30 Years of AIDS, And How It Began. (Part 1)

This Sunday — June 5, 2011 — marks what public health considers the 30th anniversary of the international epidemic of HIV-AIDS.

If you’d like a summation of the past 30 years, Larry Altman, the retired senior medical writer of the New York Times, did an excellent job last Tuesday. And the Centers for Disease Control and Prevention summed up, in a paper released at noon ET, the state of the epidemic today.

I was not yet a reporter when the plague began, so my memories of that time are not professional memories, but personal. I was a student, studying mostly theatre, and almost all my friends were gay. And suddenly my friends were dying. People who remember will know what I mean. We got used to seeing people we worked and drank with looking, abruptly, like famine victims. We grew battlefield-numb bringing meals, and attending memorials, and calling people’s mothers on their death anniversaries. We knew when the multi-drug cocktails that changed the course of the epidemic had arrived, not because we read the journal articles, but because suddenly we could take our florists off our speed-dial.

I worry, in the complacency that has settled now around HIV as an almost-chronic illness, that the stunning initial impact of this disease that changed the planet has been somehow forgotten. So for my next three posts, I’m going to take you back to those days.

A few years ago, I wrote a book chronicling the history of the Epidemic Intelligence Service, the young disease-detective corps of the CDC. EIS officers, as they’re called, were in on every major disease event of the last half of the 20th century: the end of smallpox, the beginning of the end of polio. And though his name was never well-known and has been almost forgotten, one of them alerted the world to the first known cases of AIDS.

His name was Wayne X. Shandera, and the anniversary that we’ll mark on Sunday is actually the 30th anniversary of the publication of his urgent bulletin, the first in any medical journal to describe a case of HIV.

Below is Chapter 6 of Beating Back the Devil. We begin in California, in the winter of 1980, where Wayne Shandera is contemplating his options for his 2-year stint in the EIS.

AIDS: 1981, Los Angeles (Part One)

Los Angeles was just about the last place Wayne X. Shandera wanted to end up.

The wiry-haired physician had gone to college at Rice University in Houston, crossed the country to medical school at Johns Hopkins University in Baltimore, and then crossed back for residency at Stanford University outside San Francisco. Now he was wondering whether to pack up again. He had been admitted to the Epidemic Intelligence Service, and the group had asked him to list his preferences for an assignment.

Shandera was 29 years old, a devout Catholic who read three languages and was an accomplished organist. He loved living in the Bay Area; he liked the climate and the architecture, and he felt at home in the left-leaning discourse that simmered in its bookstores and coffee shops. Shandera had moved to San Francisco in 1977, the year that activist Harvey Milk was elected to the city’s board of supervisors. Milk was the first openly gay man to win a popular election anywhere in America. When he was murdered a year later, gay men poured into the city, transforming its colorful, casual decadence into a nexus of sexual flamboyance and political fury. But Shandera had little contact with gay San Francisco. Heterosexual, socially conservative and somewhat shy, he would rather have gone to a chamber music concert than a Pride parade.

At the moment, he was unsure where to go. Conventional CDC wisdom held that headquarters offered the best EIS assignments. Atlanta made personal sense as well. Shandera’s father was ill with colon cancer in San Antonio, and he had left the promising beginnings of a relationship behind in Baltimore three years before. In Atlanta, he thought, he would have easy airplane access in both directions.

On the other hand, he had just finished three years of caring for patients. He had not had a course in statistics or epidemiology since his second year of medical school, and he was weak in the necessary skills of sleuthing out the details of outbreaks and writing coherent narratives about them. He might, he thought, get more practice in a city or state health department. EIS matching lets candidates list up to 10 choices. Shandera studied the list of possible postings and put the Louisiana health department first, followed by eight jobs in Atlanta, and the Los Angeles County health department dead last. It was a low probability, he thought; the matchers never worked their way that far down a candidate’s list.

In June 1980, the notice arrived: After training in Atlanta, Shandera was to pack up his Stanford apartment and move south to Los Angeles.

He was horrified. His colleagues were dismissive.

“You’re not going to find anything to work on there,” his cardiology professor said. “Except for a bunch of sexually transmitted diseases.”

He had no idea how prophetic a statement that was.

–  –  –

It looked, at first, as though Shandera’s derisive professor had been wrong. There were plenty of diseases in Los Angeles. There was a cluster of miscarriages in Long Beach; two outbreaks of diarrhea, one in a day care center and one spread throughout the city; a set of hepatitis cases among women who donated blood plasma; and a puzzling outbreak of epidemic neuromyasthenia, a syndrome of headache, fever and muscle weakness, among patients of a neurologist in Pacific Palisades.

He did not solve all of the outbreaks, though they kept him busy. He worked hard, but he was unhappy. Nothing he was doing seemed novel, and he had been attracted to the EIS by the hope that he could help identify new health problems.

Twice in the past five years, the group’s members had helped identify previously unrecognized diseases. In the summer of 1976, they had scrambled to an epidemic of pneumonia that sickened 221 people and killed 34 at an American Legion convention in a hotel in Philadelphia; by the end of the year, CDC scientists had identified the pathogen causing it, dubbed it Legionnaires’ disease, and exposed it as the cause of two other, never-solved outbreaks in 1965 and 1968. Two months before Shandera joined the EIS, in May 1980, the CDC had linked 55 severe cases of fever, rash and Group A Streptococcus infection, a constellation of symptoms dubbed toxic shock syndrome, to women’s use of high-absorbency tampons. Nothing that he was seeing in Los Angeles promised the excitement of those discoveries.

He worried, too, that he wasn’t learning enough epidemiology. He missed the intense supervision of residency. He had chosen public health, to start with, out of a sense that he wanted to make more of a difference than he would working one-on-one with patients in a hospital. In Los Angeles, he couldn’t see any evidence that he was making much of a difference at all.

The clincher was that he loathed the place. In San Francisco, he had biked everywhere; now he owned an old Mustang and was immersed every day in the city’s desperate traffic. The air quality was very bad that year — “Some days we couldn’t see across the street,” said Frank Sorvillo, an epidemiologist who shared a cubicle with him — and the frank materialism of the city grated on Shandera’s sensibilities.

“In one day, I would see 20 migrant workers living in a garage in East L.A., and then have to drive through Bel Air and be staggered by the contrasts,” he said. “It was disturbing, and hard to work in. I was at odds with the city most of the time.”

In the spring, Shandera asked the corps to transfer him. They offered him a job in Atlanta, starting in a few months: late July 1981. He accepted.

–  –  –

There was something percolating through Southern California that spring.

Some of the health department’s epidemiologists heard reports from doctors they knew, that patients in practices in the San Fernando Valley were complaining of swollen lymph nodes and stubborn low-grade fevers. There was no obvious diagnosis. Those symptoms could signal the start of lymphoma, a cancer of the immune system that attacks a particular type of white blood cell, but tests were finding no trace of cancer.

Most of the patients, the doctors said, were men.

At about the same time, a pathologist at the University of Southern California called Shandera’s cubicle-mate Frank Sorvillo. He had evidence of cancers in a cluster of six male patients. But there was something odd about what he was seeing through the microscope; the pathology of these lymphomas was like nothing he knew.

One of the patients was still in the hospital, and Shandera and Sorvillo went to interview him. The man was a drug addict, but there was nothing else extraordinary about him, nothing that would predispose him to an unusual lymphatic cancer. They let the case go.

At University of California-Los Angeles, anomalous cases were showing up as well. They were finding their way to Dr. Michael S. Gottlieb, an assistant professor of immunology who had joined the medical school staff in the summer of 1980. Like Shandera, Gottlieb had come from Stanford and they had known each other there slightly. Gottlieb was four years older, and had been a research fellow when Shandera rotated through immunology as a resident; he had gone over cases and journal articles with the younger doctor.

Gottlieb’s specialty was the immunology of organ transplantation. At Stanford, he had looked for ways to persuade the body to accept transplants without using drugs to suppress the immune system, the only way known to keep organs from being rejected as foreign. Unlike Shandera, Gottlieb liked Los Angeles. While at Stanford, he spent some time at UCLA studying bone-marrow transplants, and the university invited him to move south and open an immunologic research lab.

Gottlieb was one of the attending physicians — senior doctors who supervise the training of younger ones — on the immunology service of the UCLA School of Medicine. On a slow day in March 1981, he asked Dr. Howard Schanker, a fellow, to patrol the hospital for patients whose cases might present teaching opportunities.

Gottlieb’s office was in the hospital basement. Schanker left for the upper floors. Very shortly afterward, he came back.

“He had a quizzical look on his face,” Gottlieb said. “He said, ‘There is a guy upstairs whose infections are really kind of strange.'”

Next: The first five cases, and the first attempt at an alert.



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