Lessons from the Worst Years of AIDS

An ACT UP activist being arrested during an AIDS demonstration outside the headquarters of the American Medical Association, Chicago, April 1990
Genyphyr Novak/Alamy
An ACT UP activist being arrested during an AIDS demonstration outside the headquarters of the American Medical Association, Chicago, April 1990

In the summer of 1982, as a young oncologist at the University of California at Los Angeles, I developed a hacking cough, fever, and loss of appetite. After a few weeks the symptoms did not abate, and I contacted my internist, who ordered a chest X-ray and blood tests. The X-ray showed a patchy pneumonia, and the blood tests an inflamed liver. I underwent more extensive testing, but no diagnosis could be made. I feared that I had AIDS.

The disorder had been reported to the CDC a year earlier by a UCLA colleague, Dr. Michael Gottlieb. He described five previously healthy homosexual men who had contracted pneumocystis pneumonia. (The pneumocystis carinii microbe was known to afflict severely malnourished children and immune-compromised patients, such as those recovering from organ transplants.) Not long after Gottlieb’s communication, a dermatologist at New York University named Alvin Friedman-Kien reported to the CDC an “outbreak” among gay men in New York City and California of Kaposi’s sarcoma, a skin tumor that had been observed endemically in Central Africa and sporadically among elderly Ashkenazi Jewish and Mediterranean males. Clinicians began to diagnose more and more gay men with aggressive lymphoma—scores, then hundreds of once healthy, mostly young patients with cancers or infections and severely impaired immune defenses.

Because I specialized in oncology and had conducted research on viruses targeting immune cells, I began to care for AIDS patients. No one knew then what caused these patients’ immune deficiency. Although the disorder appeared to be transmitted sexually, the routes of contagion were not fully defined. I did not believe myself to be at risk other than in my role as a physician at the bedside, but there I had ample exposure to patients who coughed, sweated, and even bled; early on, we took scant precautions. I was terrified that I would be the first doctor to contract AIDS in the course of routine care.

My terror was based on what I had seen the disorder do to these young men. With impaired immune defenses, virtually every organ system in the body was attacked and devastated by opportunistic microbes. Patients suffocated from pneumocystis pneumonia. They experienced explosive seizures from fungal infections of the brain, uncontrollable diarrhea from parasitic infections of the bowels, and unrelenting fevers from tuberculosis-like organisms typically carried by birds. Those with Kaposi’s sarcoma developed bulbous red-and-purple tumors that distorted their faces, choked their throats, and swelled their limbs. Lymphoma often grew throughout the central nervous system, causing paralysis. AIDS was a horror.

After several weeks of further testing, a diagnosis was finally made: I had contracted a microbe called…

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