And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (17 page)

Back in Atlanta, Mary Guinan was assigned to review all those cases who claimed to be heterosexual. This was the most problematic element the case-control study had uncovered. Some patients apparently were not gay, though they did admit to being heroin users. Unfortunately, most of these addicts were dead by the time the CDC got to them, because they tended to suffer not from the slower homicide of KS but from the quick kill of
Pneumocystis.
Family members of dead patients were notoriously unreliable in confirming a victim’s heterosexuality, so intravenous drug use could not be called a risk until more direct interviews established it.

Although the growing evidence for a new infectious disease startled the Kaposi’s Sarcoma and Opportunistic Infections Task Force members, not everybody at the CDC was that excited over the cancer and pneumonia outbreaks. Many of the old hands were convinced that exposure to some toxic chemical had occurred, that it would not be repeated, and the disease would fade out as mysteriously as it had faded in. Maybe five years later, they’d figure out what had happened; for now, this was an interesting oddity that, ultimately, was not very important.

U
NIVERSITY OF
C
ALIFORNIA
,
S
AN
F
RANCISCO

Marc Conant was always scheming to get other UC specialists interested in the “gay plague,” as the gay press was ignominiously calling it, and a chance encounter at the melanoma clinic with Paul Volberding, the new cancer chief from San Francisco General Hospital, seemed particularly fortuitous. Conant saw in Volberding just the kind of doctor that would be needed in the difficult times ahead. Volberding was not trapped in some rigid specialization and was young enough not to be burdened by anti-gay biases that might cloud his scientific and medical judgments. When Volberding mentioned that he thought KS was a particularly interesting tumor, Conant suggested they visit a patient at UCSF, one that might prefigure the shape of things to come in the epidemic.

Simon Guzman tried to smile for the handsome young doctor who walked into his room with the familiar and reassuring form of Marc Conant. A native of Mexico, Simon did not speak English well, but Volberding easily recognized him as yet another nice young gay man who appeared to be on a rapid course to a painful and early death. There were, of course, the lesions of Kaposi’s sarcoma, but there was also an unrelenting diarrhea and herpes destroying the young man’s body. Other infections remained undiagnosed, Conant confided to Volberding. Something was ravaging the man’s gut, but they couldn’t figure out what.

Volberding recalled the helpless young man he had met on his first day at San Francisco General, and promised Conant that, yes, he too would sign on to work with these strange new diseases in the clinic Conant was organizing. Conant was reassured to have the resources of the city’s largest hospital behind him, as well as the nationally prominent UCSF Medical Center. Within weeks, he had appropriated several rooms used as nighttime sleeping quarters for interns, and the nation’s first Kaposi’s sarcoma clinic was established. Doctors from throughout northern California began referring their cases to Conant, ensuring the best treatment, study, and surveillance of the new disease. Conant would handle the dermatology and academic politicking, and Volberding would treat the patients at General.

Another young assistant professor at UCSF, Donald Abrams, also signed on at the hospital with his own agenda. Since his residency at local hospitals in the late 1970s, he had been studying the strange swelling of lymph nodes among gay patients. Already, one of these patients, a friend, had developed a lymph cancer, and another had come down with a strange meningitis. Abrams was convinced these lymph node problems were somehow related to the new diseases. In Abrams, Conant had found another doctor willing to set aside the paper writing and bench work of academic advancement in favor of trying to stop the new disease.

These early efforts, of course, were all conducted with free time pilfered from various specialists around the hilltop campus and financed in pan from the earnings of Conant’s private dermatological practice. But the federal money was coming, Conant told himself. It had been promised in Bethesda in September. Surely when they saw how serious this was, the government would pull out the stops.

November 1981

N
ATIONAL
C
ANCER
I
NSTITUTE
,
B
ETHESDA

Jim Goedert mentioned his nitrite inhalant study to Dr. Bob Biggar, a staffer at the Environmental Epidemiology Branch of the National Cancer Institute, housed in an inconspicuous office building a few miles away from the major NCI offices in the rolling hills of the National Institutes of Health campus. Goedert’s two KS patients piqued Biggar’s interest in the new epidemic. Biggar had spent years in Africa and recognized Kaposi’s sarcoma as one of the most widespread cancers on that continent. Still, he doubted the theory of poppers as the cause. There was nothing new about nitrite inhalant use in the gay community. Besides, a disease caused by a social phenomenon followed a gradual curve, increasing slowly as the behavior trend caught on. New reports of KS and PCP were coming into the CDC on an exponential curve. That was the way infectious diseases spread, increasing dramatically as the new infectious agent worked its way through the population. There had to be another way to go after this, Biggar thought, and as he plotted a course for study, his thoughts drifted toward Denmark.

Four years
of
studying the relationship between the Epstein-Barr virus and Burkitt’s lymphoma in the jungle of Ghana for the NCI’s Environmental Epidemiology Branch had convinced him that infectious agents could cause cancer. Any research on this hypothesis in an American gay urban center, however, would be tainted by the fact that some of the gay men already were infected with the disease-causing agent and one wouldn’t be able to accurately tell the infected from the uninfected. Biggar figured he had to go to some place where there were gay men but where the disease had not yet struck.

Rochester, New York, at first seemed like a promising city, but it proved to be too close to New York City, the epicenter of the new disease. A more perfect research site occurred to him suddenly one day, and he quickly approached his superiors about requisitioning a plane ticket to Denmark. Aarhus, the largest city north of the fjord in Jutland, offered a fairly open gay population who would most likely cooperate, and a geographic location remote from the gay cancer centers of the United States. It also was home to an important medical center. With doctors from the medical center and uninfected gay men, Biggar could launch a study to track this new disease and fathom its seemingly unfathomable mysteries. The work would also cost next to nothing, with expenses mainly going for the plane fare and his salary.

Biggar was busily preparing the study’s protocol when he received word that the National Cancer Institute chiefs would not pay for his plane ticket. Money was tight, Biggar was told privately. Studying gay cancer was not a priority.

S
T
. F
RANCIS
H
OSPITAL
,
S
AN
F
RANCISCO

The last time Jim Groundwater saw Ken Home, he couldn’t help but think back to the angry young man who had stepped into his downtown office exactly one year before. The Ken Home lying sullenly in the dark room in St. Francis Hospital no longer had the vivacity that had undoubtedly helped keep him alive through the debilitating bouts with
Pneumocystis,
cryptococcal meningitis, and widespread cytomegaloviral infections. Even though Ken had been a pest, Groundwater had come to respect his spirit and the courage with which he faced his health horrors, always somehow convincing himself that he would pull through, be cured, and get back to days at the BART station and nights at the baths.

Now, the fight was out of Ken’s voice, Groundwater noted. Ken seemed reconciled to the fact that he was going to die. His once-toned dancer’s body had shrunk to 122 pounds, and his fever constantly ran at 102 degrees. He was blind now too, from the CMV herpes infections that had wasted his nervous system. His mind also seemed to be going, like that of an old person suffering from dementia. But, of course, young people don’t get dementia. The staff assumed that his failing mental acuity stemmed from medication or from the sheer physical stress of fighting disease after disease for the past year.

Never before had Groundwater seen anybody so consumed by any disease. He gave Ken Home his usual pep talk that November morning about hanging in there, but as he left Ken’s room he knew that death would come as a relief to that tortured body.

On November 26, after being taken off a ventilator, Ken suffered respiratory arrest. He was resuscitated and put back on the wheezing contraption that breathes for patients who are no longer able to draw their own breath. On a late November night, while a heavy bank of storm clouds shoved past the San Francisco skyline on a north wind, Ken’s breath again grew heavy and pained.

At 1 A.M. on November 30, 1981, George Kenneth Home, Jr., gasped one last tortured breath and lapsed into the perfect darkness.

Jim Groundwater wasn’t surprised when he learned Ken Home had died. The autopsy on his battered body that day, however, revealed that Ken had withstood infections far beyond what his doctors had imagined.

The primary cause of death was listed as cryptococcal pneumonia, which was a consequence of his Kaposi’s sarcoma and
Pneumocystis carinii
pneumonia. Those, however, were only the obvious diseases. The KS lesions, it turned out, covered not only his skin but also his lungs, bronchi, spleen, bladder, lymph nodes, mouth, and adrenal glands. His eyes were infected not only with cytomegalovirus but also with
Cryptococcus
and the
Pneumocystis
protozoa. It was the first time the pathologist could recall seeing the protozoa infect a person’s eye.

Ken’s mother claimed his body from the hospital the day after he died. By the afternoon, Ken’s remains were cremated and tucked into a small urn.

His Kaposi’s sarcoma had led to the discovery in San Francisco of the epidemic that would later be called Acquired Immune Deficiency Syndrome. He had been the first KS case in the country reported to a disbelieving Centers for Disease Control just eight months before. Now, he was one of eighteen such stricken people in San Francisco and the fourth man in the city to die in the epidemic, the seventy-fourth to die in the United States. There would be many, many more.

December 1

C
ENTERS FOR
D
ISEASE
C
ONTROL
, A
TLANTA

On the day that Ken Home’s body was cremated, Jim Curran dictated a memo to CDC Director William Foege. Curran was politically savvy enough to know that this was not a good time to be asking for more money, what with the ax falling on health budgets throughout the country, but he was also convinced that the new epidemic presented the potential of a serious health threat if it wasn’t tackled.

Everybody in the Kaposi’s Sarcoma and Opportunistic Infections Task Force had figured that by now reporters would be crawling all over this story. Legionnaire’s disease and toxic shock syndrome had, by this stage in their respective epidemics, warranted almost daily front-page treatment, which in turn engendered the interest of members of Congress, who tickled loose more money for research. Yet newspapers and television broadcasts rarely mentioned a word about the new epidemic. Instead, budgetary warfare had to be waged through discreet internal memos. In November, minutes of the task force meeting forwarded to CDC brass mentioned that the meetings repeatedly shifted, as one memo put it, to “discussions of the impact of budget cuts…on its own function,” and attempts “to find ways to minimize disruption of the investigation if special funds were not forthcoming.”

Now Jim Curran had finished his modest six-month budget proposal of $833,800 for the task force’s next year of work. Foege had promised to argue for the supplemental funding, which represented only a fraction of a percent of the Public Health Service budget. Curran waited eagerly for a reply to his request.

And he waited, and he waited.

December 1981

P
ARIS

With a disposition tilted toward permanent agitation, Dr. Jacques Leibowitch lapsed into near-rapturous excitement long before completing Michael Gottlieb’s article in the
New England Journal of Medicine
about the cases of
Pneumocystis carinii
pneumonia in gay men, and Alvin Friedman-Kien’s piece in the same issue about Kaposi’s sarcoma. He immediately recalled the stocky Portuguese cab driver whom Dr. Willy Rozenbaum had sent him three years ago. He too suffered from this pneumonia and he too was already dead, for a year now. Leibowitch and Rozenbaum were not close friends. A detached observer might note that they were too similar to be friendly, both with their well-toned, muscular bodies, movie-star good looks, and a professional exuberance that was altogether foreign to the staid medical profession. Both also exuded a sensual charisma, and Leibowitch preferred being the only charismatic guy in the room. Nevertheless, he couldn’t restrain himself from calling Rozenbaum about the Gottlieb article.

“The epidemic—the cab driver,” enthused the thirty-nine-year-old immunologist. “It’s already been here. For three years.”

“Yes,” said Rozenbaum. “I have three other patients in the hospital now.”

Rozenbaum told him of the two gay men who had come to him in the past months with the diseases, as well as two women, a Zairian and a Frenchwoman who had lived in Africa. Whatever these diseases were, they were not simply homosexual maladies, and there had to be some link with Africa, Rozenbaum said.

Given his infectious disease background, Rozenbaum wanted to start an epidemiological study of the gay men who were coming down with this to try to understand some patterns. He didn’t know how kindly his hospital administration would take to studying homosexuals, but he sensed that this was big and it would only get bigger.

On a hunch, Leibowitch called his sister, a professor of dermatology at another Paris hospital. Sure enough, she was treating two more gay men with Kaposi’s sarcoma. Leibowitch talked to the two men and started reading everything from the United States about the epidemic. He was taken aback at how little had been written in the popular press even though there were already so many dead and dying from this mysterious phenomenon. He was also curious to see that it was promoted as a homosexual disease.

How very American, he thought, to look at a disease as homosexual or heterosexual, as if viruses had the intelligence to choose between different inclinations of human behavior. Those Americans are simply obsessed by sex. He had no doubt it was some kind of virus. The African connection immediately suggested a viral agent; Africa was where new diseases tended to germinate. It certainly was not the poppers the Americans kept talking about. He had never heard of poppers, and certainly his cab driver had never heard of poppers nor had those two women from Zaire. If it was something that was already in the United States, France, and Africa, he realized, this was an event that could have global impact.

A
LBERT
E
INSTEIN
C
OLLEGE OF
M
EDICINE
,
B
RONX
, N
EW
Y
ORK

Dr. Arye Rubinstein’s soft voice was infused with a thick Israeli accent that the poor black kids from the Bronx, who made up the bulk of his patients in the immunology ward, found both exotic and reassuring. This wasn’t the thick guttural English spoken among the sprawling poor tenements of a neighborhood that had for years been the very personification of American poverty. Somehow, Rubinstein sounded the way a doctor was supposed to sound. As chief of Albert Einstein’s medical college Division of Allergy and Immunology, Rubinstein had seen all sorts of immune disorders among these impoverished kids, but there had been something new now for two years. He had no doubts that these kids, raised in the depths of Bronx poverty, were suffering from the same immunology problems plaguing trendy homosexual men in the chic neighborhoods of Manhattan.

It had started in 1979, he could see now, when an anxious mother brought in her three-month-old. Blood tests indicated that this child’s immune deficiency clearly was different from the congenital immune problems that made up the brunt of Rubinstein’s work. It had an entirely different profile, with a marked decrease of T-helper cells and other blood irregularities that one didn’t see in congenital cases. For the next two years, baffled clinicians from the Bronx public hospitals started calling Rubinstein more often about kids with swollen lymph nodes and an apparent inability to fight off even the most common and benign infections. A number of them, the doctors noted, had mothers who were drug addicts.

The clincher walked into Rubinstein’s office in late 1981. The mother, one of the thousands of drug addicts who used the nearby Jacobi Hospital, had swollen lymph nodes and nagging minor infections, clear indications of immune deficiency. Now, her child presented the same symptoms. There was no congenital immune deficiency in which both the mother and child had the same symptoms, Rubinstein knew. He thoroughly researched the literature. Maybe it was caused by cytomegalovirus and Epstein-Barr virus, but those infections, he learned, would behave differently. With some trepidation, he wrote on their medical charts the diagnosis he knew was correct—immune deficiency. Whatever the homosexuals had that was giving them Kaposi’s sarcoma and
Pneumocystis,
it was also spreading among drug addicts and, most tragically, their children.

The doctors tending the mother and child crossed Rubinstein’s diagnosis off their charts.

Although Rubinstein was an eminent pediatric immunologist, he could not get anyone else to believe his unlikely analysis. He began bringing up the cases at city immunology meetings. This is something we need to look out for, he warned. The other doctors assured him it was certainly just some new kind of congenital cytomegalovirus infection. At an immunological meeting at Cold Spring Harbor, Rubinstein presented more data, proving that what he was seeing couldn’t be the work of the CMV herpes virus. This was something new, spreading not just among the elite homosexuals but in the slums of the Bronx. No, the scientists told him. Gay pneumonia and gay cancer were diseases of homosexual men.

In December, Rubinstein wrote up an abstract to present at a conference of the American Academy of Pediatrics. In his opinion, the evidence was becoming overwhelming. He had five black infants who had been thoroughly worked up. Some had
Pneumocystis
pneumonia; they all had the same T-cell patterns common to gay pneumonia victims. At least three of the kids were the children of promiscuous drug users.

The implications were clear to Rubinstein, and they needed to be shouted from the rooftops. The fact that children contracted the disease indicated that it was not from poppers or anything particular to the homosexual life-style, but that it was the effect of a new virus that mothers were transmitting to their children, probably through the placenta. Society needed to be steeled not only for a new infectious disease among gay men but also among drug addicts who could spread it to their children.

Such thinking, however, was simply too farfetched for a scientific community that, when it thought about gay cancer and gay pneumonia at all, was quite happy to keep the problems just that: gay. The academy would not accept Rubinstein’s abstract for presentation at the conference, and among immunologists, word quietly circulated that the Israeli researcher had gone a little batty.

S
AN
F
RANCISCO
D
EPARTMENT OF
P
UBLIC
H
EALTH

In her quiet, methodical way, Dr. Selma Dritz spent the morning rummaging through the basement of the old public health building before she came across the blackboard that would serve her purposes. It couldn’t be too big or it wouldn’t fit on the wall of her tiny third-floor cubbyhole at the Bureau of Communicable Disease Control. Still, it had to be big enough to hold all the names. The idea had struck her as she started noting the patterns during the long interviews she helped the CDC conduct for their case-control study. One roommate would come down with Kaposi’s sarcoma and another would contract a fatal case of cytomegalovirus run wild. The latter death might not be attributed to the new epidemic, but Dritz had no doubt that it had something to do with immune defects she was seeing in gay men, so she meticulously noted the interpersonal links both in her neat black notebook and on the note cards she had started keeping in an old shoe box on her desk.

By December, there were enough links to warrant having a blackboard on her office wall, and there, with arrows between circles marked PCP, KS, and CMV, she saw the pattern emerge. There were lovers and roommates, friends and friends of friends, and all the arrows pointed toward one discomforting conclusion. Although it lacked the hard proof that elevates theory to fact, it looked to Dritz like this gay cancer was something infectious and that it was spread through sex.

The time may be coming for public health alerts and official warnings, Dritz thought. Like scientists and public health officials throughout the country, however, she waited for more evidence from the CDC’s newly completed case-control study. Thousands of lives depended on it.

Other troubling conclusions were being drawn in various examining rooms in New York and San Francisco in the last weeks of 1981, though they wouldn’t make much sense until later. At the UCSF Kaposi’s Sarcoma Clinic, Dr. Donald Abrams had begun his own study of patients with swollen lymph nodes who were coming in with greater frequency. This lymphadenopathy was related to gay cancer, he felt, though it might be some early stage or, perhaps, some milder form of the immune deficiency. He also started studying steady sexual partners of the people with gay cancer and pneumonia, figuring they might give some clue as to whether this was an infectious disease and, if so, how long it needed to incubate before bursting forth in one of its deadly manifestations. There wasn’t any money for these studies, but he managed to pilfer help here and there and add the time to his already harried schedule. The National Cancer Institute had promised grants, he knew; he could hold out until then.

C
ENTERS FOR
D
ISEASE
C
ONTROL
,
A
TLANTA

The anecdote was precisely the story Dr. Jim Curran had feared he might hear, even though it was the kind of information that interviews with 75 percent of the living “gay plague” victims were supposed to engender: One man lives contentedly with his longtime lover in a small, remote town. He doesn’t live in the fast lane of big-city gay life; he doesn’t use poppers; he’s dying. His lover, it turns out, is a traveling salesman who is generally faithful, except when he gets to New York, where he screws his brains out in the gay bathhouses. Shortly after his monogamous lover gets sick, the salesman gets sick too.

To prove an infectious disease, Curran knew, one had to establish Koch’s postulate. According to this century-old paradigm, you must take an infectious agent from one animal, put it into another, who becomes ill, and then take the infectious agent from the second and inject it into still a third subject, who becomes ill with the same disease. That’s the scientific way of proving a disease is infectious. The anecdote of the salesman and his faithful lover did not meet all the niceties of Koch’s postulate, but, in an epidemiological sort of way, it added more weight to the CDC’s KSOI Task Force view that gay cancer and gay pneumonia were part of a new infectious disease.

By December, the official statistics counted 152 cases in fifteen states. Including the likely cases that still needed follow-up, the toll was closer to 180, and climbing fast. Only one of the 152 cases was a woman, an intravenous drug user. Dr. Mary Guinan, who handled all the suspected heterosexual cases, was convinced that drug addicts were the next major pool of immune deficiency cases. Problems remained in saying this officially, however. The addicts tended to be dead by the time they were reported to the CDC. Health officials outside the task force often reported them as homosexual, being strangely reluctant to shed the notion that this was a gay disease; all these junkies would somehow turn out to be gay in the end, they said.

Guinan, however, wasn’t convinced. If the diseases could be spread through sharing needles, there were vast public health implications not only for the United States but worldwide. Cases among addicts, Guinan thought, would certainly presage infection of hemophiliacs and transmission of the disease through blood transfusions. Moreover, such a route of contagion, so similar to that of hepatitis B, would give public health authorities a reason to issue guidelines so gay men could reduce the chance of contracting these singularly brutal diseases.

Like everyone in the task force, Guinan hoped the final tabulations of the lengthy case-control questions would provide some solid answers. But she also knew that the answers would not be forthcoming. Although the task force had been able to move quickly for the past six months by pirating other CDC budgets and diverting personnel, the lack of resources finally bogged down research at its most crucial juncture.