And the Band Played On
Now that scientists knew what they were looking for, researchers were able to study various body fluids and confirm the presence of the AIDS agent. HTLV-III was recovered in the semen of both an AIDS-stricken man and a healthy gay man with HTLV-III antibodies, proving definitively that healthy carriers could spread AIDS. Virus also was recovered in vaginal fluids of an infected woman, explaining the bidirectional heterosexual transmission that clearly was spreading the disease in Africa. The retrieval of virus from the saliva of eight ARC patients was more problematical. Not one of the nation’s nearly 6,000 AIDS cases had contracted the disease from saliva. Given the low levels of virus in saliva, Dr. Jay Levy frequently argued that the only way you could get AIDS from spit was to inject a gallon of saliva intravenously. Still, sensing the potential for hysteria, Dr. Edward Brandt held a press conference as soon as the saliva studies were released to assure the public they would not get AIDS from a sneezing homosexual.
By early October, NCI scientists also found a drug they hoped might prove effective in fighting AIDS. Suramin had been used for sixty years to treat African sleeping sickness. In test tubes, the drug interfered with the reverse transcriptase enzyme, disabling HTLV-III’s reproduction mechanism. Dr. Paul Volberding made plans to test the drug at San Francisco General Hospital’s AIDS Clinic in the early months of 1985.
Antibody testing continued to offer reassurances that the AIDS epidemic hadn’t broken out of the afflicted communities to threaten the entire society. The virus simply was not spreading outside the previously defined routes of transmission. NCI tests on the families of hemophiliacs found that no family members were infected with HTLV-III, despite daily contact with HTLV-afflicted hemophiliacs. In labs throughout the country, doctors and technicians who had been working with AIDS for years eagerly tested themselves. Between needle sticks and constant exposure to infected blood, most considered it likely that they harbored HTLV-III in their blood. In test after test, however, their fears proved unfounded. A substantial dose of the virus fed directly into the bloodstream, either through sex or transfusion, was required to get AIDS.
The fact that science was making swift strides in understanding AIDS did not mean that the disease had acquired a new respectability in medical circles. The syndrome still lacked star quality, and most scientists who labored on it did so without much institutional support. Assistant professors who were among the international experts in AIDS research were denied promotions, while associate professorships went to doctors studying more conventional diseases. At the University of California in San Francisco, administrators mentioned to one of the nation’s foremost researchers that they wanted less publicity about AIDS. UC officials worried that top interns were choosing to go to other medical centers because the UCSF teaching hospital was San Francisco General, the nation’s premier AIDS facility. The best medical school graduates, they feared, would not want to perform internships at a hospital if all they would see was one kind of patient.
Researchers, however, thought the reluctance to embrace AIDS as a legitimate topic for scientific study reflected more than just concern over the quality of interns a university might attract. Put simply, AIDS continued to embarrass people. From the start, it had made people uncomfortable, whether they were in government or media, in public health or prominent universities. AIDS was about homosexuals and anal intercourse, and all kinds of things that were just plain embarrassing. And when UCSF opened its own AIDS clinic in the summer, it did not call it a clinic for Acquired Immune Deficiency Syndrome, but a center for Adult Immune Deficiency.
SAN FRANCISCO
Men carried surgical tubing down the hall of Animals, a popular gay bathhouse, as casually as business executives carried briefcases in the financial district. Once upstairs, one man wrapped the tubing around another patron’s biceps, pausing until the vein bulged. A long sigh signaled that the needle had accurately delivered the methadrine to the patron’s central nervous system. When the man with the needle noticed somebody watching him, he cheerfully offered the observer a hit of crystal. Across the hall, another man’s arm disappeared between the legs of his partner, and throughout the bathhouse, scores of men participated in sexual acts that did not fall under the heading of “safe” in the risk-reduction guidelines passed out by the Bay Area Physicians for Human Rights.
By late September, patrons at the city’s remaining bathhouses and private sex clubs included private detectives who had been hired by the San Francisco Department of Public Health to document whether the facilities encouraged sexual activity that spread AIDS. The report was to be used when Merv Silverman went to court in a few weeks to close down the bathhouses.
Silverman had hoped the issue would not come to such a confrontation, but he had no doubt as to what course of action he would take when he read the investigators’ reports.
Even Silverman, who was not naive about what went on in gay bathhouses, was shocked by what investigators found. The X-rated, eighty-five-page report certainly documented the fact that condoms and safe-sex brochures were available in almost every bathhouse. Most patrons, however, ignored them. Just about every type of unsafe sex imaginable, and many variations that were unimaginable, were being practiced with carefree abandonment at the facilities. That, after all, was what bathhouses were for.
Of even more concern was new data on gay sexual behavior generated by the first professionally designed random survey of San Francisco homosexuals. The study, undertaken by Research & Decisions, a prestigious marketing firm, found that 12 percent of local gay men had gone to a private sex club at some point during the month of August. During the same period, 1 in 10 gay men had gone to a bathhouse. The fact that so many gay men continued attending the facilities, despite the unprecedented publicity about their dangers, argued against the notion that baths would close for lack of business if gays were educated about AIDS.
Pressure mounted on Silverman not only from political quarters but from medical authorities alarmed at the steep increase of local AIDS cases. At one hospital, sixty doctors signed an open letter to Mayor Feinstein in the Chronicle, demanding closure and saying that “there is a strong need for aggressive public policy measures that do not capitulate to any political pressure.” On September 14, Silverman met with Mayor Feinstein, hospital administrators, and Jim Cur ran from the CDC to privately announce that he would close the baths as soon as the private investigators’ reports were complete.
During the third week of September 1984, America’s AIDS caseload surpassed 6,000. Treatment costs for these first patients, the CDC estimated that week, would run at about $1 billion.
ATLANTA
The car swerved, jolting Don Francis awake. Francis regained control of his Volvo and continued home. The night before, he had arrived home at 6 P.M. and was in bed by 8:30 P.M., as usual, so he could slip into the CDC headquarters on Clifton Road by 5 A.M. to get a few hours of work done before the meetings began and the phone started ringing. When he had a paper to write, Francis went to work at 2 A.M., sometimes running into Jim Curran, who would only then be on his way out of the office. Francis had learned such rigorous schedules when he was fighting smallpox in India. It was you against the disease, his ethos went, and the disease might win if you let up for one day. In India, however, Francis had felt he had a chance to win.
By the time he was nodding asleep at the wheel of his car on the way home from a sixteen-hour day at the CDC, he no longer had that confidence in regard to AIDS. More than three years into the epidemic, the CDC still did not have the staff or resources to tackle the syndrome. Francis’s proposals were still being killed by budget officials. Meanwhile, scientific politicking continued to taint the field. Bob Gallo had taken an increasingly strong role in AIDS science, exacerbating the divisions among researchers over the NCI-Pasteur feud.
On his rare evenings home, Francis wondered what he was doing with his life. His sons, four and six years old, barely knew their father: He had spent most of their lives waging his Sisyphean struggle
against a strange acronym they did not comprehend. All the boys knew was that the neighbors did not want their kids to play with the children of a scientist involved in AIDS research; it might be catching.
Don Francis’s wife, Karen, had given up her job with the Epidemiological Intelligence Service to move to Atlanta. She was a highly esteemed epidemiologist in her own right, having discovered the link between aspirin use and Reye’s syndrome. Now she was without a job, without her familiar home, and for all practical purposes, without her husband.
Increasingly, Don Francis fell into conflicts with Jim Curran. Francis’s orientation was toward control: Find the uninfected people and get them vaccinated. Curran’s, however, was oriented in epidemiology, charting the course of diseases through a population. He did not have the background in control. He was also a realist. He favored control programs, but he knew that the money didn’t exist for such projects even if he designed them. Other AIDS staffers were not surprised at the clashes between Francis and Curran, only that they had taken so long to surface. Curran was a take-charge administrator who kept firm control over his department. This put him in an awkward position with Francis. On the one hand, Curran was respectful of Francis’s international reputation; on the other, he wasn’t about to surrender control of the AIDS Activities Office. Increasingly, Francis was on the losing end of policy decisions at CDC.
On September 21, Don Francis met with Walt Dowdle, Director of the Center for Infectious Diseases, and outlined his frustration at the lack of a crash vaccine development project and infection control programs. He wanted out. Dowdle warned Francis against a hasty move and suggested he chart where he’d like his career to move in future years. Francis agreed, although he had resolved by then that whatever his future included, it would not mean working in Atlanta. He had never known defeat before, and he would not stay at the CDC headquarters and endure its daily reminders.
September 23
GAY COMMUNITY SERVICES CENTER, NEW YORK CITY
The 200 gay physicians munched on dolmades and shoved broccoli into vegetable dips. Jim Curran fiddled with his slide projector. Curran was always cautious when he talked to newspaper reporters, fearful that his observations on the future of the AIDS epidemic might be fashioned into the stuff of sensational headlines, but he felt no such inhibition with the gay community. Instead, he felt his mission was to constantly stress the gravity of the unfolding epidemic. With each new epidemiological study revealing a more disheartening future, Curran came loaded with bad news to the general membership meeting of the New York Physicians for Human Rights.
“AIDS will certainly be the major cause of death during the lifetime of everyone here, and probably through the 21st century,” Curran said. “In spite of good intentions and continuing efforts of the gay community and scientific sector, we should not expect scientific technology to rescue us from AIDS in the next few years, although eventually technology may help conquer the disease.”
An unmarried man over the age of fifteen in New York City now stood a higher chance of dying of AIDS than of heart disease, which is traditionally the greatest killer of men, Curran said. In San Francisco, a single man was five times more likely to die of AIDS than of a heart attack. It was now clear that the CDC had vastly underestimated the scope of the epidemic, he added. Curran recited the statistics garnered from the San Francisco hepatitis cohort and more recent studies among hemophiliacs and IV drug users. Between 200,000 and 300,000 were infected with HTLV-III/LAV—and possibly many more. At least 10 percent would get AIDS, Curran estimated, and perhaps as many as 20 percent. Within five years, he added, the nation could expect 25,000 AIDS cases.
Given the sheer prevalence of AIDS infection, reductions in sexual contacts were not enough to avoid infection, Curran noted. A man who was having one-third the number of sexual partners of a year ago had done nothing to reduce his overall risk of AIDS if three times as many people were infected with the virus. In fact, with increases in prevalence outpacing changes in behavior, it appeared that the typical gay man who participated in any risky sexual behavior stood a greater chance of contracting the AIDS virus.
Curran bluntly addressed the political concerns that these AIDS statistics generated. The question was not if there would be a backlash against gays, but when. It might come soon. “You should get ready for it,” he said. And, of course, there would be the loss of lives.
“When I spoke before you two years ago, on a kitchen chair in a living room, I looked out at the audience and felt these guys are the same age as I am. We’re the same age as the men who are dying of AIDS. That was two years ago. The average age of men dying of AIDS is now younger than ours. It is time to start thinking about how to save the younger generations of gay men as they move out into sexual activity in a world full of AIDS.”
The New York Native subsequently chastised Curran for his assessment, saying the federal government had no intention of finding an AIDS cure if it was warning gays that AIDS would be around until the next century. Ironically, Curran’s projections that night vastly underestimated the scope of the AIDS epidemic. There would be 25,000 AIDS cases within two years, not five, and by then, the estimates of infected Americans would increase fivefold.
Even the milder prognosis, however, stunned most of the earnest physicians at the NYPHR meeting, particularly because it came at a time when the already lamentable state of affairs regarding AIDS in New York City was getting worse.
In August, Dr. Roger Enlow resigned as head of the Office of Gay and Lesbian Health Concerns. Although Enlow declined to give interviews about his experiences, he did offer one comment about his eighteen months working on AIDS in the Koch administration: “I spent a lot of time talking.”
Meetings of the Interagency Task Force on AIDS turned into gripe sessions with members fuming about the lack of any substantive action to solve the festering problems. Task force member Arthur Felson came to the September meeting with a detailed review of what the group had accomplished in its two years of existence. By Felson’s count, the task force had discussed the problem of housing for AIDS patients sixteen times, the lack of any active surveillance in the city fourteen times, and the need for home health care eight times, all without any resulting moves by the city government. Health Commissioner David Sencer acknowledged that the task force was “better at raising issues than solving them” and announced he would form yet another task force. This one, he said, would be geared at action rather than talk.
The sorry state of affairs led Larry Kramer to try again to be reinstated on the board of directors for Gay Men’s Health Crisis. He had four producers making offers on The Normal Heart; the play most certainly would go into production in early 1985, but he certainly had time to work on AIDS now. The absence of any official moves against AIDS had only vindicated his anger, Kramer told the board when they met in mid-September. Kramer was devastated when the board voted down his request to be reinstated. Paul Popham said, “He’ll join the board over my dead body.”
October 1
MUSCLE SYSTEM, SAN FRANCISCO
Bill Kraus had completed a set of Nautilus exercises and fell back on a bench for a rest. He bent his head down to catch his breath and spotted a purple spot on his right thigh. He told himself it was a blood blister. That night, Bill had two friends over for dinner; they laughed, drank, and argued about movies, and Bill didn’t mention anything about the spot on his right thigh. He waited two days before he went to see Marc Conant.
Conant’s assistant Mark Illeman saw Bill first.
“I can’t tell you for sure that it’s not KS,” said Illeman.
He could tell Bill already knew it was; he was hoping against hope that he was wrong.
Marc Conant and Bill Kraus had grown so close in the past years of behind-the-scenes maneuvering on AIDS that Conant felt a numbness fall over him when he walked into the examination room. He felt Bill’s neck and noted that virtually overnight, Bill’s lymph nodes had burst forth with the swelling characteristic of
AIDS patients. He could tell right away that the five-millimeter lesion was not a blood blister, but he couldn’t offer Bill any definitive diagnosis until he performed a biopsy. Normally, KS biopsies took ten days to perform, but Conant assured Bill he’d have the results right away.
As Bill started dressing, Conant walked into the hall and told Illeman to record a diagnosis of Kaposi’s sarcoma on Bill Kraus’s chart.
“He’s got it,” Conant said somberly.
49
DEPRESSION
October 1984
SAN FRANCISCO
So many people had AIDS now that the old Public Health Service Hospital was converted into an AIDS hospital. Bill Nelson was surprised to see that all the old hands from San Francisco General Hospital’s AIDS ward were there, serving as administrators. They were together again, like the old days on Ward 5B, back when you could have an AIDS ward that only had twelve beds.
Then Bill noticed that Allyson Moed, who had been the head nurse at 5B, was having a hard time breathing; she had Pneumocystis. Another nurse, it turned out, had toxoplasmosis, while nursing unit coordinator Cliff Morrison had tuberculosis.
Bill looked at himself while passing a mirror. Kaposi’s sarcoma lesions covered his face.
“I can’t go outside with all these KS lesions on my face,” Bill said. “I can’t be seen in public.”
Bill bolted upright in bed, his face covered with a film of cold sweat. Earlier in the day, he had read a story in the paper in which Marc Conant predicted that, by 1988, there would be so many AIDS cases in San Francisco that the city might need an AIDS hospital and that the city should think about converting the shut-down Public Health Service Hospital into an AIDS facility. Everybody was talking about how crazy Conant was. That was where Bill Nelson’s dream had come from.