And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (19 page)

The interview was supposed to last for nine minutes but it was cut to 150 seconds because of unrest in Lebanon. Curran could barely stifle a groan when interviewer Frank Gifford read aloud the startling numbers about deaths and increasing cases and began the session with a question that defied a polite answer.

“This is a terrible problem,” Gifford said. “How come nobody’s paying any attention to it?”

S
AN
F
RANCISCO

As soon as Matt Krieger heard that Dr. Marc Conant was going to be distributing a brochure on Kaposi’s sarcoma at the American Academy of Dermatology convention in San Francisco, he wanted to help stage a press conference. Although Matt had quit his full-time job at the UCSF News Services Bureau and divided his time between freelancing and finding a home for himself and his lover Gary Walsh, he saw gay cancer as something important, even if he couldn’t explain precisely why. Marc Conant and Jim Groundwater had spent their own money putting together a full-color brochure on KS, including pictures of Ken Home’s lesions. They spent the morning before the convention’s final session putting a pamphlet on every chair in the sprawling new Moscone Convention Center.

On his way home, Matt studied the pictures of Ken Home’s lesions and he thought about Gary. Matt’s mind finally gave way to the wrenching terror that Gary’s funny skin rashes, little health glitches, and that sore on his elbow that didn’t go away for the longest time were symptoms of gay cancer.

Matt burst into the flat on Dolores Street on the verge of a full-scale anxiety attack.

“I’m afraid you’re going to die,” Matt told Gary.

Gary rolled his eyes.

“Don’t be ridiculous.”

December

A
ARHUS
, D
ENMARK

Washington weather provided nothing so severe as the bitter winds blistering off the North Sea over Aarhus. At night, red hearts bobbed abruptly in the wintry blasts over doorways of crowded shops, all gaily decorated for the Feast of the Hearts. Dr. Bob Biggar preferred Scandinavia in warmer seasons, but he sensed that he could not delay his research, even if the National Cancer Institute did not consider the epidemic a priority item. Biggar had paid his own way to Denmark and had put together a group of 259 Danish gay men to study.

His research, however, had gotten off to a disquieting start. Although he had hoped Aarhus would offer an uninfected pool of research subjects, Danish authorities reported that Copenhagen already had five cases of the mysterious gay disease. Some of the particulars reconfirmed Biggar’s suspicion that this was an infectious disease. One victim was the sexual partner of another. Another older man lived a closeted life in Denmark but went to New York City once a year for a month, during which he accumulated as many black male sexual partners as he could. The link to New York was the strongest argument for a probable viral cause.

As he wrapped up the first phase of the Danish study, Biggar began framing his conclusions into a scientific paper, hypothesizing a viral agent as a cause for the epidemic. “The Evidence for a Transmissible Agent” would be the most prescient work of his scientific career to that point, as well as the most widely ignored.

L
OS
A
NGELES

The most definitive evidence for a transmissible agent appeared in an offhanded sort of way in Dr. Joel Weisman’s comfortable office in Sherman Oaks. It was late 1981 or during the first weeks of 1982; the date was later lost, although it marked one of the most profound conversations of the still-unnamed epidemic.

Another friend and longtime patient had died of
Pneumocystis.
Weisman was talking with that man’s lover, a chatty fellow who always knew everybody’s business. He was an old friend and didn’t mind sharing a number of unsettling connections he had been making in recent weeks. There were five or six guys who were sick, he said, and they had all been to these parties together. This guy had sex with that guy who had sex with this other guy, and now they were all dead or dying.

Weisman stared at the cool gray walls of his office while the man continued. Suddenly, he understood everything the man was saying. Weisman knew all the guys that he was talking about, and in his mind, Weisman began seeing the relationships, almost as if they were in little circles with arrows between them, going from one to the other.

“Oh my God,” he gasped. “You’re telling me something I’ve hypothesized. It’s true.”

Weisman later recalled that moment—in the office where the nation’s first reported
Pneumocystis
case had walked in a year before—to be the most terrifying instant of his life. There was a new virus that was killing gay men. Jesus Christ, some of these parties happened two years ago. It could be all over the place by now. God only knew how many people were going to die.

January 1982

C
ENTERS FOR
D
ISEASE
C
ONTROL,
A
TLANTA

Bruce Evatt enjoyed his work with hemophiliacs, and his lifetime research into the bleeding disorder had long ago made him the resident expert on hemophilia at the Centers for Disease Control. The disorder, which had plagued generations of European royalty, was determined by the hereditary information of just one molecule. Orders for this molecule’s construction passed in genetic code from mother to son; the molecule determined whether or not the son’s blood would clot to stop bleeding. Hemophiliac sons lacked that ability, hence the name of their disorder, hemophilia, “love of blood.” Beyond the fascination with this molecule, Evatt found that hemophiliacs were simply a joy to work with. They were an intelligent, well-informed group who, in their lifetime, had experienced a scientific breakthrough that added decades to their typical life expectancy.

The invention of Factor VIII, a substance that, when injected, helped their blood to clot normally, had revolutionized thinking about longevity for America’s 20,000 hemophiliacs. Before Factor VIII, a hemophiliac could expect two, maybe three, decades of a life crowded with visits to the hospital for voluminous transfusions. All the transfusions could do, however, was replace lost blood. When injected into the blood, Factor VIII, a clotting factor concentrated from thousands of blood donors, gave the necessary components that allowed the hemophiliac’s blood to clot itself. The discovery gave the promise of a reasonably normal life span.

Bruce Evatt relished the optimism hemophiliacs shared. They organized, lobbied for research funding, and eagerly worked to improve their lot, not like people with cancer or chronic diseases who in despair just turned over and died.

Evatt’s regard for hemophiliacs is what made the phone call from Florida so troubling in the first days of 1982. A Miami physician was convinced that Factor VIII had killed his patient, an aging hemophiliac who had died of
Pneumocystis
a few months ago. Couldn’t the
Pneumocystis
protozoa have been transmitted in the clotting substance that his patient injected?

Evatt assured the doctor that the filtering process during Factor VIII preparation prevented the transmission of bacteria and protozoa. Of course, smaller microbes, like viruses, could make it through the filtering, giving hemophiliacs an inordinately high rate of, say, hepatitis B. But the
Pneumocystis
bug was big enough to be caught by the filters. Evatt’s careful speech exuded an aura of kindliness; it was difficult not to believe his reassurance.

Once off the phone, however, Evatt’s face folded downward toward the despairing thoughts he had been trying to hold off. Already, CDC staffers like Mary Guinan and Don Francis were predicting cases of gay pneumonia in hemophiliacs and blood transfusion recipients. This could not only be the first such case but it could provide some evidence that a virus was indeed responsible for the epidemic of immune deficiency among gay men. Evatt called the Food and Drug Administration, which has authority over blood products, to see whether they had heard of any similar problems. He also checked with the well-organized network of hemophiliac groups in case they had heard any reports of similar cases. None. Nor did Sandra Ford’s records turn up any pentamidine orders for hemophiliac patients.

The Florida case itself was problematical. Although a biopsy did confirm the
Pneumocystis,
the man’s death made it impossible to go for any more precise immune assay. Also, the doctors had made no autopsy, leaving the possibility that some undiagnosed tumor or lymph cancer had caused the immune suppression necessary for the pneumonia to take root.

Harold Jaffe of the Kaposi’s Sarcoma and Opportunistic Infections Task Force explained the problems to CDC Director Bill Foege. An old hand at epidemiology, Foege appreciated the gravity of the case, not only for hemophiliacs and blood transfusion recipients but also for opening the way to finally nailing down
something
as the cause of the epidemic, even if it were only a generic label like
virus.
However, he knew there were too many variables.

“If it’s real, there’ll be another one,” he told Jaffe. “And then we’ll know.”

Evatt told Sandy Ford to be alert for any pentamidine orders that might list hemophilia as an underlying medical condition, and the uneasy months of waiting began.

C
OPENHAGEN

Dr. Ib Bygbjerg had been back from Zaire for more than four years now, having returned in time to see his friend Grethe Rask die in late 1977. By early 1982, everybody in the hospital circuit was talking about the new diseases among gay men. Already, an American expert from the National Cancer Institute had been to Denmark to research the diseases. This must be something big; Danish scientists were rushing their first papers into print so they could beat out any NCI publication on the Aarhus studies.

As a tropical disease specialist, Bygbjerg had been called in late last year to treat his first case; before long, he was seeing them all, because the
Rigshospitalet
had already gained a reputation for its immunology work. As Bygbjerg, now thirty-six, studied the third Danish man to suffer from the strange gay syndrome, he was struck by a sense of déjà vu. This was so African. Here was a man whose intestines were being sucked dry by incorrigible amebic parasites, just like some African bushman. And then there’s this Kaposi’s sarcoma, another disease he had seen only in Africa. There was an eerie feeling too when Bygbjerg’s first KS patient died of
Pneumocystis,
and then another died of the same pneumonia. It was the protozoa Bygbjerg had wanted to study after the death of his friend Grethe, but his professors had dissuaded him with the assurance that there was no future in researching such a rare disease.

Instead, Bygbjerg had studied lymphocytes. He was glad he had, since the young men now falling ill with KS and PCP clearly had problems with their lymphocytes. The lymphocytes might even be a key to understanding what was causing their ailments, Bygbjerg thought.

But he couldn’t get the notion out of his head that what was killing these men was somehow related to what had killed Grethe Rask. He still considered himself sworn to that promise he had made at the time of her death, that before he died he would understand what had taken her life. The
Pneumocystis
was a link between what was happening now and what had happened then, during the Feast of the Hearts and on the barren Jutland heath.

Bygbjerg approached his department chairman for authorization to publish a medical journal story about Grethe’s death; maybe it was the piece to a larger puzzle that would help someone else see the full picture. For all they knew, it may have been in her body that some deadly new virus made its European debut.

Bygbjerg’s superiors laughed off the eager young scientist’s impulse to publish. You see tropical disease everywhere; you see Africa everywhere, they told him. Besides, they added, how could a disease of homosexual men with all those hundreds of sexual partners possibly be related to anything Grethe Rask might have? After all, as one friend pointed out later, the respected Dr. Rask was a lesbian who had never made any secret of her sexual orientation.

P
ARIS

The French study group, which Jacques Leibowitch and Willy Rozenbaum convened in early 1982, hadn’t set out to discover the cause of the mysterious and still-unchristened epidemic. At first, they simply wanted to track the new diseases as they made their splashy entrances in various hospitals. Rozenbaum already had approached Parisian gay doctors but found that they simply did not believe that the new maladies were anything but some new plot to drive them underground. “Let us die,” they told him. Rozenbaum decided to start his own epidemiological studies out of Claude-Bernard Hospital on the outskirts of Paris. He had set up his own hotline and would see as many patients as he could squeeze into a day. An unemployed epidemiologist looking for a gig, Jean Baptiste-Brunet, volunteered to follow the African cases in Paris. Leibowitch would keep in touch with other doctors around town.

What they had to offer, they figured, was a perspective unencumbered by America’s preoccupation with divining who was homosexual and who wasn’t. American scientists thought it odd to view the new epidemic as an African disease, but the French thought it unusual to view it as a homosexual disease. This was a disease that simply struck people, and it had to come from somewhere. The Parisian cases dated back three years before the first American patients, pointing toward an African genesis. Throughout northern Europe, evidence was rapidly accumulating for this theory. Belgian doctors also had been seeing
Pneumocystis
cases from such countries as Zaire and Uganda for four years.

January 6

C
ENTERS FOR
D
ISEASE
C
ONTROL
H
EPATITIS
L
ABORATORIES
, P
HOENIX

The horrible fever had swept seemingly from nowhere into the border region between Zaire and Sudan, on the fetid banks of the Ebola River. The disease was a blood-borne virus, wickedly spreading both through sexual intercourse, because infected lymphocytes were in victims’ semen, and through the sharing of needles in local bush-hospitals. The absence of modern precautions to protect doctors also spread the blood-borne disease among medical personnel through routes unimaginable in more civilized countries.

During this 1976 outbreak, local Danish doctors in the remote hospitals in Zaire, people like lb Bygbjerg and Grethe Rask, were impressed with the vigor with which the team from the World Health Organization (WHO) had moved to stamp out this deadly disease that became known as Ebola Fever. When it became obvious that the disease was spreading through autopsies and ritual contact with corpses during the funerary process, Dr. Don Francis, on loan to the World Health Organization from the CDC, had simply banned local rituals and unceremoniously burned the corpses. Infected survivors were removed from the community and quarantined until it was clear that they could no longer spread the fever. Within weeks, the disease disappeared as mysteriously as it had come. The tribespeople were furious that their millennia-old rituals had been forbidden by these arrogant young doctors from other continents. The wounded anger twisted their faces.

On this day, as he contemplated the epidemic of immune deficiency, Don Francis could not escape the memories of the horrible Ebola Fever outbreak. The memories became particularly sharp when Francis received the Wednesday morning phone call from Dr. Guy de The in Paris, another veteran of African epidemics.

Dr. de The had reviewed the latest research from Africa. Of course, there was the stuff about the benign Kaposi’s sarcoma, and Francis had already heard of the new, more virulent KS that had been reported first in Uganda in 1972. But there was more, de The said. In the western Nile district of Uganda, young men living together were getting not only the typical, easygoing Kaposi’s sarcoma, but the nasty kind, like that tearing through the bodies of American homosexuals. These Africans also suffered from the lymphadenopathy that marked the early stages of the American disease, de The said. There had to be some connection.

Of course, Francis thought. A new virus from Africa. It was where Bob Gallo at the National Cancer Institute figured his new retrovirus for Human T-cell Leukemia came from too. After all, HTLV only struck in the portions of Japan settled by Portuguese traders, who apparently had brought the microbe with them from Africa some 500 years ago. The African links reinforced Francis’s hypothesis about a transmissible agent.

The talk also imbued him with a greater sense of urgency. Already, he was flying to Atlanta every few weeks to consult with the floundering Kaposi’s Sarcoma and Opportunistic Infections Task Force. They had yet to be able to find any clue as to what caused this damn thing, and now their most important work, the case-control study, was hopelessly mired because they didn’t have the staff and money to tabulate the questionnaires. The National Cancer Institute didn’t seem terribly interested in the disease. The little bench work the cancer institute was doing focused on poppers and the sperm theory, the hypothesis that sperm deposited during sex was causing immune suppression. Although nitrite inhalants clearly did something to the body that wasn’t good, the task force had all but eliminated them as a cause for the new syndrome. After all, there was nothing new about them. The sperm theory, which so enchanted the National Cancer Institute, seemed downright ludicrous to Francis. Gay men had been getting injected with sperm for centuries without getting Kaposi’s sarcoma, not to mention the well-documented proclivity female heterosexuals hold for insemination.

Time is always the most formidable enemy in an epidemic, Francis thought. There wasn’t time to hope that the undirected interest of the National Cancer Institute or the National Institute for Allergy and Infectious Diseases would some day fall on these new diseases. To get the serious bench work going now, Francis was plotting to set up his own laboratories to do the lab work that normally fell to the NCI. He just had to figure out how to pirate the money to pay for it.

The problems wouldn’t end there, he knew, even if he nailed down what caused this disease. As he recalled the wounded faces in Sudan, he also knew that even greater difficulties lay ahead for control of the disease. Customs and rituals would have to be dramatically changed, and he knew from his hepatitis work in the gay community that customs involving sex were the most implacable behaviors to try to alter.