And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (14 page)

The
MMWR
announcement about KS received a one-day infusion of press attention, garnering the obligatory stories in
The New York Times
and the
Los Angeles Times.
This ensured that all the wires would carry the story into most of the nation’s major newspapers. The writing was crafted so as not to offend and not to panic. The notion that there might be a new infectious agent was downplayed in favor of hypotheses involving some environmental factor, mainly poppers, or some new strain of an old virus, particularly the cytomegalovirus that the
MMWR
discussed in detail. This day in the limelight, however, was the most attention the new epidemic would receive for the next year. After the first week of July, the outbreak faded from newsprint and became an item of interest largely to gay men.

In San Francisco, Bill Kraus attributed the reports of the new diseases to anti-gay bias in the press. Reporters never talked about the constructive things the gay community did, he thought, but let a few people get sick and they’re all over it.

Cleve Jones clipped out the wire story that appeared in the morning
Chronicle
and pinned it to his office bulletin board under his handwritten headline: “Just when things were looking up.”

T
ORONTO

If Gaetan Dugas had an obstacle, he decided on the quickest way to overcome it and confidently set about the task. When he resolved to get out of the hairdressing business and be an airline steward, he studied the requirements carefully and got to work. Air Canada required that flight attendants be bilingual, so Dugas, who had never lived outside the parochial confines of the French-speaking Quebecois, moved to Vancouver without knowing a word of English. Immersed in the new language, he quickly acquired the skill necessary for the job.

When he saw the first story about Kaposi’s sarcoma, he researched the best American centers for treatment and made a beeline for New York University, where Alvin Friedman-Kien and Linda Laubenstein were seeing the most KS patients. He was going to beat this, he told friends. His Canadian doctors hadn’t done anything for him. Within days, he had lined up an appointment at NYU.

Paul Popham was leaving the Trilogy Restaurant in Greenwich Village when he thought he recognized Gaetan Dugas walking down Christopher Street. God, that guy is handsome, Paul thought. He couldn’t blame Jack Nau for picking him up last Halloween. The pair had also spent a few weekends together after that, Paul knew.

“Jack’s at St. Vincent’s Hospital,” Paul said. “I’m sure he’d like to see you.”

Gaetan smiled and chatted but didn’t mention why he was in town.

A few days later, Gaetan cajoled an airline steward friend to go with him to St. Vincent’s to visit an old trick. The friend had come from Toronto to help Gaetan through his first week of chemotherapy. Gaetan, who had already checked into the apartments used for ambulatory NYU patients, was in good spirits on the trip over to St. Vincent’s. Neither of the young men were prepared for how wasted the once-handsome patient would be.

“Maybe next week, I’ll get up,” Jack sighed.

It was obvious to both visitors that Jack wasn’t going anywhere, not next week and probably not ever again.

Gaetan sat in stony silence during the cab ride back to NYU. For the first time, his friend thought, he’s seeing how serious this really is.

Gaetan moved back to Montreal when he finished his chemotherapy. He had taken a leave from Air Canada and decided to adopt a more leisurely life, using airline passes he still held to do the coastal hopping he enjoyed so much. He returned to NYU once a month for more treatments. When his hair began falling out, he simply shaved his head so nobody would notice. His Yul Brynner look was quite attractive. As he traveled between San Francisco, Los Angeles, Vancouver, Toronto, and New York, he realized that if he kept to bathhouses where the lights were turned down low, nobody would ask him about those embarrassing purple spots. He was still the prettiest one.

July 1981

C
ENTERS FOR
D
ISEASE
C
ONTROL,
A
TLANTA

Jim Curran finally got the official word that he would be detailed to the KS and PCP outbreak for three months. The assignment meant he could work the epidemic full time in what he knew was a very bad environment for a new health problem. It wasn’t that his bosses weren’t interested. He met weekly with the director of Centers for Disease Control; even the nation’s top health official, Dr. Edward Brandt, the Assistant Secretary for Health of the U.S. Department of Health and Human Services, called periodically for updates. But Brandt, like other top administration officials, supported the CDC budget cuts, believing that states could better handle their own health problems.

The cuts in funds meant a major reduction in force, Curran knew, and just about everybody working KS and PCP was sure of being fired any day. That included some key people. Harold Jaffe, for example, was an experienced veteran of work in gay sexually transmitted diseases and was rapidly emerging as the coordinator for the KS epidemiology. But he had lost seniority when he took a University of Chicago fellowship a year ago, and Curran had to pull every string he could to save Jaffe’s job.

Against this backdrop, Curran realized he couldn’t expect to hire any new people. He’d have to pillage other departments for his staff. Fortunately, a new mystery brought out the Sam Spade in the generally young and enthusiastic corps at CDC, and few problems the CDC had tackled were as mysterious as the emergence of these bizarre infections in such widely separated locales.

Countless leads needed to be tracked down. Hypotheses needed to be eliminated. Was the
Pneumocystis
outbreak really new or merely a phenomenon that had been unreported? Early investigations of the Legionnaire’s outbreak in 1976, for example, revealed that the pneumonia had been around for years; it just had never been detected until it so dramatically invaded the American Legion convention in Philadelphia and seized twenty-nine lives.

Drug technician Sandra Ford, with her methodical speed, went back through all her old pentamidine files to see whether there were previous PCP cases that might fit the disease’s new pattern. Sure enough, she found drug orders for nine patients who fit the new PCP victims’ profile perfectly—all cases reported during the last six months of 1980. Her search failed to turn up any gay pneumonia patients from much before 1979, strong support that this was something new.

Researchers also sought to determine whether the disease was indeed geographically isolated in the three gay urban centers. Did the detection of cases in the three centers make the patients appear to be only fast-lane gays because gay life tended toward the fast track in those cities? Was the disease all over gay America but in such low numbers that it had not been detected? The task force decided to check cities with high, middle, and low ranges of gay venereal disease as points of comparison. Los Angeles and New York ranked at the high end of the spectrum, Atlanta and Rochester, N.Y., were picked for the middle, and Oklahoma City and Albany, N.Y., for the low end of the scale. Officers from the CDC’s Epidemiological Intelligence Service, or EIS, interviewed dermatologists, oncologists, infectious disease experts, and internists, and scoured hospital records in those cities for possible unreported cases. They returned with the expected findings. Dozens of new cases were found in Los Angeles and, particularly, New York City, but few appeared in the middle- and low-range cities.

The CDC also needed a standard definition of what they were studying. After much arguing among members of the task force, a case definition of the still-unnamed syndrome would include people with Kaposi’s sarcoma, or
Pneumocystis
pneumonia among patients not undergoing chemical immune suppression. They had to be older than fifteen, to make sure no congenital immune cases were mistakenly included, and younger than sixty, so that none of the classic KS cases among elderly men were erroneously mixed in.

Like most of the task force, Curran hoped passionately that the diseases could be traced to poppers. After all, one bad batch of the inhalants could have triggered the immune problems. This would explain why the diseases appeared limited to just three cities; the contaminated vials could easily make the LA-SF-NY circuit given the bicoastal life-styles some affluent gays led. Everybody who got these diseases seemed to snort poppers. If it did turn out to be the drug, the CDC could simply turn into antipopper zealots. They would get the stuff banned, break all the bottles, and end the epidemic. That would be that.

The less hopeful side of Curran was dubious that this would be the answer. After all, some five million doses of nitrite inhalants were sold in America in 1980 alone; everybody in the gay community was using them, so it wasn’t surprising that these first cases should be doing it too. And, Curran sensed, the popper theory was too easy. This did not look like it was going to be an easy epidemic.

What they needed, the members of the task force agreed in July, was a case-control study. They would match up the KS and PCP cases with controls who did not have the disease. The differences between the cases and controls would point the way toward what was causing the epidemic. Harold Jaffe called the expert epidemiologists at the National Cancer Institute to get advice on getting the case-control study in gear. It was simple, they explained: Spend a year developing the interview document and deciding whom to use as controls. Conduct the interviews in the second year and spend the third year analyzing data and putting it together for a splendid article in a medical journal.

“In three years, we could do a good study on this,” the National Cancer Institute experts told him.

Jaffe wondered whether the experts had heard that, away from the comfortable laboratories of the NCI, people were actually dying of this thing. Such a process might be all right for delving into the problems of breast cancer or melanoma, but Jaffe was worried about the possibility that this disease was infectious. The CDC was not accustomed to the luxurious pace that characterized research at all the National Institutes of Health.

“We want that study in three months, not three years,” he said.

It was clear, however, that it would take weeks to get the questionnaire and protocol worked out for a case-control study. With eight of the forty-one first reported cases already dead—and many more obviously nearing death—the task force didn’t feel it had that amount of time. Curran and the task force made their decision in the second week of July: Get investigators into the field and talk to every single patient in the United States they could collar. Harold Jaffe, a California native, packed his bags for San Francisco; Brooklyn-born Mary Guinan flew to New York.

July 17

N
EW
Y
ORK
C
ITY

It had been another typical day of gay cancer studies for Mary Guinan. She had awakened at 6 A.M. to breakfast with gay doctors and community leaders and asked, again and again, “What’s
new
in the community?” What new element might have sparked this catastrophe?

She visited hospital rooms and sick beds throughout Manhattan for the rest of the morning and afternoon before returning to her hotel room at 7:30 P.M. Usually, she’d make phone calls that would last another four hours, but tonight she had promised to go out for an anniversary dinner with her husband, who had flown to New York for the occasion.

Over champagne, Guinan confided to her husband that this was the most emotionally draining assignment she had ever tackled in her public health career. With her leggy good looks and long blond hair, Mary Guinan looked considerably younger than forty-two. Her harsh Brooklyn accent and straightforward demeanor belied a maternal sensitivity that flavored her concern about the epidemic. Maybe that’s why she was such a good field investigator, colleagues thought. She came across as both strong enough to hear the blunt truth and empathetic enough to let you know she really cared. As the summer turned Manhattan hot and sticky, Guinan could feel her heart break a little more with each interview.

It was horrible, she said. The guys were young, bright, talented people, and incredibly cooperative. They struggled to resurrect every detail that might be helpful. At the end, they’d ask, “What’s the prognosis?”

Guinan would have to say she didn’t know. Like many cancer patients, a lot of the men were convinced that there was some cure out there; they just hadn’t been linked up with it. When they were, they’d beat this bug and it would just be some ugly nightmare that would fade slowly from their memory. Two weeks later she’d get a call telling her the patient was dead.

Guinan felt helpless and frightened. This was the meanest disease she had ever encountered. She strained to consider every possible nuance of these peoples’ lives. The CDC, she knew, needed to work every hypothesis imaginable into the case-control study. Had they been to Vietnam? Maybe this was a delayed effect of Agent Orange. Did their grandmother ever have cancer? Maybe this was some genetic fluke only appearing now. Or perhaps it was some health food fad gone awry.

Several of the cases, it turned out, weren’t gay men at all, but drug addicts. At the CDC, there was a reluctance to believe that intravenous drug users might be wrapped into this epidemic, and the New York physicians also seemed obsessed with the gay angle, Guinan thought. “He says he’s not homosexual, but he must be,” doctors would confide to her.

The problem was that the drug addicts didn’t seem to get Kaposi’s sarcoma; they got the far more virulent
Pneumocystis.
Most of them were dead before they even got reported to the CDC. Guinan carefully interviewed surviving addicts about their sexual habits. It was the most significant lead she developed in her weeks in New York City. Her drug addicts were not taken very seriously back in Atlanta, but years of syphilis interviews had given Guinan a sixth sense about when people were lying and when they were telling the truth. She didn’t feel that these people, so close to death, were lying about their sex lives. Hepatitis B struck both gays and intravenous drug users, she knew; as she had believed for several weeks, it was reasonable to assume a new disease might do the same.

The analysis had the ring of biological plausibility. A virus like hepatitis B could spread sexually among gay men and be transmitted through blood contact among intravenous drug users. Guinan had already made a mental note to watch for cases among hemophiliacs and blood transfusion recipients. As other prime victims of hepatitis B, they could be expected to pick up this bug too through blood products.

There was another point, or perhaps just an odd coincidence, Guinan had noted. She had walked in on one of her interview subjects as he was stepping out of the shower in his room in the ambulatory care apartments at New York University. Guinan was a bit embarrassed at first, but he was so charming with his soft French accent that she got on with her questions.

He had been quite sexually active, he confided rather proudly. The patient, a French-Canadian airline steward, had a sex life much like that of the other gay men Guinan had interviewed. Including his nights at the baths, he figured he had 250 sexual contacts a year. He’d been involved in gay life for about ten years and easily had had 2,500 sexual partners. In fact, one of his old tricks was in a New York hospital with something strange now, Gaetan Dugas said.

Guinan later mentioned the conversation to the task force, but nobody made too much out of it, even though Gaetan’s comment about sleeping with Jack Nau was the first time that two victims of the new epidemic were ever linked sexually. Because Gaetan was Canadian, the first person in his country to be diagnosed with AIDS, he was lost to immediate follow-up by the CDC. The case-control study included only those in the United States.

July 29

N
EW
Y
ORK
U
NIVERSITY
M
EDICAL
C
ENTER,
N
EW
Y
ORK
C
ITY

Larry Kramer was startled to see David Jackson in Dr. Alvin Friedman-Kien’s waiting room. An antique dealer, David was a friendly, nondescript man in his late thirties who sold odds and ends from a shop on Bleecker Street. Larry had come to talk to Friedman-Kien because he was frantic about the new cancer he had read of in
The New York Times.
Friedman-Kien was the doctor who had put together the early KS epidemiology for the CDC. None of his friends seemed that concerned, but Larry had more than a philosophical interest in the subject. He had a history of sexually transmitted diseases not unlike the KS victims he had read about in the paper. So did almost everyone he knew, leading Larry to think this could be something major. Still, the author wasn’t prepared to actually run into somebody he knew the moment he arrived at the office of the big expert. David started talking, almost to himself, as if he were trying to straighten everything out in his own mind.

“I was walking the beach at Fire Island and decided to turn over a new leaf,” David said. “I was going to eat right and watch my nutrition.”

His voice trailed off, and he looked pleadingly toward Larry and told him about seeing these funny purple spots.

“I don’t have any friends,” David said. “I’m ashamed to tell anybody about this. Will you come and visit me?”