Hypertrophic cardiomyopathy (HC) is a relatively common genetic heart disease responsible for mortality and morbidity at all ages. Using contemporary treatment advances, such as implantable defibrillators, surgical myectomy, heart transplant, and modern defibrillation for out-of-hospital cardiac arrest, it is now possible to reduce HC-related mortality considerably to 0.5% per year, less than expected in the general US adult population. However, in much of the developing world, HC has not yet become a priority given the many other cardiac conditions, such as coronary artery disease and systemic hypertension, so prevalent in the most populous countries such as China and India. Management of HC is best achieved in dedicated centers within institutions, such as previously demonstrated in the United States, Canada, some European countries, and Australia. This model has recently been introduced for the first time in India at the Amrita Institute of Medical Sciences and Research in Kochi, Kerala, in which a robust program focused on HC has emerged. This novel initiative, created despite the many obstacles in the Indian health care system, is an important step forward and is reported here detail.
Hypertrophic cardiomyopathy (HC) is a common form of inherited heart disease with a prevalence of at least 1:500. This disease has been of considerable interest to cardiologists for the past 50 years but often overwhelmed in cardiovascular practice by the vast number of patients with coronary artery disease and systemic hypertension. This has been particularly true in underdeveloped countries such as India and China with vast populations (>1 billion), and compounded by limited resources without widely available health insurance to cover the costs potentially incurred by patients.
The concept of centers or programs within divisions of cardiology dedicated to the diagnosis and management of less common diseases such as HC has been promoted as an advantageous strategy to provide patients with the best opportunity for appropriate diagnosis and treatment, extended longevity, and better quality of life. In such centers of excellence, patients with HC have the benefit of advanced imaging for diagnosis, genetic/family counseling, and all major management options, including implantable cardioverter-defibrillators for sudden death prevention and surgical myectomy (and alcohol septal ablation) for reversal of progressive heart failure because of left ventricular outflow obstruction and heart transplant for end-stage nonobstructive disease. In such centers, HC-related mortality in adult patients has been reduced to 0.5% per year. Creating such a program in a populous country such as India is a major challenge. This is particularly true when considering that only a fraction of citizens are eligible for, or have the means to obtain medical/health insurance; for example, 5% of the overall population of India compared with 87% in the United States. A novel example of one such initiative is emerging in southern India, evolving against numerous pre-existing obstacles within the Indian health care system. That program is at the Amrita Institute of Medical Sciences and Research in Kochi, Kerala, with Dr. Hisham Ahamed as Project Leader of the HC Center and Dr. K. U. Natarajan as the Chief of Cardiology ( Figure 1 ).
Justification for the HC Center
Based on considerable research for the past 10 to 15 years, primarily from US investigators and European/Australian collaborators, HC is now regarded as a treatable form of heart disease with the possibility of achieving normal longevity. With the aspiration of establishing a similar level of care for Indian patients, cardiologists at Amrita have taken the initiative for the past 18 months to create an HC center model to benefit such patients in ways not previously available in India by following the strategies used by formalized programs in the United States: (1) designate 1 predominant cardiologist, well versed in the HC disease spectrum, to fulfill the requirements of Director/Project Leader, responsible for primary diagnosis and management decisions for all patients enrolled in the center, in collaboration with other cardiologists; (2) recruiting a cardiac surgeon having specific experience with the septal myectomy operation; (3) formulate an expert electrophysiology service, including paramedical staff for device follow-up, with a focus on primary prevention with implantable defibrillators, according to the US guidelines for HC ; (4) designate an experienced interventional cardiologist to perform alcohol ablation as a selective alternative to surgical septal myectomy; (5) train personnel for advanced imaging with cardiovascular magnetic resonance and echocardiography and designated readers for interpreting HC images; (6) develop access to outside fee-for-service genetic testing; (7) in-hospital/clinic electronic retrieval of medical records; (8) systematic computer entry of data related to all HC visits in an independent spreadsheet for the purpose of clinical research; and (9) access to a heart transplant service, recognizing the growing importance of advanced heart failure in nonobstructive HC.
In addition, Kochi has a well-developed and robust Pediatric Cardiology Section with 6 cardiologists and 3 surgeons, reflecting the importance attributed to the many children and adolescents identified with HC. At this time, the new center in Kochi has already enrolled 225 patients in 18 months, and the future expectation for patient volume is very high, given that the population of the state of Kerala is itself almost 35 million. This initiative in HC reflects a growing interest in such programs, as evidenced by another planned center in New Delhi at Kalra Hospital.
Strategies for Financial Support
The HC dilemma in India is related in large measure to the national medical insurance crisis in which only ∼5% of the population have reasonably comprehensive governmental or employer-sponsored coverage. Therefore, for ≥95% of patients, the cost of care rests almost entirely with the patient’s personal monetary resources, including either the truly wealthy upper class who do not require health insurance, average families required to assemble payment from life savings and the assistance of relatives (including some who may reject insurance on a cultural basis), and a small minority capable of raising funds from charities.
Indeed, there are numerous obstacles to universal health insurance in India, not the least of which is that 70% of the population is rural and only a minority of the country has access to allopathic (Western) medicine and modern medical treatments. In addition, some physicians are trained in homeopathy and ayurveda alternate medicine, but attempt to practice allopathic medicine with limited knowledge. The private health care sector is reportedly fraught with kickbacks, excessive commercial transactions directly between patients and doctors, malpractice, and false reporting. The private health insurance market is underdeveloped, and growth has been challenging and slow in expanding health care coverage.
The most reliable cost estimates for evaluation and treatment in India (converted to US dollars) applicable to HC are as follows:
12-lead electrocardiogram = $2,
Echocardiogram = $15,
Cardiovascular magnetic resonance imaging = $160,
Stress echocardiogram = $50,
Cardiac consultation = $5,
Implantable defibrillator = $10,000,
24-Hour (Holter) electrocardiogram = $20,
Heart transplant = $15,000,
Myectomy = $2,000,
Genetic testing = $350, and
Beta-blocker = $5/month.
Although these personal out-of-pocket charges for an HC evaluation are exceedingly modest on the US scale (which would be 10- to 100-fold greater), these costs would nevertheless leave thousands of Indian patients without any of the essential diagnostic and treatment options. In contrast, it is also important to point out that with at least 1 million identifiable patients with HC in India and an estimated 10% with comprehensive insurance (or sufficient and readily available personal resources), there could still be at least 100,000 Indian patients with HC for whom contemporary treatments would be available even under the current limitations of the health care system.