And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (7 page)

“Nick is going to die if we don’t do something.”

“You’re being overdramatic,” Enno had said.

Saturday, August 9

N
EW
Y
ORK
C
ITY

“What do I call you?”

Senator Kennedy absently ran his hand through his graying hair while he quizzed Bill Kraus.

“Is it just gay? Or lesbians and gays? Or gay men and gay women?”

With the Democratic National Convention scheduled to convene at Madison Square Garden in just two days, the senator’s fight with President Carter was coming down to the wire. The key issue was Kennedy’s move for an “open convention.” If Kennedy could force a rules change to permit delegates to vote their consciences and not the dictates of the party primaries, he might be able to squeak to victory. It was his last chance. The convention’s Gay and Lesbian Caucus cocktail party presented a friendly audience since two-thirds of the gay delegates were already committed to the senator. As a member of the Platform Committee, Bill Kraus was the highest-ranking Kennedy delegate in the caucus, and he was going to introduce the candidate. Kennedy was trying to pick his way through the etiquette of eighties politics and get the salutation just right.

“Or is it lesbians and gay men?”

Bill rolled his eyes toward Gwenn Craig. Gwenn knew her friend was in ecstasy, squiring Kennedy around the party and not-too-subtly gloating at the New York delegates pledged to President Carter, Nobody from the Carter campaign had bothered to attend the gay event.

Kennedy settled on lesbians and gay men and started delivering his ringing endorsement of gay concerns, accompanied by a reminder that he was the first major candidate to endorse these issues. Bill couldn’t believe that New York activists were arguing that it was in gays’ interests to support a president who had done nothing for gay rights over Kennedy, who supported the entire gay agenda. It was typical New York gay shit, he had confided to Gwenn.

The New York gay leaders seemed to view homosexual rights as something of a driver’s license-they were privileges that were doled out by the state. Bill Kraus saw the issue simply in terms of what gays deserved. They were talking about rights, not privileges, for Christ’s sake. Bill would later reflect that so much of what would happen in the coming years could be understood in terms of what happened at that 1980 convention, where the split between the California and New York styles of gay politics had so clearly emerged.

It had started a month before at the Democratic Platform Committee in Washington, where Democrats drew up the statement of principles on which they would run their campaign. Bill Kraus wanted to push for the full set of gay demands. An executive order from the president could immediately end discrimination against gays by all federal agencies “with the stroke of a pen,” as Bill was fond of noting. He thought it was disgusting that foreign gays could be excluded from even setting foot in this country on the ground that they were “pathological” under a law passed during the McCarthy era. He wanted a promise to change the immigration laws, as well.

The proposals horrified the Carter camp, who were worried about the increasingly contentious fundamentalists in the former Georgia governor’s political base in the South. Kennedy promised enough delegates to take the issue to the convention floor in the form of a minority plank if that’s what gays wanted. Bill relished the thought of a floor debate on the issue. The gay cause needed that kind of nationally televised attention if it was to be taken seriously as a legitimate social issue, he thought.

The Carter camp would have preferred not mentioning gay rights at all, but, in an attempt to avoid the floor fight, they held out the compromise of a general plank opposing discrimination on the basis of sexual orientation. New York gays supported the president, saying gays would not even get so much as this plank if they caused trouble. Bill Kraus didn’t want to compromise and figured it was better to put the issue in front of 50 million television viewers than to get some nebulous statement in a document that nobody ever read anyway. With a compromise, they would get not only less than they deserved, but far less than they were politically capable of achieving. After the moderate position prevailed, Bill started talking openly of how New Yorkers were committed to “a strategy of enduring subservience.” He looked forward to getting to the convention, where the greater strength of West Coast activists could take charge.

“The problem lies not in evil personalities or traitorous acts, but rather in the political orientation which believes that an oppressed group gets what it needs by being careful not to offend the powerful,” Bill reported to the Milk Club after the platform compromise. “The problem lies in the desire to protect the little that we have gotten by not risking a fight for what we deserve. The problem lies in believing that what we have gotten is somehow a favor given by politicians rather than the politicians’ recognition of what we have the political power to demand and to get.”

The New Yorkers, Bill thought, were still unable to build the kind of power that was not dependent on the largess of the elite. It was because of all the closet cases in Manhattan, the Californians told each other. Without visibility and a concrete voting bloc, gays there would always be dispossessed and beholden to the kindness of strangers. And it would be their own fault. Begging for favors from party bosses was politics with a small “p,” Bill thought. Playing Politics with a capital “p” meant using the political system to establish the long-term social change you’re seeking.

For their part, New York gay leaders, led by lesbian Carter delegate Virginia Apuzzo, thought the Californians were far too militant for mainstream America. Not everybody could live like the out-of-the-closet types who were always rioting in San Francisco. You had to play the game, they thought, and that meant getting along in the real world. And Carter certainly was better than the Republican alternative who had just been nominated in Detroit, former California Governor Ronald Reagan.

Everybody applauded Senator Kennedy, who shook some hands before bustling out to another party. The gay caucus event, high above the East Side in the Olympic Tower, clearly was the “in” event for liberals that night. Gloria Steinem held court in one corner while a number of congressmen pressed Bill Kraus to be introduced. Nobody could get over how far gays had come since the 1976 Democratic Convention, where the gay caucus consisted of four delegates. Here, they had seventy-six delegates and alternates, and they had already achieved the long-elusive goal of getting their concerns written into the platform of the nation’s largest political party. It was also clear that the center of the gay movement had shifted west to California, where half the gay delegates lived. Politicos from the other nineteen states represented in the gay caucus huddled around the San Francisco delegates to hear stories about Harvey Milk and how gays had engineered their political power. The gay cause now belonged to the more aggressive activists like Bill Kraus, not the moderates from the East. The next day, Bill was unanimously elected co-chair of the gay caucus.

Kennedy’s defeat for both the open convention and the nomination came as a bitter disappointment to Bill and his allies. The Democrats were headed for certain defeat with a loser like Carter at the head of the ticket, Bill moaned to Gwenn Craig. Despite the large gay presence, the East Coast media also mostly ignored the new political force at the convention. Bill was still eager to get the gay cause on television and pushed the notion of nominating a gay vice-presidential candidate; that way the nominating speeches could make television. Because he wasn’t the constitutionally required age of thirty-five, Bill couldn’t go for it himself. But the gay delegates quickly fanned out throughout the convention and, at the eleventh hour, gathered the necessary petition signatures for the vice-presidential nomination of a black gay leader from Washington, Mel Boozer. On the morning of the final day of the convention, Bill Kraus climbed onto the podium to deliver the nominating speech.

“We are here,” he said. “We are here with strength. We are here with pride. And I am happy to say we are here with friends. Many of you worked with us to pass this party’s platform plank, which calls for the first time for lesbians and gay men to receive the same protection against discrimination which all other Americans enjoy.”

On the flight back to San Francisco, Bill Kraus and Gwenn Craig consoled themselves with the thought that it would not be utter disaster for gays once Reagan was elected. A Democratic Congress could probably hold back the anti-gay legislation of the New Right. Although the other points on the agenda they held dear would suffer from spending cuts, the gay cause was essentially a battle for social legitimacy, not any specific spending programs. And the most basic rights of being free from police harassment and job discrimination were being won not on the federal level but in the major urban areas where gay clout was concentrated. Ronald Reagan or Jerry Falwell couldn’t take away their local political power. Thank God, gays weren’t after any money for social programs.

Bill nursed a vodka and tonic and fumed about the wimpy New Yorkers. If a situation ever arose in which gays needed more than reassurances of liberal tolerance, he thought, the New Yorkers would get the shaft.

Late August

V
IRGINIA
B
EACH
, V
IRGINIA

The psychic sat stoically listening to Nick recount his problems. Nick’s steel-gray eyes betrayed his desperation. He had been sick all year now. Would anything help?

Enno Poersch had wanted his younger lover to try the Mayo Clinic in Minnesota, but Nick instead made the trip to the psychic healer in the Shenandoah Valley. The psychic turned on the portable tape recorder and lapsed into a trance. “You are suffering from toxoplasmosis,” the psychic said, finally.

Nick didn’t know what the hell he was talking about.

The psychic spelled it out, but that didn’t help much. Toxoplasmosis, it turned out, was some cat disease. Big help.

After his return to New York City, Nick stayed with a friend while Enno closed up the house on Ocean Walk. Though Enno remained optimistic, Nick deteriorated rapidly. Just rising from his bed required a herculean effort of thought and strength. First, Nick would consciously take some moments to make the decision to rise; there was no longer any spontaneous physical movement. Once decided, he would set about each separate act required in rising, from moving his legs, and his back, to each movement required to put on his shoes and pants. By September, such a process of rising and dressing consumed an hour. When Nick walked, every step commanded more conscious effort, placing one foot in front of the other. At times, Nick looked as though he would collapse from lack of support.

Most frightening to Enno were the bizarre changes in Nick’s body. His frame seemed to be curling in upon itself. Nick became pigeon-toed while his trunk hunched over, his shoulders turning toward each other as if he were returning to some macabre and wasted fetal position.

Nick’s friend was right, Enno realized. Nick was dying. He replayed the psychic’s tape, trying to scour some clue that might resurrect his friend. The cassette again revealed only that strange word, spelled out slowly by the psychic: “T-O-X-O-P-L-A-S-M-O-S-I-S.”

September 1980

C
OPENHAGEN

Gasping, struggling for breath, the thirty-six-year-old fought against suffocation in his small, neat room in the
Rigshospitalet.
His palms were flushed light blue from lack of oxygen. The chart dangling from the foot of his bed had categorized the illness in a noncategory: unable to find specific diagnosis. By now, the young man’s doctor, Jan Gerstoft, knew there was little he could do except watch his patient die.

Gerstoft knew why the agricultural engineer was left to so fiercely struggle for oxygen; that was not the mystery. Microscopic protozoa were filling the tiny air sacs of the man’s lungs. A typical man has 300 million of these air pockets where the oxygen from inhaled breath eases into the bloodstream as part of the body’s most basic fueling process. The air sacs, Gerstoft knew, also offer a warm, even tropical climate for the unseen
Pneumocystis carinii
organism.

This newly discovered protozoan had been found in guinea pigs back in 1910 by a Brazilian scientist, Dr. Carini. Three years later, doctors at the Pasteur Institute deduced that it lived quite comfortably in the lungs of ordinary Paris sewer rats. Not until 1942, however, was the tiny creature found to be living in people. A few years later, the first known outbreaks of pneumonia caused by the
Pneumocystis carinii
organism were reported in the orphanages of postwar Europe. Subsequent studies showed that the insidious protozoan, which traces its heritage directly to the most primitive one-celled animals from which all life evolved, can be found just about everywhere in the world’s inhabited terrain. It is one of tens of thousands of creatures that are easily held in check by people’s normally functioning immune systems.

Immune problems were what had always presaged the appearance of
Pneumocystis
pneumonia, whether among children subjected to overcrowding and poor nutrition or among people whose lymphatic systems were knocked out by cancer. When modern medicine learned how to intentionally suppress the immune system so the body would not reject transplanted kidneys and hearts,
Pneumocystis
flared sporadically, eager to take advantage of any opportunity to thrive in its preferred ecological niche, the lung. The disease, however, would disappear spontaneously once the immune system was restored. And the little creature would return to an obscure place in medical books where it was recorded as one of the thousands of malevolent microorganisms that always lurk on the fringes of human existence, lying dormant until infrequent opportunity allows it to burst forth and follow the biological dictate to grow and multiply. Humankind’s evolution as a species that could survive diverse continents and climates was due in no small part to its ability to acquire immunity to such pests.

All this evolution, however, had been short-circuited for the man slowly suffocating in Copenhagen in the chilly days of autumn 1980. Something had created a deficiency in his immune system; this was the easy way to explain how the
Pneumocystis
microbe had taken such comfortable residence in his lungs.

Dr. Gerstoft had come from the State Serum Institute, Denmark’s governmental research agency, to study the less easily explained part of the man’s diagnosis. What had happened to this man’s immune system, and, of course, what might help? Intrigued, Gerstoft performed test after test, but nothing could explain why the protozoa had reproduced so prodigiously in the man’s lungs, making him sweat and strain for wisps of oxygen. A review of his recent medical history revealed nothing remarkable. He was an agricultural engineer connected with Denmark’s dairy industry, and in 1979, he had visited New York City to attend training courses in the proper use of milking machines. No clue there. He also was homosexual, but in Copenhagen, one of the world’s most comfortable cities for gays, this was a matter that raised neither eyebrows nor medical suspicions.

Perhaps it should have, Gerstoft thought later, because just weeks before, he had seen another gay man who, for no apparent reason, was wasting away, suffering from unexplained weight loss and a frighteningly aggressive outbreak of anal herpes. The thirty-seven-year-old man, who was well known in the theater crowd of the Danish capital, had mentioned that his lover was also mysteriously ill.

Second thoughts, of course, would come much later, because even in our advanced times it is still not uncommon for people to fall sick and even die for unexplained reasons. In any event, the agricultural engineer was the first to die, passing away that September at the
Rigshospitalet,
not far from where a surgeon named Grethe Rask had succumbed to the same pneumonia a little less than three years before.

These two deaths in Copenhagen presented their own salient clue to the identity of a killer that quietly stalked three continents in 1980. In Europe, the microbe’s first victims were largely linked to Africa. Just weeks after Grethe Rask was rushed from South Africa to Copenhagen, a thirty-four-year-old airline secretary from Kinshasa took advantage of her employment travel benefits to fly her sickly daughter from Zaire to Belgium. The woman’s three-year-old was suffering from oral candidiasis, a yeast infection of her mouth. One of the woman’s children had already died of a respiratory ailment stemming from strange problems with her immune system, problems that started with a case of this candidiasis. Within a few weeks of her arrival in Brussels, the mother was also suffering from the oral yeast infection. By mid-September, her lymph nodes were swollen, she was rapidly losing weight, and she was suffering from a severe infection of cytomegalovirus. The doctors could do nothing as waves of infection washed over the mother’s body. By January 1978, as she withered away from severe diarrhea caused by an untreatable salmonella infection in her intestines, she flew back to Kinshasa, where she died a month later.

Weeks after this woman’s death, baffled scientists in Cologne tried to understand why a successful young concert violinist should contract a case of Kaposi’s sarcoma. The German musician was gay and had spent much of the decade traveling across Europe, but this provided no clue as to why he should fall victim to an old man’s disease rarely seen in northern Europe. Nor did it explain why his lymph nodes seemed to explode three months later, as if they were fighting some unseen infection. Answers were no more forthcoming in the excruciating months ahead while doctors helplessly watched the forty-two-year-old’s body be bombarded with disease after disease until finally, in January 1979, he died.

It was at about that time that Belgian doctors in Zaire began reporting an upsurge in cases of cryptococcosis at Kinshasa’s Memo Yemo General Hospital. By 1980, physicians could document fifteen cases of this disease. The cysts that spread
Cryptococcus
are found in bird droppings the world over. The problem, therefore, was not the presence of new
Cryptococcus
germs but of some weakness in the patients’ immunity that let the disease take root.

In Paris, the first case of the baffling pneumonia also had an African connection, appearing in 1978 when a Portuguese cab driver suddenly experienced difficulty breathing. The short, swarthy man had returned only a year or so before from Angola, where he had served in the Portuguese navy during the Angolan Civil War and, later, as a trucker, driving Angola-Mozambique routes that cut through the narrow coastal spit of western Zaire. Dr. Willy Rozenbaum of Claude-Bernard Hospital was called in to see the man in 1979 and easily diagnosed the parasite
Pneumocystis carinii.
Unable to fathom what immune problems might have engendered the pneumonia, Rozenbaum enlisted immunologist Jacques Leibowitch to try to solve the problem. Leibowitch was accustomed to seeing bizarre diseases among people who traveled to exotic parts of the world; it seemed he was always treating some airline pilot or steward for some obscure infection. The doctor first tested the man for lymph cancer, the condition that often proves to cause such rare bouts of immune deficiency. But the tests yielded nothing, as did further blood studies. Specialists from all over Paris were trooping to the man’s bedside, drawn both to struggle for a cure and to explore an intriguing medical mystery. Meanwhile, colonies of thick white fungus bloomed in the patient’s mouth and throat, while warts caused by ordinarily benign papovavirus swept over his body, covering his arms and legs.

The doctors were downright awestricken when the man’s brain became infected with toxoplasmosis, another rare parasite. Nothing they could do yielded any help, however, and in 1980, the man returned to his wife and five children in Portugal to die. As he was nearing death in Iberia, two women were admitted to the intensive care unit of Claude-Bernard with
Pneumocystis.
One was a Zairian woman, who, like many in the elite of that French-speaking region of central Africa, had sought treatment in the more advanced hospitals of Paris after her African doctors could find no effective treatment for her. The second woman was French, but she, too, had lived recently in Zaire.

The European fall turned to winter. By the time winter was turning to spring, all of them—the cab driver in Portugal and the two women in Paris—had drowned in the primeval protozoa that had filled their lungs.

In the United States, unexplained maladies from a mysterious new syndrome would be traced back to 1979. It was on a balmy September day in 1979 that Rick Wellikoff had been sent to Dr. Linda Laubenstein for blood studies. She duly noted the generalized rash that resisted treatment, and the enlarged lymph nodes all over his body. Laubenstein surveyed the man and assumed he had lymph cancer. Later, a dermatologist told Linda that the man’s rash was a skin cancer called Kaposi’s sarcoma.

“What the hell is that?” asked Laubenstein.

It didn’t take her long to find out all there was to know about it because the world’s medical literature on the disease didn’t take much time to read. The cancer was discovered originally among Mediterranean and Jewish men in 1871. Between 500 and 800 cases of this disease had been documented in medical books in the last century. It usually struck Jewish and Italian men in the fifth or sixth decade of their lives. In 1914, Kaposi’s sarcoma, or KS, was first reported in Africa, where subsequent studies discovered that it was the most common tumor found among the Bantus, the disease generally remaining within distinct geographic boundaries in the open savannah of central Africa. There, KS patients represented one in ten cancer cases.

Typically, a victim would develop some flat, painless purple lesions and die much later, often of something else. As cancers went, Kaposi’s sarcoma was fairly benign. In more recent years, reports circulated of a new, more aggressive form of the sarcoma in central Africa, but that did not appear to be what had stricken Rick Wellikoff. The lesions were not rapidly covering his body and internal organs, as had been reported among the Africans. Besides, he had never been to such exotic ports. The only characteristic that made Rick mildly different from the typical New York schoolteacher his age was that he was gay.

Given the rarity of the cancer—and the novelty of a case in such a young, non-Mediterranean man—Linda decided to follow Rick closely and mentioned him to several other doctors. She would have to write it up some day.

Two weeks after she first saw the schoolteacher, she got a phone call from a colleague at the Veteran’s Administration Hospital, a few blocks south of New York University Medical Center on First Avenue.

“You’re not going to believe it, but there’s another one down here,” he said.

Laubenstein quickly went to the VA Hospital to visit the other Kaposi’s patient who seemed very similar to Rick. The man was much more handsome, to be sure; after all, he was a model. But he was thirty-seven years old, homosexual, and, in the strangest twist, the pair shared mutual friends. It was uncanny. Among their acquaintances, they said, was a dreamy blond flight attendant from Canada. He had an unusual name that stuck in Linda’s mind.

“Gaetan. You should talk to Gaetan,” the first two gay men to be diagnosed with Kaposi’s sarcoma in New York City had told Linda Laubenstein in September 1979.