And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (61 page)

Hysteria stories were juxtaposed with those peddling false hope. That summer various snake-oil salespeople, including Swami Shri Mataji Mirmala Devi from India, claimed to have the power to cure AIDS. One San Francisco diet therapist lectured eager gay men on “Cum as an Indicator of Health.” According to this dietician, men could monitor their health by examining the consistency of their semen. A press release boasted that he also could “talk about foods that are cum enhancers.” Federal postal inspectors cracked down on a company that, for $1,900, would send AIDS victims an injection treatment that would cure the deadly syndrome.

The response of the U.S. Department of Health and Human Services to the mounting hysteria and misinformation was its toll-free hotline, which took between 10,000 and 13,000 callers a day. This was no small feat because the service, with its six operators, was designed with neither urgency nor a national perspective in mind. Indeed, more than 90,000 calls that came in to the hotline went unanswered just in the month of July.

Like most of the summer’s hysterical episodes, the flare-up over the Reno Gay Rodeo produced more heat than light. On the night of July 26, the county commission’s gallery was crowded with reporters, fundamentalists, and anxious gays from San Francisco, who had come to make sure boxcars weren’t being readied in the hinterlands. The Washoe County Commission listened to the fundamentalists’ fears and the researchers’ reassurances, and determined that it could not legally break its contract with the National Gay Rodeo Association. Some 45,000 people bought tickets for the rodeo days, and there was no later appreciable increase in the number of AIDS or hepatitis casualties.

The last word on the controversy, however, came from Action for Animals, an animal rights group based in Berkeley, California, which expressed its indignation in letters to San Francisco’s gay papers. Gays should be ashamed of any sport, the group wrote, that is based on the “exploitation and abuse of non-humans.”

The day that Robert Gallo met with CDC officials in Atlanta, Assistant Secretary for Health Edward Brandt put together a new request for $35 million worth of further AIDS research at the Public Health Service. Brandt originally had requested the money for fiscal year 1984, which was due to begin in three months. Now, however, he asked Secretary Margaret Heckler for permission to go to the Office of Management and Budget for approval of the funds “on an accelerated business.”

Brandt understood the dangers of his request. Congress had only recently approved the $12 million supplemental AIDS funds; another appeal so soon was guaranteed to generate a hard look by the cost-conscious OMB. Nevertheless, Brandt wrote, “Each of these proposals addresses a critical health need which is receiving increased public attention and congressional scrutiny. At the same time, these three items are appropriate areas of federal involvement in which the department should continue its leadership role.” Brandt attached a six-page, single-spaced breakdown of how the FDA, CDC, and NIH would spend the money.

“The request for each of these agencies assumes that by FY [fiscal year] 1984 [October] a causative agent will have been isolated and a reliable screening test will have been developed,” Brandt concluded.

Without such a breakthrough, the agencies would need even more money.

The next day, Secretary Heckler announced that, in keeping with the administration’s commitment to AIDS as its “number-one health priority,” the government would step up its AIDS education efforts by adding new staff to its toll-free AIDS hotline. She made no comment about added funds for AIDS research.

On Capitol Hill, Representative Ted Weiss prepared for the subcommittee hearing on federal AIDS funding to be held in a few days. He still struggled with the Department of Health and Human Services for permission to allow congressional investigators to review CDC budget records. However, the agency had turned over many of the relevant internal memoranda, two of which were of particular interest to Weiss. One, which came through less-than-formal channels, was from the National Cancer Institute, ordering that before any interviews with congressional investigators, NCI researchers should advise agency officials and “invite” a top administrator to attend. So much for an independent inquiry, Weiss thought.

A second memo, dispatched by CDC Director William Foege, simply told federal agency heads that, “All material submitted to the Congress must evidence the Department’s support of the administration’s stated policies.”

At about the same time that Don Francis dropped Robert Gallo off at the Atlanta airport, reporters in San Francisco were being led through the cheerful yellow and orange hallways of a newly redecorated hospital ward that, until recently, was used by interns for naps between shifts. Now, San Francisco General Hospital’s Ward 5B was the AIDS Ward.

All the nurses were volunteers. About half were gay men and the other half were women. All had undergone extensive encounter sessions to examine their sentiments about death and dying. Cliff Morrison, a gay clinical nurse specialist, organized and designed the ward as he saw fit, because the more important hospital administrators all seemed rather embarrassed by the ward and the disease. The thirty-two-year-old Morrison was a dedicated idealist who disliked the hierarchical doctor-nurse-patient model that dominated hospitals. Doctors would not run this ward; he would, and he wouldn’t even call himself head nurse, preferring instead the less authoritative moniker of “nursing coordinator.” Patients would have a louder voice in their own care, which only made sense, Morrison noted, because they usually knew more about the intricacies of their often-experimental medications than their doctors.

Community groups, such as the Shanti Project, which recently had opened its first city-funded residences for homeless AIDS patients, had free rein in Ward 5B. Volunteers from a number of AIDS organizations and gay religious groups bustled from room to room. The day that patients went in, a social services worker began developing a plan for their life after they left. Morrison also rejected the idea of visiting hours as a concept designed for the convenience of nurses rather than patients, and he instituted policies to permit visitors to stay overnight if they wished.

There were also conversations with every patient about code status. Upon respiratory failure from, say,
Pneumocystis
pneumonia, a patient could ask for code-blue status, a request that hospital staff use all necessary means to preserve his life. Usually that meant a respirator. After two years of experience with AIDS patients, however, doctors found that 85 percent of
Pneumocystis
sufferers who went on a ventilator never came off the contraption. They died a miserable and silent death, with a tube stuck down their throats. In Ward 5B, most patients opted to go without the blue code, asking that no extraordinary measures be used to preserve their lives. In the months to come, more patients in Ward 5B made that choice than in all the other hospital wards combined.

When Cliff Morrison and Dr. Paul Volberding, the AIDS Clinic director, cut the ribbon for the opening of Ward 5B on that Tuesday afternoon, Volberding was amazed that hospitals elsewhere, particularly in New York City, weren’t planning similar wards; the facilities clearly would benefit both patients and doctors, who were still struggling to understand the grisly array of AIDS complications. It seemed that every new
MMWR
reported some new disease associated with the syndrome, some of which were maladies that most typically strike animals.

New research indicated that whatever virus killed the T-lymphocytes of AIDS patients also caused malfunctions of B-lymphocytes, another key component of the immune system. Neurological symptoms were becoming more common. Cases of lymphadenopathy were now so common that the CDC had recently defined a new phenomenon called AIDS-Related Complex, or ARC. In a conference call with a number of AIDS researchers, including Dr. Don Abrams, assistant director of the AIDS Clinic, the CDC arrived at what Abrams called a “Chinese menu” approach for its definition. A person had ARC if he or she had two clinical conditions or certain lab test results on the CDC list. Two from column A and two from column B constituted ARC. The most pressing question was whether ARC was always a precursor to AIDS or simply a milder infection. In his two-year-old study of 300 lymphadenopathy patients, Don Abrams hoped to show that ARC was a healthy reaction to infection with an AIDS virus. Patients got swollen lymph nodes and a few mild infections like thrush, Abrams hypothesized, while their bodies kept enough lymphocytes to fight off one of the deadlier diseases associated with AIDS. Abrams’s optimism was fueled by the observation that only a handful of the lymphadenopathy cohort had actually come down with AIDS—so far. However, Abrams wasn’t sure what to make of the strange disorders of the central nervous system that he was beginning to see among these patients.

Each day of work resulted in a new level of despair for Don Abrams, Paul Volberding, and the other staffers at the AIDS Clinic. Volberding prided himself in patient involvement. He came to know the lover, helped bridge any problems with the family, and then watched the patient make that last, desperate gasp for breath before dying. As the number of new cases mounted in San Francisco, and scores of worried men in the early stages of AIDS infection filled the waiting room of the AIDS Clinic, Volberding considered the national funding problems surrounding AIDS research.

Like most AIDS clinicians, Paul Volberding had been forced into the unfamiliar realm of politics to scare up more money and attention for the epidemic. In the board of directors meetings at the National KS/AIDS Foundation, Volberding often was the only heterosexual in the room. He had always seen the gay community as a monolithic bloc and was surprised at its various factions and political divisions. Rather than unite them, AIDS divided them further.

Still, among AIDS patients, Volberding saw the truth of what he long had believed: The viruses that bring disease also bring out the best in people. This certainly was true with AIDS. Dramas of courage and reconciliation played daily in the clinic rooms and hospital deathbeds. On the streets, there was talk of lovers abandoning their AIDS-stricken partners, but the most commonly enacted stories were of unparalleled fidelity. Some families abandoned their “leper” children, but most often mothers and fathers, sisters and brothers, crowded around the sick men’s beds, often returning to offer a last measure of devotion after years of estrangement. For many families, news of a Kaposi’s sarcoma or
Pneumocystis
diagnosis rendered a dual diagnosis, informing the parent both of the child’s disease and sexual orientation. Still, it mattered little, Volberding saw. Reconciliation was a far more common scenario for AIDS patients and their families than abandonment.

There was also the bravery of these men facing an early death. Routinely, they allowed Volberding or the other AIDS Clinic doctors to poke, prod, and puncture them in a vain attempt to find something that might offer a clue to the disease’s cause. Although it was clear that any medical discoveries would come too late to help these patients, few failed to voice the hope that maybe that last blood sample, painfully drawn from a near-collapsed vein, would save others from suffering. Maybe it would save others from dying.