchdown,” or, “Up to 80% of athletes  who die suddenly had no symptoms or family history of heart disease?” These consistent headlines should lead us to consider: What additional prevention or intervention tools are available to guide families with children to address the concerning data.

2. Racial disparities reflect inequitable care.

African Americans are twice as likely to die of heart disease as White Americans. Yet, a recent study shows that African American/Black heart failure patients are less likely to get advance therapies than White patients. The study reveals that Whites are twice as likely to receive a heart transplant or ventricular assist device, which is used for patients with severe heart failure. Racial disparities are an indication of why African American/Black patients have worse heart health outcomes. When equitable access to quality health care is offered to all, health outcomes will improve.

3. Gene mutation is one cause of heart disease.

Being aware helps us make decisions that affect health outcomes within our communities. A transformative study identified that a substantial proportion of people with West African ancestry are predisposed to a genetic mutation that can lead to a higher risk of hereditary heart disease. An Iowa Cardiovascular Genetic Counselor shared that 4% of people in the United States with West African ancestry are at an increased risk of heart failure. The condition takes about three years to be diagnosed; as a result, health care providers may underdiagnose or may not make a timely diagnosis.

4. Genetic testing can lead to interventions sooner.

I believe cardiovascular clinical and genetic screening is a part of a healthy lifestyle. It helped save and prolong Khalil’s life, so he would not be one of the sudden death headlines, and it’s helped me make an informed decision to put in an internal defibrillator.

Today, there are not clear guidelines for how to use genetic information in preventive health, and most health care professionals are not yet equipped to bring genetic testing into routine practice. With increased awareness about the opportunity for genetic testing, cardiovascular clinical and genetic screening can develop to the same level of awareness as other genetic and clinical screenings, such as preventive measures for breast cancer.

Be a champion

I am asking you to be a Heart Health Champion and bring awareness to cardiovascular clinical and genetic screening. Everyone has a heart, and I encourage you to take care of yours.