Disheartening Disparities

Three years ago, my father woke up in the middle of the night in our home in Harare, Zimbabwe, with chest pain and palpitations. When that happened once before, we’d waited 3 hours for an ambulance, so my father convinced my mother that ambulances were too unreliable. They decided to wait until 7 a.m., when our primary care doctor, who was also an old friend, opened his office. When it was time to go, my mother helped my father change out of his pajamas and climb slowly into the car. She could tell he was in pain, and she drove quickly but gently over the potholed Zimbabwean roads so that he could be the first patient seen by the doctor that Saturday morning.

Our family doctor, who’d been treating my father’s heart disease for more than 20 years, took one look at a single-strip EKG and knew that the situation was serious. He called the insurance company to authorize an emergency evacuation to South Africa. But the insurance agent refused to approve the evacuation without the expert opinion of a cardiologist. It was 7 a.m. on a Saturday, and the handful of cardiologists in Zimbabwe were asleep.

While the doctor argued over the phone with the insurance company, my father, a stoic ex-soldier in his 50s, whispered to my mother, “I think I’m going.” She could see the terror in his eyes before they rolled back and he collapsed into the waiting-room armchair. My mother shrieked, and the doctor ran in, put my father on the floor, and began chest compressions to try to revive his lifeless body. The insurance agent called back 30 minutes later to approve the evacuation — but my father was already gone. My mother sobbed, as sniffling patients watched her nightmare unfold.

A year after we lost my father to hypertrophic cardiomyopathy, I began medical school in New York. Aware of the disease’s genetic basis, I underwent the screening echocardiogram that I’d been putting off for the previous year. An ocean away from home, I had an experience with cardiac care that could not have been more different from my father’s.

The technician, expecting nothing out of the ordinary as she slid the probe over my chest, paused suddenly and then called the attending for help. The doctor, himself confused, spent several more minutes looking at images of my heart before he called a more experienced colleague. I listened intently as the senior doctor explained to his colleague the anomalies visible on the screen, diagnosing me with a variant of the disease that had killed my father.

In the freezing room, gooseflesh overtook my body as I felt my world turn upside down. As a physician-in-training, I never imagined I’d become a teaching case myself. I began writing an exam vignette in my head, “A 25-year-old, previously healthy medical student has an echocardiogram after his father dies suddenly . . . .”

I reacted the only way I knew how. I worked extra hard in class to understand cardiac pathophysiology (it didn’t come naturally). I spent hours in the library scrolling through academic articles and abusing my printing privileges to learn more about my genetic curse. I became the most informed health care consumer possible.

When I Skyped with my mother to tell her the news, we got cut off because she’d had no electricity at home for 3 days and the generator had finally run out of gas. I realized I took for granted my school’s fast Wi-Fi and library databases that gave me access to more information about hypertrophic cardiomyopathy than our family doctor had had during the 20 years he treated my father. When I was in college, my father would ask me to bring home books about heart disease so he could learn more about his condition. He barely knew how to send text messages, let alone search the academic literature. I’d never thought twice about the technology and skills my U.S. higher education afforded me for intellectualizing my distress.

A week after my diagnosis, I met with the senior cardiologist. He’d sent my scans to an international expert at the Mayo Clinic. Together, they decided that I should have an automatic implantable cardioverter–defibrillator (ICD) placed as soon as possible. It would save my life if I had a potentially fatal arrhythmia. The cardiologist referred me to an electrophysiologist on the same floor for an appointment that same day. My father had struggled, in his last hours, to find a heart specialist anywhere in Zimbabwe. In a single hour, I’d received elite care from four cardiologists — more than the number serving Zimbabwe’s entire population of 14 million.

Cardiovascular disorders are the most common cause of death worldwide. More than 80% of deaths due to cardiovascular disease occur in developing countries like Zimbabwe.1 Traditional global health efforts, with agendas determined primarily by funding streams, have focused on infectious diseases such as HIV–AIDS, malaria, and tuberculosis because such investments can produce more immediate and measurable results than targeting of chronic diseases could achieve. Only in 2008, when the World Health Organization launched an action plan for addressing noncommunicable diseases, did funders and global institutions start to take note of noninfectious causes of poor health in developing countries.2

Such neglect filters down to primary care, where providers place little emphasis on preventive medicine or patient education. My father had had a previous heart attack, was overweight, and continued to smoke and drink heavily. He routinely visited our primary care doctor, but once his checkup was over, the two of them would step outside and share cigarettes as they caught up on each other’s lives. Health care systems in Zimbabwe and other developing countries still lack a culture of prevention. Most people served by the public health care sector do not routinely receive primary care services, and when they do, their care is rudimentary at best. Screening guidelines for most cancers, for example, are impractical and rarely followed in sub-Saharan Africa. By contrast, my U.S. doctors urged me to have an echocardiogram and then prescribed interventions to protect my health and my heart. They instructed me to reduce my caffeine and alcohol consumption, stop lifting weights, and have an ICD implanted as soon as possible.

Had my father received preauthorization, he would have had to survive a 3-hour helicopter flight to a South African hospital where his health insurance would not have covered the full cost of his care. When my surgery date arrived, I walked across the street from my dorm to the hospital. The defibrillator was so new that there were not yet randomized, controlled trials for it, so I consented to participate in a multicenter trial studying outcomes with this latest device. Even the surgery was brand new — my defibrillator was placed under the skin over my rib cage, rather than under my pectoral muscle, where most devices are inserted. This technique was being tested for young patients who wanted an active lifestyle. Once the cardiologists finished, a plastic surgeon closed the incision for the best aesthetic results — recognizing that I might still want to impress people with my shirt off. The hospital team discharged me with antibiotics and painkillers, follow-up appointments, and pamphlets about my new ICD.

I was back at medical school in a week, but each time I walked into the modern hospital, I thought of my father. I was lucky. Most young people who die of hypertrophic cardiomyopathy are diagnosed at autopsy, after they collapse during a marathon or a high school football game. I wondered whether my father would have lived longer with my lucky combination of education, resources, and geography.

My family still lives in Zimbabwe, where there are no ICDs or heart surgeons or, in some places, ambulances. I often imagine a far more likely trajectory in which I’m not in medical school in the United States, I don’t have four attentive cardiologists, I don’t even have steady electricity or access to reliable public health information. That is the reality for the 28,000 people who die of heart disease every year in Zimbabwe.3 The $40,000 subcutaneous ICD that rubs against my rib cage is a constant reminder of these inequalities — and my responsibility to become the kind of doctor who will work to reduce them.