Hypertrophic cardiomyopathy (HCM) is a genetic heart condition that causes the heart muscle to thicken, making it harder for the heart to pump blood. It affects people of all racial and ethnic backgrounds, but when it comes to Black individuals, the disease can present differently and outcomes may be impacted by health disparities.
Understanding these differences is essential for improving care, raising awareness, and supporting earlier diagnoses in Black communities.
What Is HCM? A Quick Overview
HCM is typically caused by abnormal genes in the heart muscle. These mutations cause the walls of the heart, most commonly the left ventricle, to thicken, which can:
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Obstruct blood flow
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Lead to abnormal heart rhythms (arrhythmias)
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Increase the risk of heart failure or sudden cardiac death (SCD)
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HCM in Black Americans: How It’s Different
1. Clinical Presentation
Black patients are more likely to present with symptoms of advanced heart failure, such as:
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Shortness of breath
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Fatigue
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Swelling in the legs and ankles
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Reduced ability to exercise
They may also be more likely to have apical hypertrophy, a form of HCM where the thickening is concentrated at the tip of the heart, which can be harder to detect on routine tests.
2. Earlier Diagnosis
Many Black individuals with HCM are diagnosed at a younger age, sometimes during adolescence or early adulthood. However, because the disease is often underrecognized in this population, many cases are only diagnosed after complications occur.
3. Sudden Cardiac Death (SCD)
There’s growing evidence that young Black athletes may be at higher risk for sudden cardiac death related to HCM. This makes early screening and diagnosis critical, especially for those involved in high-intensity sports.
Tip: If you or a family member has experienced fainting, chest pain with activity, or a family history of sudden death, ask your doctor about heart screening—even if you’re young and active.
Genetic and Biological Differences
While HCM is largely a genetic disease, Black individuals with HCM are:
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Less likely to have sarcomere mutations, which are the most common genetic changes linked to HCM in white patients.
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More likely to have unknown or less-understood genetic variants, which may affect how the disease develops and progresses.
This means that genetic testing, while still important, may be less conclusive in some Black patients, underscoring the need for ongoing research tailored to this population.
Challenges in Diagnosis and Treatment
Underdiagnosis
HCM is believed to be underdiagnosed in Black communities, potentially due to:
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Less access to specialty care
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Lower referral rates for cardiac imaging and genetic testing
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Misattribution of symptoms to other conditions, like asthma or hypertension
Lower Access to Interventions
Black patients are less likely to receive:
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Surgical septal myectomy (an operation to remove thickened heart muscle)
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Implantable cardioverter-defibrillators (ICDs) (which prevent sudden death from arrhythmias)
These disparities can lead to worse health outcomes, even when symptoms are similar.
The Role of Social Determinants of Health
Health doesn’t exist in a vacuum. Many Black individuals face systemic barriers that affect their ability to manage chronic conditions like HCM:
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Limited access to cardiology specialists
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Financial constraints or lack of insurance
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Transportation challenges
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Cultural mistrust of the healthcare system
These social and structural issues can delay diagnosis, limit treatment options, and contribute to more severe disease.
Tip: If you’re managing HCM, work with your care team to address barriers early. Ask about financial support, transportation options, and whether telehealth visits are available.
What Needs to Change?
1. Greater Awareness and Screening
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Primary care doctors, coaches, and community leaders should be educated about HCM in African Americans.
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Screening programs for athletes and family members can help catch the disease earlier.
2. More Inclusive Research
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More studies are needed to understand how HCM behaves in different racial and ethnic groups.
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Genetic databases must include more diversity to improve the accuracy of testing for all populations.
3. Equity in Access to Care
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Black patients must have equal access to HCM centers, advanced therapies, and genetic counseling.
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Cultural sensitivity in care delivery can improve trust and outcomes.
Living Well with HCM: Practical Steps
Here are actionable tips if you’re a Black individual living with HCM—or supporting someone who is:
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Know your family history: Share any incidents of sudden death or heart failure with your doctor.
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Get a second opinion: If you’re not being offered all treatment options, ask to see a specialist in HCM.
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Push for genetic counseling: Even if tests are less conclusive, family screening and counseling can save lives.
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Join a support group: Connection with others can help you manage the emotional aspects of living with HCM.
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Educate your community: Sharing your story helps reduce stigma and raise awareness in underserved areas.
Final Word
Hypertrophic cardiomyopathy is a manageable condition—but only if it’s diagnosed and treated in time. For Black communities, raising awareness, improving access, and demanding equitable care are essential steps toward better outcomes.
Your health is your power. Know the signs. Ask questions. Get screened. And if you have HCM, know that you’re not alone—there’s a growing network of doctors, researchers, and advocates committed to improving the care and lives of Black patients with HCM.
