Policy & Public Health

Undiagnosed HCM: Experts Stress Early Detection

At the BEAT 2025: National Cardiovascular Summit and Awards, the panel “India’s Undiagnosed Heart: Hypertrophic Cardiomyopathy Is More Common Than We Think” brought together leading cardiology experts and patient advocates to discuss a critical yet often overlooked issue. Despite being more common than widely recognized, HCM remains underdiagnosed, posing serious risks for young adults, athletes, and the wider population. The panel was moderated by Dr. K Madan Gopal, Advisor & Head- Public Health Administration National Health Systems Resource Centre, Government of India.

Dr. Upendra Kaul, Chairman -Cardiology and Dean -Academics and Research Batra Hospital and Medical Research Center, New Delhi stated, “Further investigation needs to happen at hospitals and medical colleges. In fact, most of the work on cardiomyopathy globally has been concentrated in a few specialized centers, such as the national center in the United States that handles all cardiomyopathy patients from different districts.

I’m not saying we should send all patients abroad, but we should establish three or four dedicated centers in the country for HCM patients. These centers could focus on proper evaluation, research, and surveys, because HCM is an important disease that often goes unrecognized and presents significant challenges.”

Ram Khandelwal, CEO & Founder, Heart Health India Foundation said, “So, let me start by saying I’m not a doctor—I’m a patient advocate. When we work with the ministry, we often talk to doctors, so we speak in their language, but my perspective comes from being a patient. I represent the heart patient community, and I also speak from my own experience.

I want to make a confession: I had a heart attack at 33. In the months before, I experienced tiredness, dizziness, headaches, and other symptoms—but like many of us, I didn’t take them seriously. This is exactly the problem we see with HCM patients. Symptoms like breathlessness, dizziness, fatigue, or fainting are often mistaken for something minor, like acidity or general tiredness, and people don’t get checked.

We need to take these signs seriously. Breathlessness isn’t “just breathlessness.” Fatigue isn’t “just fatigue.” These could be early warnings of cardiomyopathy. Early awareness and early screening are key. Globally, only about 5% of HCM cases are diagnosed in time. If we identify these cases early, we can prevent severe outcomes—sometimes the first symptom in an asymptomatic patient is collapse.

This affects young athletes, students, and many others. The incidence isn’t small; statistically, there could be someone in this room with undiagnosed HCM. That’s why awareness, early testing, and early intervention are so critical.”

Dr. Anil Saxena, Director, Cardiac Pacing & Electrophysiology, Fortis Escorts Heart Institute, said, “Knowing that a doctor may not fully recognize a condition—without even being consciously aware of it—is a very important issue. What we’ve observed is that the main reason such conditions are missed is often because an abnormality is either not detected early or not interpreted correctly.

For instance, some patients only become symptomatic later. Others may experience mild breathlessness, fatigue, or exertional symptoms, which are frequently misattributed to other factors like obesity or unrelated health issues.

Often, patients undergo neurological investigations like MRI or CT scans, but not cardiac-specific assessments such as ejection fraction studies. Since most clinicians focus on major markers like ejection fraction, subtle abnormalities—such as certain forms of hypertrophy or more concentrated cardiac issues—can easily be overlooked.”

Dr. (Prof.) Narendra Nath Khanna, Founder & Chairman- Asia Pacific Vascular Society Sr Consultant- Cardiology & Coordinator of Vascular Services, Indraprastha Apollo Hospitals, New Delhi Advisor - Apollo Group of Hospitals, India said, “Once we identify patients with hypertrophic cardiomyopathy, confirming the diagnosis is key. Echocardiography often changes the diagnosis, especially if there’s a family history of sudden cardiac death.

Next, we need to check whether it’s obstructive or non-obstructive. If unclear, obstruction can be induced through simple maneuvers like squatting-to-standing, the Valsalva maneuver, or exercise testing—but only by trained operators in a properly equipped facility.

Management requires a multidisciplinary approach. MRI helps assess the myocardium, while a geneticist can identify abnormalities, counsel families, and screen relatives—even those without symptoms. Follow-up over time is critical.

Arrhythmias, like atrial fibrillation, are common, so an electrophysiologist should be involved to prevent sudden death, strokes, and provide timely treatment.

Overall, hypertrophic cardiomyopathy requires coordinated care—from diagnosis to family screening, treatment, and long-term monitoring.”

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