THE CLAP DOCTOR
By Bruce Nussbaum
Good Intentions 1990
He was known as the "clap doctor" and he carried the moniker with both pride and shame. Joseph Sonnabend was proud of his practice in the Village - New York's Greenwich Village. Sonnabend saw his practice as the kind that had long ago disappeared from medicine: a doctor with an actual kinship with his patients. They were gay. So was he. They were outsiders. He was a South African expatriate Jew, no less. They suffered from a strange, truly bizarre stream of infectious diseases. He was one of the few who could treat them.
A boyish barrel-cheated man, almost shy, he stood with his arms straight down at his sides, head bent. With a heavy salt-and-pepper beard, bushy eyebrows, a full head of curly black hair, and a big nose, his face made him resemble nothing less than a kindly Caliban. Sonnabend had the softest of voices. It drew people toward him, and, once near, they stayed to listen to what he had to say. Yet that same voice had enormous projection in anger or excitement, especially when he was talking about science and its shortcomings. Later it would reverberate with talk of AIDS.
Sonnabend's manner triggered something in his patients that was sometimes described as two steps away from love. Seeing his potbelly hanging over pants that often failed to hide his underwear, they felt a need to protect him from a hostile world. He wore his personal dishevelment as a badge of unyielding, uncompromising principle, but instead it gave him the unmistakable mien of tragedy. To his patients, Joe Sonnabend was the quintessential tragic hero.
Sonnabend wasn't alone in building a special practice. At that time, other doctors in New York, San Francisco, and Los Angeles were building practices with intensely close patient-doctor ties. What they didn't know was that within two or three years, when the AIDS virus presented itself full-blown, these networks would prove lifesaving to the lucky few who belonged to them. They were the foundation for a new, alternative medical system about to arise in reaction to the failures of the government's biomedical establishment.
In the mid-seventies, Sonnabend's office was crowded with people suffering from syphilis and gonorrhea of the penis, the mouth, the anus. Chlamydia was also rampant in the gay community. But there was a lot more than the clap walking through Sonnabend's door. Hepatitis B was almost epidemic, and even tuberculosis was making a comeback. Oral and anal herpes were so common they barely were worth a mention to those infected. Sonnabend thought the gay population, at least the slice of it he was seeing in the Village, was clearly sicker, with stranger diseases, than the populace at large.
In the late seventies, a new wave of disease hit his community parasites. Amebiasis, giardia lamblia, shigellosis, and cryptosporidium, a parasite that usually inhabits the bowels of sheep. These enteric diseases are caused when certain organisms get into peoples, gastrointestinal tracts. How they were getting there was no mystery. The parasites are present in fecal matter. Anal intercourse increases the chances of the parasites infecting one or both sex partners. But the growing popularity of rimming, or oral-anal intercourse, in the late seventies provided an almost perfect vector for these parasites to enter parts of the body unaccustomed to their presence.
This second wave of sexually transmitted disease terrified Sonnabend. Dozens of patients were coming into his office with infection after infection. His earlier research had shown him how fragile the body's immune system is. He knew that these venereal diseases were putting tremendous stress on the immune systems of his patients. As their immune systems began to break down under the onslaught of one sexually transmitted disease after another, their bodies were exposed to all kinds of horrors. They were becoming defenseless against the common bacteria, viruses, and parasites that normally inhabit our bodies but are kept in check. It was beginning to happen right before his eyes.
Sonnabend had taken a long and tortured personal and professional voyage to get to Greenwich Village. His mother was a physician, his father a university professor. Sonnabend originally related more to his father's academic calling, preferring the realm of theoretical science to the nitty gritty of dealing with sick people.
While in 1956 he had received an M.D. from the University of Witwatersrand in Johannesburg, South Africa, Sonnabend was more interested in medical research than in medicine. He specialized in infectious diseases at the Royal College of Physicians of Edinburgh, Scotland. In the sixties he did work at the prestigious international Institute for Medical Research in London.
At one point, Sonnabend's father emigrated to Israel. When Sonnabend visited, he always made a point of stopping off at the Weizmann Institute to check up on their latest research.
What he was most interested in was interferon. At the IIMR in London, Sonnabend worked under Alick Isaacs, the man who discovered interferon in 1957. Scientists at the Weizmann were also running experiments on this substance, which occurs naturally in the body.
Sonnabend was good in the lab. Really good. His sloppy demeanor, his hesitant, shy personality and almost muttering personal speaking style disappeared once the man walked into a laboratory. Transformed, Sonnabend became a decisive, commanding force. He was clearly in control among the test tubes, chemicals, and precise machines. Indeed, Sonnabend appeared to take on many of the characteristics of these precise machines.
Interferon has always had a checkered history. Isaacs and his disciples claimed that the substance had powerful qualities. It was said to work against cancer, for example. The scientific establishment was skeptical, unwilling to accept interferon as a legitimate substance appropriate for experimentation. Researchers on interferon have tended to be relegated to the wings of the science stage.
Sonnabend made one of the most important discoveries in the field. While he was at the IIMR, he showed for the first time how interferon had antiviral properties. It worked against viruses. This was the first discovery that proved that interferon was a critical part of the body's immune system. It indicated how the substance might play a significant role against virus induced diseases. His research gave some weight and importance to interferon, giving it a semblance of legitimacy within the larger scientific community .
In the early seventies, Sonnabend came to the States as an associate professor of microbiology at the Mt. Sinai School of Medicine in New York City. He was on a grant that paid him to continue his work on interferon.
Despite his discovery of interferon's antiviral properties, however, the field continued to be out of the scientific mainstream. Sonnabend's grant was not renewed and he was forced to return to London. Sonnabend liked the United States, or at least New York, and was unhappy at having to leave.
Back in London, morose over losing his grant and angry at the way interferon research was treated by the science establishment, Sonnabend lost hope of ever doing work in the United States again. Then a miracle! He received a fat tax return from the IRS. It was totally unexpected, but it paid for an airplane ticket and another crack at America.
This time he got a job at Downstate Medical Center in Brooklyn, part of Kings County Hospital, a public hospital. It was not a plum appointment. The hospital was overcrowded and dirty. "it was clear that nobody wanted to work in that place", he says.
Downstate didn't pay very much, so Sonnabend moonlighted at the New York City Department of Health. His interest in infectious diseases led him to the Bureau of VD Control. There Sonnabend was "discovered." Because he was not only a doctor but a researcher, in 1978 Sonnabend was made director of VD control. As director, Sonnabend came into contact with the Centers for Disease Control in Atlanta. He also established ties with New York's gay community by doing volunteer work at a gay clinic for sexually transmitted diseases.
Sonnabend had never really been comfortable in the Kings County department of medicine, surrounded by doctors whose main interest in life appeared to be money and golf. They were all high-income earners interested in the things that money could buy-stocks, real estate investments, Porsches, beach houses in the Hamptons. None of them did volunteer work at public VD clinics.
The medical department chairman who had hired Sonnabend was replaced by a new doctor, and the chemistry between them was not right; in fact, it was poisonous. "He was really like a businessman" says Sonnabend. "For the first time I was in a department of medicine where I really wasn't doing too well." The new chairman didn't renew his contract.
In his forties, Sonnabend was out of work. Without his hospital affiliation, he couldn't continue at the Health Department. He could have returned once more to London to work at the IIMR, but running back twice after failing in America was not appealing. Funding for interferon experiments was hard to come by in the United States, so working solely in a research lab wasn't an option.
There was one thing that Sonnabend hadn't done, one thing for which he was eminently qualified. Being a doctor. A simple community physician. It wouldn't be easy. He had always worked in academic settings where he never had any contact with sick people. Disease had always been dealt with only in slides and experiments.
But Sonnabend was, by this time, one of the world's top experts on sexually transmitted diseases (STDs). There was an epidemic of VD spreading through the gay community, and his work at the gay clinic had given him good community contacts. So in 1978 he rented an office in Greenwich Village, hung out a shingle, and went to work. He didn't know much about colds, flu's, or chicken pox, but ask him about treating gonorrhea and Sonnabend knew all the answers.
Until the fall of 1980. That's when Sonnabend ran out of answers. lt. happened the day Sonnabend suddenly realized that something new and deadly was stalking his patients. He looked down at the young man on his examining table and became profoundly afraid. His patient was the latest in a series of people he had seen in recent weeks with swollen lymph nodes, fevers, and anemia. The man had cytomegalovirus, a herpes virus that was becoming so widespread that it had a nickname-CMV. People were getting CMV in different parts of the body. Many were coming down with CMV retinitis and were going blind.
Sonnabend ran blood tests and found that his patient's immune system was severely suppressed. The T-4 cells, which normally sweep the blood clear of disease invaders, were down to a count of 100 per cubic millimeter of blood. If this man had been healthy, that T-4 count would be in the 800-to-1,200 range.
Earlier, Sonnabend had seen infections with Epstein-Barr virus. It too was associated with a weakened immune system. But now something new was happening. Sonnabend had no idea exactly what was behind this wave of disease, but he suspected it had to do with what he had begun to fear most-that the immune systems of the people in his community were being decimated.
Sonnabend had set up a small research lab at Beth Israel. He worked at the lab in the morning and saw his patients in the afternoon. Sonnabend prescribed antibiotics for his patients with the new diseases, but, unlike those with parasites, bacterial infections, or funguses, few of these people were getting better.
Six months later, in early 1981, Sonnabend saw a patient and for the first time knew he was looking at a separate, as yet undefined entity-a new disease that would come to be called AIDS. The young man had been in his office before with anemia, parasites, and pneumonia. There was fungus on his fingers, and he'd had diarrhea. Sonnabend gave him the usual round of antibiotics. Nothing appeared to work.
Sonnabend saw the young man several times. In one visit he noticed that the patient had an unusual infection. It was Pneumocystis carinii pneumonia, usually found in young children with leukemia whose chemotherapy suppressed their immune systems. Adults undergoing organ transplants also got PCP because of the immune-suppressing drugs used to prevent organ rejection. But this young man didn't fit either category. He had PCP and Sonnabend didn't know why.
Sonnabend immediately sent the man to the hospital. In the course of investigating his pneumonia and his anemia, the doctors discovered that the patient had Kaposi's sarcoma inside his stomach. It soon appeared on his skin as well.
This was quite bizarre. KS was a rare skin cancer, even rarer than PCP. First reported in the late nineteenth century, only a few hundred cases had ever been documented, and they all involved Italian or Jewish men in their fifties or sixties. Very few ever died of the flat, purple lesions on their skin. There were a few reports of KS in Africa, among the Bantu. There KS proved to be more widespread and more deadly.
But Sonnabend's patient wasn't an older Italian or Jewish man, nor was he an African. He was a gay man in his early twenties. Sonnabend asked around and discovered that thirty-six cases of this rare cancer had been reported within the past few months. All were men, all were white, and all were gay. Sonnabend's patient was number thirty-seven. He died several days after being admitted to the hospital. He died an agonizing, painful death. The New York Native, a newspaper for the gay community, began carrying regular feature stories on "gay cancer."
The first published report on AIDS was on page 2 of a booklet mailed to thousands of hospitals and public health institutions every week. Anybody involved with infectious diseases and public health receives the Morbidity and Mortality Weekly Report of the Centers for Disease Control. The MMWR dated June 5, 1981, contained a breakdown of the new cases of nearly every infectious disease on a state-by-state basis.
The article signed by Drs. Michael Gottlieb and Joel Weisman, detailed four strange new cases of Pneumocystis carinii pneumonia in Los Angeles. It noted the links between PCP and CMV. It read simply, "Pneumocystis pneumonia-Los Angeles." There was no reference to gays in the title, perhaps to avoid offending homophobes or gays or both.
The text, however, referred to the fact the patients were homosexual and suggested that the gay lifestyle might play a role in the spread of Pneumocystis.
Joe Sonnabend read the MMWR and knew that what he had been seeing was not a local phenomenon. Like a few of his patients, the disease was bicoastal.
In October, Sonnabend visited an old friend, Mathilde Krim, in her lab at the Memorial Sloan-Kettering Institute for Cancer Research. Sonnabend had first met Krim thirty years earlier at the Weizmann Institute. Krim was there with her first husband, David Danon, whom she'd met when she was studying biology at the University of Geneva.
Krim was as much a world traveler as Sonnabend. Born in Italy to an Austrian mother and a Swiss father, Krim had moved with her family to Switzerland when she was a child. At the university, she met a group from what was then Palestine. Krim converted to Judaism, joined the militant Zionist underground, the Irgun, and smuggled guns to them. After independence was won she received her Ph.D. and moved to Israel with her husband to work at the Weizmann.
Krim stood out among the scientists at the Weizmann. She was then a young beauty with lustrous blond hair, high cheekbones, and bone-china white skin. She had a low voice and a middle European accent that made her sound like an intellectual Zsa Zsa Gabor.
Even then she had "bad-girl" eyes, mischievous blue-green eyes that challenged authority. They were the only telltale hint of the rebellious nature of this serious scientist from a very bourgeois Swiss family. In those eyes you could see the runaway daughter who left Switzerland after World War II to fight for the Jews in the Middle East. You could see the convert to another religion. It was no accident that Krim gravitated toward research in interferon. She was a scientist who chose to study a subject on the fringe of mainstream science. Sonnabend and Krim talked briefly then, decades ago, in Israel. He would remember it in sharper detail than she.
In 1956, after her first marriage ended, Krim gave a tour of the Weizmann to Arthur B. Krim, founder of Orion Pictures, and soon married him and moved to New York. Arthur Krim moves in powerful political and social circles. He has served as the financial chairman of the Democratic Party and advised Presidents Kennedy, Johnson, and Carter. And, of course, he knows all the big movie stars and movie-business moguls.
Sonnabend and Krim kept in touch over the years through their mutual interest in interferon. They were part of an "interferon mafia" of scientists around the world. She was very impressed with Sonnabend's work on interferon's antiviral properties.
Krim spent the seventies at Sloan-Kettering working to prove that interferon was an effective therapy against cancer. She personally financed a number of international interferon conferences to popularize and legitimize research into the substance and to overcome mainstream opposition. At one point, Krim was known as the "interferon Queen."
Unfortunately, she was unable to prove at that time that interferon was an effective anticancer treatment. There were many signs that it would work against rare leukemia's and other diseases, but nothing definitive.
Krim remembers that October meeting with Sonnabend in her lab at Sloan-Kettering quite clearly. "Joe was the first physician in New York to get seriously alarmed by what appeared to be cases of young people who had suddenly developed a violent immunological reaction to something."
Sonnabend told her that it was strange, but all the people who showed the symptoms were young gay men. "Sonnabend [pronounced Zonnabent in her Swiss-German accent] had no idea what the etiological agent was to which they were responding. Neither did I, of course." But Sonnabend did suggest he might have stumbled across the epidemic of the decade. He told her that this was an irresistible opportunity. Although Sonnabend the doctor realized it was a horror of grotesque proportions, Sonnabend the scientist told Krim that it "was a most wonderful, incredible event." Krim agreed.
Before 1981 was over, Sonnabend and Krim began a series of experiments in her lab at Sloan-Kettering. Both had spent their most productive research years studying interferon. They couldn't give up the idea that the substance played a significant role in disease. They hypothesized that they would find circulating interferon in patients with CMV, Epstein-Barr (EBV), or any number of other infections that were associated with a breakdown in the immune system. It wasn't hard to find. Later, when the AIDS virus was discovered, it turned out that increased levels of interferon were a good prognostic indicator of the disease. But like so much of interferon research, this discovery was ignored by mainstream scientists.
The two were a perfect match-the eccentric genius and the powerful socialite Ph.D. By that time, though, interferon was going nowhere for Krim. AIDS would soon be her cause.
Joe Sonnabend grew increasingly convinced that sexually transmitted diseases were doing tremendous harm to his patients. He set out to prove it in one of the earliest AIDS experiments in the country. He turned to his practice for volunteers. Virtually every patient wanted to participate and help.
Sonnabend then turned to one of his old "interferon mafia" buddies for help in showing the relationship between STDs and body immunity. Dr. David Purtilo at the University of Nebraska was one of the first scientists to do work in human T-4 cell research. He pioneered in the technique of counting T cells and relating the count to immune function. Purtilo showed that as the T-4 count fell, so did the body's immunity.
Sonnabend drew blood from thirty gay patients: ten were in monogamous relationships with their male lovers; ten dated around; and ten were "sluts" according to Michael Callen, one of his patients who participated. "I was one of the sluts", he says. People in this group had many sexual partners, hundreds if not thousands of them. As a result they also had the highest number of sexually transmitted diseases.
Sonnabend sent the blood samples off to Purtilo at the University of Nebraska. Within a month he received the results. Sonnabend was astounded at the closeness of the correlation between STDs and immunity. The people with monogamous relationships had normal T-4 cell counts. All the "gluts" had extremely low counts; they had the most suppressed immune systems.
It was extraordinary research: clear, simple, and the first of its kind. Sonnabend showed that the immune system of an entire community, the gay community, was under severe stress because of constant attack by syphilis gonorrhea, chlamydia, and other STDs. He showed that these diseases were wearing down an entire group's protection against infection.
Sonnabend published his results in the Lancet in early 1982. The last sentence in his piece said that promiscuity was suppressing the immune system. Just before the article came out, he turned to one of his patients and told him: "If you don't stop fucking around, you'll die." Sonnabend told him that he had almost no T-4 cells left. He was dangerously immunosuppressed. Sonnabend said that he had the same blood parameters as his patients who came down with Pneumocystis carinii pneumonia and Kaposi's sarcoma.
Then Sonnabend wrote the same warning in the New York Native. He said that the fast-lane gay lifestyle was killing people. He said they were going to have to stop being so promiscuous, that having hundreds if not thousands of sex partners was making them very sick and very vulnerable.
It was a message the gay community didn't want to hear at that time. After fighting for the freedom to be themselves, they didn't want to hear about restraint. Indeed, for a large part of the male gay community, freedom was not simply the ability to love other men without legal or social restraint; it was defined in terms of sexual promiscuity. For many, to be young and gay and liberated in New York City meant having anonymous sex with two, three, four partners a night, night after night, year after year, STD after STD.
Sonnabend began to preach to his practice. He told them to stop screwing dozens of men every week; to stop the crazy stuff, the fisting, the rimming, all the oral-anal sexual practices. He advocated condoms long before "safe sex" became fashionable. Condoms would reduce most of the venereal diseases afflicting his patients, both the old-fashioned ones and this new epidemic.
Sonnabend's Native article and his personal message to his patients provoked a tremendous storm of protest. He was perceived as agreeing with the most right-wing, religious moralizers of the new Reagan era in America, of blaming this new "gay disease" this "gay cancer" on the gays themselves. The victim was to blame, or at least the victim's lifestyle. In truth, Sonnabend was telling them they had some responsibility for this new epidemic.
For his efforts, Sonnabend was denounced by virtually all of the gay community's leaders. He was vilified in the community itself. It seemed that everyone, except perhaps the thirty patients who participated in the "sluts" research, was angry with Sonnabend. He couldn't quite understand it. It was simply logic. He had done an experiment and proved a point. He was trying to save their lives. Not only was the uproar baffling, it caused Sonnabend tremendous pain. His own community was turning on him. It was a betrayal.
Despite the barrage, Sonnabend was still happy about one thing. He was back in the lab doing important research, leading-edge research. This is where he was always the happiest. He showed his data to Mathilde Krim. She told him it was the most important work being done.
When Sonnabend heard that the Centers for Disease Control in Atlanta was sending someone to New York to check out the mysterious new wave of PCP and KS, he grew excited. He had all this new data to show the CDC, this important new information. Sonnabend thought they'd be incredibly impressed.
Jim Curran was in charge of the CDC's venereal disease prevention division. Cases of KS and PCP were appearing with increasing frequency in Los Angeles, San Francisco, and New York. An ad hoc group at the CDC had recently been put together to investigate this disturbing trend. In time it was formalized into the Kaposi's Sarcoma and Opportunistic Infections (KSOI) Task Force; its job was to hunt down any leads about these cases.
It wasn't easy. There were no succinct categories for what was happening around the country. Specialists in virology, venereal disease, immunology, cancer, and toxicology were in the KSOI. After publication of the June 5 article on PCP in the MMWR report, calls were coming in about the pneumonia. Interestingly enough, many of the doctors were also seeing several different infections in one patient. In addition to Pneumocystis carinii, KS was common, as was CMV, parasites, and often anemia.
Curran decided he had to see some of these patients. He flew to talk with Dr. Alvin Friedman-Kien and Dr. Linda Laubenstein at the cancer institute at New York University. Curran also wanted to talk with local doctors who were treating these patients. That led him to Sonnabend.
Sonnabend talked nonstop when Curran came to his office. He said that several patterns were beginning to emerge from his research, and he described them excitedly to Curran. So far, the only people coming down with KS and PCP were young gay men. But not all young gay men, he explained. It was the homosexuals with a long history of syphilis and gonorrhea, who usually also had had hepatitis B and various parasitic infections, who were getting KS and PCP. Both were usually accompanied by other infections. It was the combination of infections that was important; cumulatively they were weakening the immune system.
Sonnabend also told Curran that there appeared to be a social factor behind all the infections. Only those who lived in the gay fast lane seemed to be coming down with disease. Men who had many sex partners. More over, the sex was fairly kinky. Fisting, inserting the hand into another man's anus; and rimming, running the tongue around and into the anus, were common among people who came down with the most venereal diseases, including these new cases of KS and PCP.
Curran listened but seemed somewhat annoyed with Sonnabend. He didn't appear terribly interested, certainly not impressed. In fact, he left the strong impression that Sonnabend's research wasn't very good. After all, he had used patients in his practice, hardly a true scientific sampling of the population. The CDC, on the other hand, knew how to track down diseases.
"Leave it to us", Curran told Sonnabend. "You take care of your patients and we'll sort out this thing."
Curran's condescending attitude infuriated Sonnabend. He was, after all, a scientist by training. More important, Sonnabend felt that he was the one in the gay community actually treating these people. It was he who saw the trends. And it was he who did the research. Not the NIH. Not the FDA. Not the CDC. "Curran's comments really got me angry" Sonnabend says. "it was a real put-down, and I've never forgotten that. Absolutely never forgotten that."
It was as if Curran had held Sonnabend and his work to be invisible. Curran's message-the CDC message-was clear. It was not Sonnabend's role to suggest theories about the growing epidemic. It was not Sonnabend's role to hypothesize about the origins of the infections or about the possible treatments. Leave that heavy-duty stuff to the professionals. Neither doctor nor patient was supposed to have the ability to figure out what was behind the epidemic killing the community. Certainly they were not supposed to know how to stop it.
When the National Institutes of Health finally got into the act several years later, America's top research scientists would also hold the community-based doctors and the community itself, the people with AIDS, to be invisible. They would ignore them for many years before a handful of AIDS activists and community doctors forced them to pay attention to the front lines of the epidemic. Unfortunately, in each year of the epidemic, thousands would die as a result of poor research protocols written by well intentioned academic scientists in ivory tower labs cut off from what was really happening on the ground. These scientists just followed standard operating procedure. AIDS, however, turned out to be anything but a standard infectious disease.
In late July of 1982, the epidemic finally received its formal name. That happened at a meeting of hemophiliacs, blood industry officials, gay political leaders, and various big shots from the CDC, NIH, and FDA.
Several months earlier it had become clear that the new disease could be spread not only through sexual body fluids but through blood as well. The CDC hoped that from this meeting would come guidelines to prevent the contamination of the nation's blood supply. It wanted to ask people who fit into high-risk groups not to give blood. By this time, Haitians and IV drug users had joined gay men as being the most at risk for the new disease.
The meeting was a disaster. Hemophiliac groups didn't want their blood disorder to be associated with a gay disease. Gay community leaders were fearful that being prevented from donating blood was just the first step in quarantining all gay men. Indeed, right-wingers in Washington were already making noises about sending gays to "camps." The FDA and the CDC fought over turf. Regulation of the blood industry fell under traditional FDA authority. The involvement of the CDC was perceived as a threat. Many FDA doctors didn't even believe that a new disease existed. They thought the CDC was simply stitching together a number of unrelated diseases to boost their budget funding.
No one was willing to agree to anything except to wait and see. There was one accomplishment, however. Different groups on different coasts were calling the new disease by many different names. Gay-Related Immune Deficiency was the most popular, but it was clearly untrue since IV drug users and Haitians were shown to be vulnerable. Gay cancer was used mostly in New York, but it focused on only one of the many opportunistic infections associated with the disease.
Someone at the meeting suggested AIDS - Acquired Immune Deficiency Syndrome. It sounded good. It distinguished this disease from inherited or chemically induced immune deficiencies. It didn't mention the word gay or even suggest gender. AIDS. It stuck.
July 27, 1982, the day the CDC adopted AIDS as the official name of the new disease, is the official date of the beginning of the AIDS epidemic. At that point, about five hundred cases of AIDS had already been reported to the CDC, of whom approximately two hundred had died. Cases had been diagnosed in twenty-four states, and the pace of new diagnoses was doubling every month. The CDC started calling the outbreak an epidemic.
By the summer of 1982, Sonnabend was beginning to see an increasing number of Pneumocystis carinii pneumonias among his patients. He did what any other professional doctor should do. He did a search of the literature. It wasn't difficult. In the Index Medicus, Sonnabend quickly found out that PCP, once a rare infection, had recently become increasingly common. Both cancer therapy and organ transplant procedures produced severe depression of immune function.
Sonnabend discovered that as far back as 1969, doctors were treating PCP with sulfa drugs. In 1977, Dr. Walter Hughes of Tennessee had published an article in the NEJM - four years before Gottlieb noted his mysterious cases of PCP in another NEJM piece. Hughes had shown that in a placebo-controlled, double-blind trial, a drug called Bactrim prevented Pneumocystis in patients with compromised immune systems.
This was an amazing discovery. PCP was a major killer. Now Sonnabend had a treatment. He immediately began to correspond with Hughes. As a result, he started to prescribe Bactrim and a similar drug, Septra, to all his patients with AIDS. That didn't prevent them from coming down with opportunistic infections, but it did save them from the deadly PCP. Sonnabend also called other community doctors with the news. They too began prescribing Bactrim and Septra. The lucky few who had Sonnabend and a handful of other doctors as their personal physicians received treatment for one of AIDS, worst killers. For the rest, there was nothing but prayer.
At no time did anyone from the biomedical research establishment at the NIH in Bethesda, at the FDA in Rockville, or at the CDC in Atlanta make any attempt to contact Sonnabend or any other community doctor to discuss AIDS treatment. The government scientists were totally cut off from the object of their growing efforts, the patients and the doctors treating them on the front lines of the epidemic.
In late 1982, Joe Sonnabend received a call from Mary Ann Liebner, a publisher. She had heard that he was doing research on the new disease AIDS and she wanted to fund a new journal. Liebner asked Sonnabend if he wanted to run it. "Well, yes, of course", he said, trying to control his absolute joy. "It would be a very good idea", he said.
Indeed. Sonnabend launched AIDS Research. He called a lot of his buddies who had done work on interferon and who were now doing research on AIDS. Don Armstrong at Memorial Sloan-Kettering in New York joined the board.
The manuscripts that arrived at his office were a little thin at first, but over the next three years Sonnabend was to publish a number of very good scientific articles. The journal covered a wide spectrum of scientific issues. And it kept a very skeptical eye cocked at the etiology of AIDS.
The more research Sonnabend did, the more convinced he became that the breakdown in immunological function was due to simultaneous infection by at least two viruses, CMV and EBV, hitting people already weakened by previous exposure to a series of STDs. Until 1984, when the virus was found that was said to be the cause of AIDS, Sonnabend continued to believe in a multicausal theory for AIDS based on CMV and EBV. Even afterward, he remained convinced that HIV was not the sole cause of AIDS. It needed a cofactor, something else to trigger it off. He published a paper expressing his views in his journal AIDS Research. He was very proud of that article. "I've never retracted it", he says. Years later, his point of view would be redeemed by none other than Robert Gallo. The term cofactors would become hot on the campus of the NIH nearly eight years after Sonnabend used it.
But in late 1982, Joe Sonnabend had another problem to deal with. He was going bankrupt. He couldn't pay his bills. His debts were big and growing.
Although Sonnabend had a large and growing practice, he wasn't making any money. Part of the problem was that he refused to take any payment from a patient who was included in his research. He said it wasn't right to ask people to pay a doctor who was using him in a study. Unfortunately, since he was such a thorough researcher, practically all his patients were included in his scientific work, so hardly anyone was paying him for visits and treatments.
The biggest drain on Sonnabend's funds, however, was the research itself. He was collecting and storing sera, making detailed records, and shipping the blood samples around the country to colleagues in laboratories. A big percentage of the material was sent to Nebraska for testing. He did the packing himself.
Mathilde Krim remembers saving Styrofoam and cardboard boxes for Sonnabend's shipments through the post office and Federal Express. She saw that he was on the verge of going under and decided to do something about it.
"Mathilde really rescued me" he recalls. "I must say" I was in terrible financial straits. She got me a lawyer. She really cleaned me up."
That was a role that Krim continued to play for many years to come. Krim was a realist. She saw a problem and she sought a solution. It was just as simple as that. Krim knew she had financial, social, and at times even political resources that most people didn't have access to. In the fight against AIDS, Krim used whatever she had. She never flagged.
But Krim also never failed to be pragmatic. She wanted things done, solutions to problems. Whatever it took. Sometimes it took friendship.
Krim figured out that Sonnabend was putting out several thousand dollars a month just mailing his research to laboratories. She literally came over to Sonnabend's lab, added up his expenses, and came up with a budget that would keep him in operation. She was the Mother Teresa of AIDS - a personal saint to Sonnabend.
At first Krim also helped Sonnabend out through her own personal funds. "I took an interest in him as a friend", she says. "And he was also one of the few guys really doing something at that time... We needed to give money to this guy", she says emphatically, almost defiantly. But Krim knew that the only way to really support Sonnabend's work was through a nonprofit organization. Many of his patients said they wanted to give money to help him, but they couldn't give it to him personally.
In late 1982, Krim started putting a nonprofit organization together. There are certain rules and regulations to follow. She needed a three person board of directors, and Sonnabend couldn't be one of them if he was going to receive any money. So Krim became chairman of the AIDS Medical Foundation, and the lawyers who had been helping her became the trustees. It took until April 1983 for New York's attorney general to grant the nonprofit status and for the first money to flow to Sonnabend "The AMF bailed me out", says Sonnabend. "It really helped with the work."
With the AMF behind him, Sonnabend's practice began to look more and more like a research center. "I was a scientist put into the role of a practitioner still being a scientist", he says. "So I utilized my practice in a different way."
Other doctors doing research on the growing epidemic heard about the nonprofit organization and applied for funds. Michael Lange, one of the earliest doctors to be involved in the AIDS epidemic, needed funds to keep his research going. He collaborated with Sonnabend, and Sonnabend told him about the AMF. Lange then became the second person to be helped by the nonprofit organization.
But once the AMF became something more than just a foundation to support one individual scientist, Krim had to put into place an IRB, an Institutional Review Board. It was made up of independent doctors and scientists and interested people who analyzed all scientific proposals for research with an eye toward protecting the patients. Safety was their major concern. Krim and Sonnabend proved they could do the legal paperwork correctly, create an IRB, request research proposals, and receive, review, and finance them. Neither one had ever done anything like this before.
But it wasn't all sweetness and light at the AMF. There were tensions, albeit small ones, between Krim and Sonnabend even in the beginning. They always revolved around bureaucratic details. Sonnabend hated them, despised bureaucracies in general. One of Krim's greatest talents was her ability to make organizations work for her, to make institutions focus on her goals and accomplish them. The AMF worked because of her extraordinary talents.
Sonnabend, however, was often obstreperous. When the AMF started expanding and hiring staff, he had trouble with them. At meetings, he shifted restlessly in his seat; he had no patience at all with parliamentary procedure.
Yet Sonnabend remained the paterfamilias of the AMF, the heart and soul of the foundation. The AMF was a true breakthrough in AIDS research. It arranged the financing for the first human trial on anti-AIDS drugs in the United States. Sonnabend ran a trial of isoprinosine, an immune system booster, and showed it had promising properties. Krim provided the contact to Newport Pharmaceuticals, which owned the drug. Newport financed the isoprinosine trial, Sonnabend ran it, and the AMF proved that good research doesn't always have to be done in a fancy lab. In fact, the AMF set a precedent and suggested that, in the case of AIDS. the best chemical research might be done in places outside the NIH and the top academic science centers.
Mathilde Krim believed in fund-raising. It was almost a way of life for her. Not only was she good at it, but it did a tremendous amount of good. Krim had been raising money for causes for years. But now she was financing AIDS research, and it was proving to be the most difficult kind of fund-raising she had ever tried.
In fact, Krim was finding raising private money for AIDS nearly impossible. Some small amounts of cash were coming in, but only from a very small circle of people who were aware of the worsening epidemic. They usually had a friend or lover who was sick.
It was that group of people who attended the AIDS Medical Foundation's first fund-raiser at Studio 54. Steve Rubell organized it and managed to raise several thousand dollars. That was followed by a fashion show at a downtown art gallery. "We collected gifts from the fashion industry and we auctioned them off", Krim remembers. "Mrs. Carter came from Plains to attend our fashion show. She's wonderful. On that occasion, for the first time, we made $100.000 profit, which was a fantastic achievement for us."
But beyond that circle it was nearly impossible to get contributions. Traditional philanthropies turned their noses up at the disease. Krim had been a member of the board of the Rockefeller Foundation, and she approached them with an appeal to help fund Sonnabend and other researchers. The head of the Rockefeller Foundation's health program, Kenneth Warren, was a personal friend. "In 1983 I went to tell him about AIDS. I said this is going to be a worldwide problem. It's going to be a catastrophe, a calamity. It's going to destroy the economy of the Third World. Rockefeller is interested in world health." Warren's reply made Krim very angry. "This is a small local problem," he said. "We deal with big questions." Krim felt she could have strangled him then and there. She went over to see Frank Thomas at the Ford Foundation, gave him the same spiel, and got a similar no-thank-you. It was like that at all of the major foundations.
Corporate America wasn't much better. They wouldn't touch it. The only money the AMF received was from individuals, and women at that time were far more generous than men. The men were always complaining that they wanted to help her out but they couldn't put the word "AIDS" on their checks. "What if my secretary sees it or my accountant?" they said. So Krim had to do some fancy maneuvering. She and her husband have a small private foundation, and it was used in a rather unusual way. "I had to route checks through the Krim Foundation. You know, launder the money." Corporate chairmen and CEOs could write a check to the Krim Foundation, but the AIDS Medical Foundation just wasn't socially acceptable.
It wasn't until Rock Hudson died in 1985 that established foundations and corporations began funding AIDS projects. AIDS had been "legitimized" to a certain degree. After all, Rock Hudson had been a personal friend of the president and his wife. Indeed, the president would say the word "AIDS" at a fund-raiser organized by Krim-the first time he uttered the word in the five years of the epidemic. By that point, money was pouring out of Washington. Back when it was desperately needed, the private sector didn't give a dime. When it was safe, it joined the parade.
When the telephone rang in Joe Sonnabend's St. Luke's Hospital laboratory in the middle of 1985, it was bad news. Mary Ann Liebner, the publisher of AIDS Research, was calling. She had been talking with Max Essex of Harvard recently, and he had told her that Sonnabend's view of AIDS was outside the mainstream of science. Essex told her that Robert Gallo had proved that AIDS was caused by a single agent and nothing else. He said that there was no scientific evidence to back up Sonnabend's multicausal theory.
So Liebuer told Sonnabend that after three years as editor, he was out. His views were not acceptable in the halls of established science. Dani Bolognesi from Duke University was going to take over her journal. It was now his journal. Thanks. Goodbye.
Bolognesi did take over within weeks. He fired Sonnabend's entire editorial board and replaced it with an AIDS retrovirus mafia of his own, which included Gallo, Essex, and Luc Montagnier. All of them were big names in AIDS research and all believed that AIDS was caused by a single virus. Adding insult to injury, Bolognesi renamed the journal AIDS Research and Human Retroviruses.
This second boot in the face was hard on Sonnabend. "This was a consequence of my heretical views," he says. "Why did these people need a new journal? They could publish anywhere. They just wanted to close me down."
Larry Kramer lived with furies inside him. Every few minutes they rose up, and Kramer spiked into a hot, blistering anger. A calm would then settle on him, only to be replaced with yet another outburst. It went on like this every hour, every day, every week, every year. Larry Kramer was the Vesuvius of anger. He was one of the angriest men on earth. Nothing was successfully camouflaged from his sight. Kramer saw injustice everywhere. It was almost like an affliction.
Luckily for Kramer, his anger was an incredibly fecund pool of molten fury. Out of it streamed books, plays, and movie screenplays. In 1978, he wrote the novel Faggots.
Faggots was meant as a Waughian ramble through the dark corners of the seventies gay sex scene. The quote at the very beginning, from Evelyn Waugh's Put out More Flags, sets the tone: "...the ancients located the deeper emotions in the bowels."
The book has hilarious scenes of group gropes in Upper East Side apartments, drug-inspired sexual frenzies in discos, the rimming of gay virgins, fist fucking at the infamous Toilet Bowl bar. It has it all, written playfully with a sense of fun. The protagonist is a Jewish screenwriterproducer clearly patterned after the author. A few years before, Kramer had written the screenplay of D. H. Lawrence's Women in Love, which he also produced.
Yet there is a strong moral undertone running through the pages. In Faggots, Kramer describes in relentless detail the new life he felt gays were creating for themselves after their liberation. It quickly becomes apparent that the sex is more than fun, it is compulsive; the relationships are less than permanent, indeed they are anonymous. By the end of the book, the freedom that came with liberation-the dark back rooms of bars, the public orgies of the baths, the pissing, the sadism and masochism-becomes a world spinning out of control. A world populated by fickle friendships and lack of commitment. A world without love.
Fred Lemish, the protagonist, cries out in pain and fury, "Why do faggots have to fuck so fucking much?! It's as if we don't have anything else to do. All we do is live in our Ghetto and dance and drug and fuck. There's a whole world out there! As much ours as theirs. I'm tired of being a New York City-Fire Island faggot, I'm tired of using my body as a faceless thing to lure another faceless thing, I want to love a Person! I want to go out and live in the world with that Person, a Person who loves me. We shouldn't have to be faithful, we should want to be faithful."
Then Fred tells the object of his love, Dinky, that he never sees happy gay couples. He's traveled all over the world and has seen not more than half a dozen couples that appear happy together. Dinky replies: "That should tell you something!" And Fred answers: "Yeah, it tells me something. It tells me no relationship in the world could survive the shit we lay on it. It tells me we're not looking at the reasons why we're doing the things we're doing." Things have to change fast, Fred continues. Lasting relationships built on love have to have a chance. Sooner or later, he tells Dinky, he is going to have to commit to someone. "Which means making a commitment to yourself. And a commitment to the notion that our shitty beginnings don't have to cripple us for life."
This has to happen, Fred cries out, "before you fuck yourself to death." The words, written in 1978, bear an eerie resemblance to those spoken by Joe Sonnabend years later to his patients who, it turns out, were quite literally fucking themselves to death.
For his literary effort, Kramer was shunned that summer at the gay resort of Cherry Grove, the scene of Faggots, concluding chapters on Fire island. Old friends looked him in the face at the Ice Palace, Fire island's hottest gay nightclub, and walked away without saying a word. His best friend stopped speaking to him. This ostracism went on for years.
In a December 21, 1981, letter sent to the New York Native, playwright Robert Chesley charged Kramer with homophobia and anti-eroticism. "I think the concealed meaning in Kramer's emotionalism is the triumph of guilt; that gay men deserve to die for their promiscuity. In his novel Faggots, Kramer told us that sex is dirty and that we ought not to be doing what we're doing.
"Read anything by Kramer closely. I think you'll find that the subtext is always: the wages of gay sin are death."
It wouldn't be until the actual discovery of the AIDS virus in 1984 that criticism of Larry Kramer or Joe Sonnabend by the gay community would die down. Very few people in the gay community could accept the idea that the sexual freedoms they had fought so long to obtain were suspect. Even when doctors such as Sonnabend began warning them in 1981 and 1982, few listened. The idea of sex causing AIDS was anathema to those who defined their liberation as gay people in terms of having as much sex with as many people in as many places in as many ways as possible.
Ironically, in describing his longing for love in gay life, for commitment between two individuals, Kramer was prophetic in his warning about promiscuity. In 1978, gays were already talking over dinner about the latest parasites to strike them and the latest medicines their doctors had prescribed. Over Sunday brunch, men were talking about their shingles and amebiasis. The year before it had been chlamydia and fungus.
They sounded like a group of retired seventy-year-olds in Century Village down in Florida complaining, over gin rummy, about their hearts and their operations and how they keep forgetting which pocket their nitroglycerine is in. *
This article was extracted from the book 'Good Intentions; How big business and the medical establishment are corrupting the
fight against AIDS' by Bruce Nussbaum. (Atlantic Monthly Press, 1990, ISBN 0-87113-385-7.)