And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (25 page)

“We’re not going to end up being the heroes of this epidemic,” sighed Gottlieb. “We’ll be the villains.”

Conant saw the point immediately.

“They’ll say we didn’t tell them well enough, that if we had articulated what would happen better, they would have understood and done something to prevent it,” said Gottlieb.

They were failing, Conant knew. People weren’t listening. Nothing was more frustrating than this kind of failure, particularly for doctors, men who generally had accomplished every challenge confronting them, from the rigors of medical school to the wielding of “miracle” drugs. But this wasn’t like not making an “A” in physiology, and the consequences wouldn’t mean extra homework next semester.

Gottlieb’s wife figured if they just got away for a couple of years, they could come back a little later, when it was all over.

Conant privately viewed the talk as extremely optimistic. There wouldn’t be any getting away from this disease if you left for just a couple of years. If you wanted to get away from it, he thought, you’d better plan on leaving forever.

On the flight back to Washington, D.C., that night, Tim Westmoreland was cheered that the testimony had gone so well. The dimensions of the future were clearly outlined: tens of thousands affected by a syndrome that would soon cost the society tens of millions in hospital care alone. The National Cancer Institute’s embarrassing commitment of a minuscule $1 million to research for the next year should alert any science writer to the cynical lack of interest the National Institutes of Health has in the problem, Westmoreland thought, and Curran certainly dropped some hints about the vast studies that needed to be undertaken. Westmoreland waited for the media coverage. And waited.

The television networks and even the local stations, it turned out, didn’t bother to cover the event. Westmoreland had hoped that at least medical journals and health newsletters would send somebody to write up the testimony since this clearly would be of interest to their targeted readerships, but the hearing was ignored. The
Los Angeles Times
wrote one of its first stories on the epidemic from the hearing testimony, but the story’s lead was not on the critical public policy questions raised by the speakers, but on the only facet of the GRID story that seemed to have any interest to newspaper editors. “Epidemic Affecting Gays Now Found in Heterosexuals,” the headline read.

April 18

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Don Francis was toiling to get his viral lab together on the warm Sunday afternoon when Jim Curran phoned and linked up Bill Darrow on a conference call. Darrow told Francis about Gaetan Dugas and the connections between twenty of the first GRID cases, mainly in Los Angeles. He still had some more tracking to do, but Darrow was convinced that he had the evidence the task force had been seeking to substantively prove an infectious disease. Francis was relieved, hoping that new studies might goad the slumbering National Institutes of Health into action. With proof of an infectious agent, the onus for research would shift from the National Cancer Institute to the National Institute for Allergy and Infectious Diseases. They certainly couldn’t be any slower than NCI. The information also spurred his longing for a viral lab. The nation couldn’t depend on the NIH to study the epidemic. Funding remained a major impediment. Francis was now flying between Atlanta and Phoenix every other week or so, and he was having a hard time finagling so much as the $150 airfare from CDC brass. With the cluster studies, Francis hoped, somebody upstairs would see how catastrophic this epidemic would become. Then they could get down to business.

By the time Bill Darrow’s research was done, he had established sexual links between 40 patients in ten cities. At the center of the cluster diagram was Gaetan Dugas, marked on the chart as Patient Zero of the GRID epidemic. His role truly was remarkable. At least 40 of the first 248 gay men diagnosed with GRID in the United States, as of April 12, 1982, either had had sex with Gaetan Dugas or had had sex with someone who had. The links sometimes were extended for many generations of sexual contacts, giving frightening insight into how rapidly the epidemic had spread before anyone knew about it. Before one of Gaetan’s Los Angeles boyfriends came down with
Pneumocystis,
for example, he had had sex with another Angelino who came down with Kaposi’s sarcoma and with a Florida man who contracted both Kaposi’s and the pneumonia. The Los Angeles contact, in turn, cavorted with two other Los Angeles men who later came down with Kaposi’s, one of whom infected still another southern California man who was suffering from KS. The Floridian, meanwhile, had sex with a Texan who got Kaposi’s sarcoma, a second Florida man who got
Pneumocystis,
and two Georgia men, one of whom got
Pneumocystis
and another who soon found the skin lesions of KS. Before finding these lesions, however, the Georgian had sex with a Pennsylvania man who later came down with both
Pneumocystis
and KS.

From just one tryst with Gaetan, therefore, eleven GRID cases could be connected. Altogether, Gaetan could be connected to nine of the first nineteen cases of GRID in Los Angeles, twenty-two in New York City, and nine patients in eight other North American cities. The Los Angeles Cluster Study, as it became known, offered powerful evidence that GRID not only was transmissible but was the work of a single infectious agent.

The study offered further clues into the most-feared aspect of the new disease—the long asymptomatic carrier state. By studying ten patient pairs who had contact with only one diagnosed patient, Darrow had calculated the mean incubation period of the disease for these men to be at least 10.5 months. Gaetan, for example, had infected at least one man before he had any symptoms of GRID himself. Another two had contracted it from Gaetan while he showed signs only of lymphadenopathy. Gaetan had his lesions when he spent Thanksgiving weekend with the Orange County hairdresser.

A CDC statistician calculated the odds on whether it could be coincidental that 40 of the first 248 gay men to get GRID might all have had sex either with the same man or with men sexually linked to him. The statistician figured that the chance did not approach zero—it was zero.

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RANCISCO

He should have seen the end coming, Matt Krieger thought, as he began unpacking the crates and boxes in the cottage perched on a quiet hill overlooking the Mission District. He and Gary Walsh were supposed to be moving together into the small whitewashed home with the white picket fence. Now, Matt realized that for them, buying a home was like straight couples who have children in hopes that it will keep a failing marriage together. Gary had turned into a militant introvert in recent months, staying in his “self-expression room,” writing poetry, doing sloppy fingerpainting, or just dancing around to his favorite Beatles records. He was pulling inside himself, as if he was preparing for something important, though it was never clear exactly what. Their relationship was clearly over. Matt was moving into their dream house alone.

Matt, meanwhile, had busied himself with his usual socially conscious activities. He was on the board of directors of a group that was trying to urge gay men to get the hepatitis vaccine. The campaign was a challenge. Without government support for the vaccine, companies had jacked the price up to $150 a vaccination in an attempt to pull some profit from a multimillion-dollar research program that clearly would produce nothing but losses. It was during this involvement that some doctor started talking casually to Matt about gay cancer. “It’s going to get much worse,” he said matter-of-factly. “This is only the beginning.”

Gary, meanwhile, had turned to his old friend and colleague Joe Brewer, who was also single. The pair decided that they would try to be everything that lovers are to each other except bed partners. The worst part of being single, they agreed, was having to take vacations alone. They started planning a lavish trip to Mexico together for Christmas and organized a retreat for themselves at the Russian River resort area north of San Francisco.

At the last minute, however, Gary had to cancel. He was tired but couldn’t say exactly why.

April 28

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Exactly one year after Sandra Ford wrote her memo alerting the Centers for Disease Control to unconfirmed reports of “bone sarcoma” and the mysterious orders for pentamidine, somebody made a cake for the KSOI Task Force and took it down to the narrow corridors of Building 6 where the GRID offices were clustered. People chatted briefly, drank a little champagne, and tried to avoid discussing the central reality that was emerging in their harried, overworked, and understaffed research group. The epidemic was moving faster than they were. They had no concept of where it would pop up next and no idea of how to stop it. And nobody outside this building and a handful of hospitals in a few big cities seemed to care. Finally, somebody took a butter knife smuggled from the cafeteria and cut into the icing, dissecting its legend: “Unhappy Anniversary.”

May 4, 1982

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AN
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RANCISCO

Even over the phone, Cleve Jones could tell that Michael’s red hair was perfectly in place, severely
Gentleman’s Quarterly.
His long legs undoubtedly were stretched in one of those delicious poses that so often got him on the pages of
Blueboy
and
Torso,
Cleve thought. Cleve preferred the earnest young idealists of Castro Street to the sophisticated Manhattan scene, but there was something undeniably alluring about the aristocracy of beauty that gay men had fashioned in New York. Cleve was glad he had been accepted into their ranks, even if only as a spunky interloper, during his frequent trips to New York City. That also helped him recognize so many of the names Michael listed as among the walking wounded of this gay cancer.

“A lot of people are sick,” said Michael, his voice worried. “Everybody’s getting it.”

Michael told Cleve about the New Year’s Eve party he had attended to welcome in 1980. All the beautiful people had been there, and now a lot of those beautiful people were dead.

“Everybody at that party has gotten it except me,” he said.

Cleve didn’t say anything.

A note of confidence crept back into Michael’s voice. “I think the government did it.”

Cleve was more comfortable with this; the conversation was turning familiar.

“I don’t know anybody who doesn’t think the government might not have done it,” Cleve confided.

By now, there were lots of theories and Cleve had heard them all. In New York, the epidemic seemed to snipe vengefully at the top of Manhattan’s ziggurat of beauty. People called it the “Saint’s disease” because everybody who got it seemed to be among the guys who danced all night at that popular disco. Maybe they put something in the drinks, the water, the air. In San Francisco, the epidemic spread first through the leather scene. Gay men began suspiciously eyeing barroom ionizers that helped eliminate cigarette smoke. Maybe those gadgets were emitting something else, something deadly. Theories abounded, in part because it was strangely reassuring to think that something out there had brought this misfortune on homosexuals, not something in which gay men themselves could have had any part.

Nothing seemed out of the question, Cleve thought. And everybody was worried. The visions of Simon Guzman, lying sick and disfigured, kept haunting Cleve, and sometimes, in the cool darkness of the San Francisco spring, he lay in bed sweating, terrified at what might lie ahead.

M
ANHATTAN

“The house staff is terrified,” said the hospital chief of staff with a certain self-conscious tick. “We’re getting too many of these patients. The administrator won’t let me admit any more of them.”

Rodger McFarlane knew what the doctor was saying, even though he wasn’t saying it: No hospital in New York City wanted to become known as specializing in this homosexual disease. Given the predictions coming out of Atlanta of exponential increases, hospitals figured they’d be swamped a few years down the road if they became too well known for GRID treatment. Besides, the nurses and doctors were edgy about word that this was spread like hepatitis. Hospital staff long had been a key risk group for hepatitis, and they didn’t want to become a risk group for a deadly, incurable disease.

Rodger was left arguing on what was another, typical night of his volunteer work for the Gay Men’s Health Crisis. Sitting in the emergency room was a terrified patient, barely able to breathe because the
Pneumocystis
protozoa were filling up his lungs. Meanwhile, Rodger’s beeper was telling him that the GMHC hotline was ringing again, and he wondered how he got involved in this mess.

Rodger McFarlane had opened the GMHC hotline on his personal answering service shortly after the Garage dance benefit. He received 100 calls the first day. The gay men of Manhattan were panic-stricken and there was nowhere else to turn. Rodger had never felt discriminated against as a homosexual in all his twenty-seven years, and he never understood the radical politics the activist types always spouted. Now, however, he could see something was wrong. People were suffering and the city wouldn’t do anything about it. Half the GRID cases in the country were in New York City, and you barely heard a whisper about it from the mayor or the health officials. Gays were going to have to establish their own services or be left to die in shame, fear, and isolation. As he cabbed home, Rodger started mapping the service plans in his mind. He had always viewed management organization charts as the best cure for nebulous anxiety.

As he neared home, the beeper summoned Rodger again, this time to Beekman Downtown. Rodger phoned the medical center and talked to a mother who was terrified because the doctors said her son was crazy and hallucinating. Nobody would do anything to help him. Rodger called the doctor, hoping he’d be able to handle it on the phone. The physician didn’t want to talk to some guy from the Gay Men’s Whatever. When Rodger arrived at the hospital, the patient seemed utterly serene, lying in his room.

The young
Pneumocystis
sufferer, it turned out, had staged the insanity in hope of getting released from this hospital and into some psychiatric care. Then he could slip away and commit suicide. Rodger calmed everybody down and finally made it back to his apartment, where he collapsed.

A few days later, he heard that the young man had died, not by suicide but of his
Pneumocystis,
at Beekman Downtown.

May 6

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Don Francis was relieved when he got the call from Dr. Robert Gallo’s lab at the National Cancer Institute. An associate of Gallo said that he had started culturing lymphocytes from a GRID patient in a special culture medium Gallo had developed that contained interleukin-II. The IL-II, Francis recognized, was a perfect addition to a growth medium for lymphocytes. By easily being able to grow lymphocytes, Gallo had already overcome a formidable research barrier. Some viruses eluded decent study simply because scientists couldn’t figure out how to propagate their host cells.

Don Francis, Max Essex from Harvard, and Gallo’s lab were now in almost constant contact on GRID. At a scientific conference at the National Cancer Institute’s Cold Spring Harbor facility in March, Essex had hypothesized that GRID was caused by a new infectious agent and suggested it might be a retrovirus similar to feline leukemia. The other doctors had given the theory only a polite reception, but Gallo had urged Essex on and started dabbling in the disease at his own lab.

Francis was glad to have the lab at work, but he worried that other major retrovirology labs needed to get to work on GRID fast and get on it full time. Francis had spent much of the spring trying to interest the virologists at the Center for Infectious Diseases of the CDC, but they just wouldn’t get excited over his unlikely notion that a retrovirus was behind the syndrome. They also had other work to do. Nobody was eager to take on new projects at a time when they barely had the staff to accomplish their primary interests. At Harvard, Max Essex was working GRID part time, convinced that the CDC would come up with the answer to the GRID problem any day, as they did with Legionnaire’s. Bob Gallo’s lab was spending a fraction of its time on the problem. Even though Francis was grateful for any effort he could engender from the lethargic National Cancer Institute, one or two labs weren’t enough, he felt. They might get off on a bum lead and retard research at a time when people were dying.

Francis decided it was time to get down to some serious groveling. Other researchers needed to get involved. People were dying. Couldn’t they see how important this was?

May 12

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Drawing largely on the work that Donna Mildvan and Dan William started in New York City in early 1981, the
Morbidity and Mortality Weekly Report
on “Generalized Lymphadenopathy Among Homosexual Males” was released from Atlanta, the first
MMWR
publication on any aspect of the epidemic in nine months. Of course, nobody knew what was going to happen to these lymphadenopathy patients, but the report noted that these symptoms already had appeared among 44 percent of the KS patients and 23 percent of the
Pneumocystis
patients diagnosed between June 1981 and January 1982. It was a bad sign.

“Causes for the persistent lymphadenopathy among patients discussed above were sought but could not be identified,” the report said. Doctors should be alert for the symptoms, the article concluded, most notably fatigue, fever, unexplained weight loss, and, of course, nightsweats.

Every week or so, a new Kaposi’s sarcoma or pneumonia case would appear in some new region of the country, and the CDC would send someone to investigate the first GRID case in southwest Texas or some other remote place to see if, perhaps, that person might offer the clue. By May 18, 355 biopsy-confirmed GRID cases had been counted in twenty states. Of these, 136 were dead. New York City accounted for 158 of the cases, or about half, while California was home to 71 cases, including 40 in San Francisco. About 79 percent of all cases were among gay or bisexual men. Nearly 12 percent were among heterosexual men who were intravenous drug users, although the CDC still wasn’t saying this for public consumption. Another 13 cases were among heterosexual women.

Trying to track not only the gay cases but the newly discovered Haitian cases and the growing numbers of intravenous drug users and prisoners, the CDC Task Force sometimes wondered how many cases really existed in the United States, aware that their numbers were months behind anything resembling the reality of the epidemic. Staffing shortages had forced them to rely on “passive reporting,” which meant they sat in Atlanta and hoped that health officials actually were calling in their cases. They had neither the money nor the personnel to conduct the active surveillance they would have preferred. At times, their sleep too was dogged by fears of what might be out there, what they might not be seeing.

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Dr. Dan William was struck by the utter disparity among gay men facing the specter of death for the first time. Some blithely ignored the diseases, no mean task given the
New York Native
’s singularly thorough coverage of the epidemic. Others lived in unrelenting terror, racing to William’s Upper West Side office at the first fever, sniffle, or zit, and many had good cause to worry, William soon noted. The numbers of gay men with lymphadenopathy were increasing geometrically. Others just seemed dragged out and listless, while the sleep of so many more was drenched with terrifying nightsweats that left their sheets soaked with perspiration, their hair saturated with the salty fetor, and their bodies limp with exhaustion. The nightsweats themselves seemed a particularly hellish ordeal that was virtually a rite of passage into this most devilish disease.

New manifestations of the immune disorders, however, were appearing faster than William could chronicle them. The oral candidiasis, or thrush, was the most common precursor of the more serious GRID disease, William noted, often defying any form of treatment. For the past six months, people also were coming in with excruciatingly painful outbreaks of herpes zoster, known most commonly as shingles. The shinglelike lesions typically appeared on the face or shoulders, spreading fulminatingly over the body, with each tiny scab capable of shooting a hot, piercing pain at the slightest touch. The shingles seemed most often to strike people with the lymphadenopathy, and by the end of 1981, William had begun keeping a list of his shingles patients on the personal computer in his office. He wondered what would happen to them, what this meant. In December 1981, there were eleven cases, and by June 1982, there were seventeen shingles patients. Sometime around June one of the early shingles patients came in to see William about an unusual purple spot. It was Kaposi’s sarcoma.

The fear began around this time—something entirely new to worry about after eighteen months that rarely let William slip by without some new insight into the horrors that lay ahead. Maybe all these people with swollen lymph nodes were going to die. Perhaps the new virus was like some lurking jungle predator, striking the stragglers first. That would explain the extreme life-styles of the early cases; they were out dancing in the freeway, ensuring they would be the first to get run over. Their already overtaxed immune systems wouldn’t put up much of a fight either. The virus would circle the rest too, William worried, bringing some fatigue and nightsweats, and then causing this or that yeast infection in the mouth, and later, say, a serious case of herpes or shingles that might go away. Then, at some unpredictable point in the future, everybody with this may just up and die.