by Tushar Patel MD MPH
(From Tufts University School of Medicine Public Health Rounds – Fall 2006)
Even now, I can still see her. Her face is disfigured, swollen in some parts and normal in others. My cousin’s body glows red from the fluorescent lights shining on her rash. There is a hole in her cheek. She cries, yet smiles in my presence and I smile in return. I remember little of the time I spent with Priti on her farm in India. Yet, her last days are imprinted in my memories. At the age of twelve, Priti died of an allergic reaction to penicillin. Her chicken pox and high fever should have been treated without penicillin.
To this day Priti reminds me that life is a precious gift. Twenty-three years later, recollections of Priti and a research opportunity offered by Dr. Christine Wanke,Professor of Medicine and Public Health and Family Medicine, brought me back to one of India’s hospitals, Y.R. Gaitonde Centre for AIDS Research and Education (YRG CARE). This small non-profit hospital treats ten thousand HIV patients. Providing patient care in their 16 bed hospital showed me the complexities faced by India’s destitute.
Reminiscent of Priti, patients at YRG made me acutely aware that India’s medical advances have yet to overcome the deficient health education, inadequate personnel training, politics, and cultural biases that undermine the health of its underprivileged. I recall Jayshree, a statuesque mother in her late twenties. She suffered from headache, vomiting, and neck stiffness. On observation, she seemed healthy and physically fit except for her tuberculosis (TB). The CT scan showed no abnormalities. The YRG doctors recommended a lumber puncture (LP). But, her husband felt that the LP was too costly and took her home against orders. One week later, Jayshree returned after a stroke had paralyzed the entire right side of her body. She died two days later. Cost likely rationalized her husband’s decision, similar to other patients’ husbands. But, I wonder what Jayshree would have decided had she been given the choice?
I also remember Rajesh, a broad shouldered-six-foot two inch farm worker, brought to the hospital by his mother. His massive, almost healthy, frame heaved as he gasped for air. Rajesh’s family like many others had spent most of their rupees on “miracle medicine,” an herbal remedy believed to cure HIV. Left with little resources they came to YRG. Without antiretroviral and preventative medications TB, Pneumocystis carinii pneumonia, and oral candidiases had infected Rajesh. After a few days, he became unconscious with his chest pumping rapidly. The fluid surrounding his lungs and heart indicated that he required immediate cardiac care. When I asked why he was not moved to an ICU facility equipped with a surgeon, a physician responded, “He has AIDS, they won’t admit him and surgeons will not risk infection.” Rajesh’s mother was told that “little could be done.”
The stigma of HIV impaired the healthcare offered to patients. In some instances, nurses had patients’ wives clean up bodily fluids. Referred physicians would be reluctant to walk into the wards because they feared HIV infection. As in the case of Rajesh, surgeons were unwilling to perform their duties unless paid double or triple the fees, and their collusion only worsened the patients’ burden.
At summer’s end, I stood on Priti’s farm to reflect upon my experiences.The world I envisioned
would empower Jayshree and Rajesh to battle their illnesses instead of leaving them disarmed. The memories of these patients and Priti have taught me that while we await improved infrastructure, treatments, health systems, medical education, patient education, economies, and sound political leadership the millions unable to control their environment will continue to suffer. To me, this is unacceptable.