And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (36 page)

As the Friday evening newscasts carried the first sketchy details of the startling new reports from Atlanta that day, Joe Brewer and Gary Walsh were on their way to San Francisco International Airport for the flight to Miami. Joe was incredulous that everything had worked out perfectly but, on the plane, Gary was moody, staring out the window as he watched the city twinkle below, like a chest of diamonds that had been tossed haphazardly on a black velvet blanket. San Francisco became very small and receded in the darkness, leaving Gary with the question he would ask again and again. “Why me? Why me?”

With nonhomosexual victims of AIDS to report, a spate of media attention dutifully noted the new twists in the epidemic. AIDS made rare appearances in
Time
and
Newsweek,
as well as on television networks and wire services. In the entire last quarter of 1982, only thirty articles on AIDS had appeared in the nation’s leading news magazines and newspapers, and most of those were in the year’s final days, reporting on the babies and transfusion threat. In the third quarter of 1982, only fifteen stories had appeared in these eminent news organs.

All this was about to change suddenly, of course, but the reporting that did exist had already set a pattern for how the disease would be reported: The focus was on the men in the white coats, who were sure to speak innocuously. The stories were carefully written not to inspire panic, which might inflame homophobes, or dwell too much on the seamier sex histories of the gay victims, which might hurt the sensitivities of homosexuals. The pieces always ended on a note of optimism—a breakthrough or vaccine was just around the corner. Most importantly, the epidemic was only news when it was not killing homosexuals. In this sense, AIDS remained a fundamentally gay disease, newsworthy only by virtue of the fact that it sometimes hit people who weren’t gay, exceptions that tended to prove the rule.

This is what all the talk of “GRID” and “gay cancer” had helped accomplish in the early months of 1982; AIDS was a gay disease in the popular imagination, no matter who else got it. It would be viewed as much as a gay phenomenon as a medical phenomenon, even by gays themselves, although they were the last to admit it. And the fact that it was so thoroughly identified as a gay disease by the end of 1982 would have everything to do with how the government, the scientific establishment, health officials, and the gay community itself would deal—and not deal—with this plague.

December 29

R
AYBURN
H
OUSE
O
FFICE
B
UILDING,
W
ASHINGTON
, D. C.

The new reports of babies and blood transfusions only heightened Tim Westmoreland’s apprehension about the epidemic ahead. Congress was in its Christmas recess, but Westmoreland was still riding the National Institutes of Health for more data on exactly what they were doing about AIDS. Two days before the end of the year, the Congressional Research Service sent over the report he had been seeking for months. The basic mortality statistics were startling enough, the service found, far worse than the 40-percent-dead figure that always made the papers. Of the handful of cases diagnosed in 1979, 85 percent were dead, about the same level of mortality as for cases reported in 1980. For cases reported in 1981, 60 percent already were dead, while one in four patients diagnosed between January and June of 1982 had died. Moreover, the rate of new cases reported had tripled in the past twelve months and was expected to increase further.

Westmoreland looked carefully at the dollars spent. In the first twelve months of the epidemic, June 1981 through May 1982, the CDC had spent $1 million on the outbreak, compared with $9 million on Legionnaire’s disease. In the past week, Congress had allocated $2.6 million earmarked for AIDS research at the CDC. Although the Reagan administration had said it didn’t need the money and opposed the supplemental appropriation, once passed, it became law. This would be the scenario for the next three years: Congress would have to discern for itself how much money government doctors needed to fight AIDS. The administration would resist but not put itself in the position of an on-the-record funding veto. The epidemic’s research would survive from continuing resolution to continuing resolution, a game that would ultimately achieve some funding for the doctors while disabling any attempt to plan ahead for studies that might be needed as the scourge continued to grow.

It was the end of 1982, a year in which a movie about a lovable space alien,
E. T.,
had topped all box office records, and two movies about people dressing in drag,
Tootsie
and
Victor/Victoria,
had been surprise smashes. The class movie of the year was a film about Mahatma Gandhi, exploring issues of prejudice and brotherhood, the power of love and the allure of hatred. Paul McCartney had topped the record charts with a perky duet with Stevie Wonder, “Ebony and Ivory,” a song about racial bias. Despite the cultural obsession with androgyny, homosexuality, and prejudice, 1982 marked the beginning of the time, commentators would later note, when America started feeling good about itself again. Old-fashioned red-white-and-blue patriotism was coming back into vogue. Certainly, nobody was paying much attention to an epidemic among people like homosexuals and Haitians, even though by the end of the year, the Centers for Disease Control reported that the number of documented AIDS cases in the United States had risen to nearly 900.

The truth was that, at the end of 1982, there were 1,000 or 2,000 people, at most, in the United States who truly understood the dimensions of the crisis that was unfolding. For these people, it would be a restless New Year’s.

December 31

T
HE
E
VERGLADES
, F
LORIDA

Gary Walsh and Joe Brewer had decided to leave Key West and check out the Everglades because neither had ever been there and it seemed like an adventure. Gary, however, begged out of the evening early, saying he was too tired to stay up until midnight. For the first time, Joe could see Gary’s weakness. The energy with which Gary was constantly able to hype himself was draining away.

Gary climbed into his bed in their sticky room while Joe, feeling dismal, mixed himself a martini and stared out the window. Darkness had enveloped the end of the year and darkness would soon envelop his friend, and there “was nothing to be done. In the distance, the clamor of celebrants greeting the New Year echoed. Joe lifted his glass in the direction of where Gary now slept, growing more distant with each hour. “Happy New Year,” Joe whispered to himself.

“Happy New Year, Joseph.”

C
ASTRO
D
ISTRICT
, S
AN
F
RANCISCO

Cleve Jones clapped his hands enthusiastically when “KS Poster Boy” Bobbi Campbell made his entrance at Cleve’s New Year’s Eve party clad in a rhinestone tiara and a silver lame, floor-length gown. The nurse was now a member of the Sisters of Perpetual Indulgence and had rechristened himself Sister Florence Nightmare. He looked ravishing, Cleve thought, even if his ever-present “I Will Survive” button clashed with the lame. Sister Boom-Boom, Sister Vicious Power Hungry Bitch, and Sister Missionary Position had already arrived and were dancing habit to holster with the gay police officers who were grinding away in the cleared-out living room.

Everybody was there, Cleve beamed. Dozens of volunteers from the KS Foundation had come, along with an anybody-who’s-anybody list of gay politicos and a good sprinkling of the city’s heterosexually powerful. A San Francisco supervisor was snorting cocaine in Cleve’s bedroom. Supervisor Harry Britt had come with Bill Kraus, who was collecting accolades for his role in passing the first supplemental money for AIDS research.

Bill Kraus was thoroughly single again, Cleve could tell, and, oh, how he could work the crowd. Yet, like Cleve, Bill seemed a little quiet. He told Cleve they’d have to talk, something about AIDS, in the next few days. Then, Bill disappeared into the throng.

The specially made tapes reached a disco frenzy, and the house shook with the synthesized beat of the year’s top dance hit, Laura Branigan’s “Gloria.” When the party neared midnight, Cleve allowed himself some champagne. He hadn’t been drinking all night, aware that once he started drinking he was not likely to stop and he’d end up embarrassing himself in front of all these politicians. The smooth flow of champagne, however, made Cleve feel withdrawn. He wasn’t unhappy, just detached.

He had carved himself a wonderful niche in nine years, he realized as he surveyed the crowd. His job as an aide to Assemblyman Art Agnos gave him a headstart on whatever political career he chose to pursue. Agnos was being a virtual saint by letting him spend all his time at the KS Foundation. All this gave Cleve a warm feeling, but it still did not make him feel like partying. There was something else that, for once, Cleve could see as bigger than himself and his own ambitions. The horror. He couldn’t escape the sense of impending doom.

The clock struck midnight and it became 1983, but the friends, the midnight dancing, the wonderful music, and even the champagne couldn’t melt the stone in Cleve’s stomach on that New Year. He knew a dark secret. Something they didn’t know. When he looked at Bobbi Campbell, he saw more than the tiara flashing; Bobbi would die and so would thousands more. It had all been one big party and, now, it was about to end.

January 3, 1983

P
ITIE
-S
ALPETRIERE
H
OSPITAL
,
P
ARIS

They would not need much of a lymph node, Dr. Willy Rozenbaum told the gay fashion designer who was suffering from mild lymphadenopathy, just a scrap the size of the top of your little finger, enough to try to culture, to find out what was causing SIDA, the French term for AIDS. Rozenbaum wasn’t performing the excision, but he wanted to be on hand to make sure nothing went wrong. Dr. Francoise Barre from the Pasteur Institute also sensed this was something important. She roused herself on the brisk morning the biopsy had been ordered, toting the supplies she needed to preserve the specimen for the trip across town to the institute in the Latin quarter.

Barre peered over her oversized tortoiseshell glasses at the brief procedure and smiled at Rozenbaum’s agitation. He was always so excitable. Minutes later, she packed the small piece of lymph node on ice and rushed from the hospital. Back at the Pasteur Institute, Dr. Luc Montagnier put the tissue into a cell culture of T-lymphocytes and gave instructions to Barre to monitor its growth over the next weeks.

Dr. Barre hardly needed the guidance. Quiet and methodical, the thirty-four-year-old researcher had spent most of her career in viral labs, from the Pasteur Institute to the National Cancer Institute, and had earned a reputation for her thoroughness. Both Barre and Montagnier suspected that they would find a retrovirus like the Human T-cell Leukemia virus, or HTLV. Barre had once studied under the NCI retrovirology whiz, Robert Gallo, who had proposed HTLV as a possible cause of AIDS. If the virus in the lymph node behaved like HTLV, they should soon see a proliferation of lymphocytes in the growth culture. Though such viral stimulation typically took weeks to accomplish, Barre decided to start checking the culture every three days, just to keep things under proper scrutiny. This was a new disease, she thought, you never knew what you might find.

January 4

C
ENTERS FOR
D
ISEASE
C
ONTROL,
A
TLANTA

Don Francis pounded the table with his fist. The other officials from the Centers for Disease Control exchanged vaguely embarrassed glances. The blood bankers were becoming visibly angry.

“How many people have to die?” shouted Francis, his fist hitting the table again. “How many deaths do you need? Give us the threshold of death that you need in order to believe that this is happening, and we’ll meet at that time and we can start doing something.”

As far as Francis was concerned, the assembled leaders of the blood banking industry were about to take a course of action that could, at best, be termed negligent homicide, although Francis was known to drop the word “negligent” in private discussions on the issue. The blood banks refused to believe that transfusion-associated AIDS existed, and now they were going to kill people because of it, Francis thought. It was that simple.

Privately, almost all the officials from the Centers for Disease Control agreed with Don Francis, although they were groaning to themselves that he had shown so little politesse as to say it aloud.

The meeting of this ad hoc advisory committee for the U.S. Public Health Service had been fashioned to embrace every group with an interest in the burgeoning epidemic, including the American Red Cross, the American Association of Blood Banks, the National Hemophilia Foundation, the National Gay Task Force, and the Pharmaceutical Manufacturers Association, which represented the commercial blood-products makers, as well as the representatives from the National Institutes of Health and the Food and Drug Administration, the one federal agency that has regulatory power over the blood banks. Congressional aide Tim Westmoreland was there too, as well as reporters from most of the major medical journals and the
Philadelphia Inquirer,
the only major newspaper to provide thorough coverage of the meeting.

The CDC had hoped the assembly would produce some action to arrest the threat the new syndrome posed to the nation’s blood supply. Even before the meeting opened, however, it was clear that each group had come with its own agenda, and on most lists, stopping the potential spread of AIDS was secondary. Blood bankers were openly skeptical of the CDC claim that AIDS could be transmitted through blood. Some FDA officials remained unconvinced that AIDS even existed. Gay groups already had condemned any call for screening of blood donors as “scapegoating” homosexuals. The San Francisco Coordinating Committee of Gay and Lesbian Services, chaired by Pat Norman, issued a policy paper asserting that donor screening was “reminiscent of miscegenation blood laws that divided black blood from white” and “similar in concept to the World War II rounding up of Japanese-Americans in the western half of the country to minimize the possibility of espionage.”

As Tim Westmoreland saw the players assemble in the CDC’s Auditorium A, all facing off at tables positioned in a large square, he sensed that this would not be a polite meeting of scientists engaged in the usual academic one-upmanship. There were interests to guard and turfs to protect. In most reminiscences, the participants would simply refer to the conference as “that horrible meeting.”

Jim Curran described the two options the blood industry could take. They could either adopt guidelines to keep people at high risk from donating blood or they could start testing blood to try to weed out likely AIDS carriers. Curran gave the blood bankers a sobering conclusion to his talk: There was at least a one-year incubation period for AIDS. No matter what course the blood industry took that day, it would have no effect for another year, during which still more cases of blood-borne AIDS would incubate and emerge.

It was left to immunologist Thomas Spira, one of the CDC’s top virologists, to make the case for the testing of all blood products, the route that the AIDS Task Force desperately hoped blood bankers would follow. Although no test for AIDS itself yet existed, Spira had spent his past weeks testing the blood of AIDS patients for other markers. The trait that distinguished the blood of AIDS sufferers was not difficult to find, considering that virtually everybody in AIDS risk groups—gay men, intravenous drug users, and hemophiliacs—had also suffered from hepatitis B at some point in their lives. Although the hepatitis virus usually disappeared after recovery, the blood still harbored antibodies to the core of the virus. Thus, Spira had found that 88 percent of the blood from gay AIDS patients contained hepatitis core antibodies, while all the blood from AIDS patients who were intravenous drug users had the antibodies, and 80 percent of people with lymphadenopathy carried the antibodies. The test might not screen out all AIDS carriers, Spira suggested, but it would eliminate enough to sharply reduce the threat of transmitting AIDS through transfusions.

CDC officials hoped the data on the testing for a surrogate marker would point the discussions toward what blood banks and commercial blood-products manufacturers could do about AIDS. Instead, the discussion turned into a heated debate about the reality of transfusion AIDS.

“Don’t overstate the facts,” said Dr. Aaron Kellner, president of the New York Blood Center. “There are at most three cases of AIDS from blood donation and the evidence in two of these cases is very soft. And there are only a handful of cases among hemophiliacs.”

Besides, Kellner said, the proposed testing would cost his center $5 million to implement. False-positive test results would result in the unnecessary disposal of blood that wasn’t infected with AIDS. “We must be careful not to overreact,” he said. “The evidence is tenuous.”

Dr. Joseph Bove, director of the blood bank at Yale University Hospitals and chair of the FDA advisory committee on blood safety, joined in the objections. “We are contemplating all these wide-ranging measures because one baby got AIDS after transfusion from a person who later came down with AIDS and there may be a few other cases.”

Assistant CDC director Jeffrey Koplan was taken aback. “To bury our heads in the sand and say, ‘Let’s wait for more cases’ is not an adequate public health measure,” he argued.

Dr. Bruce Evatt of the CDC tried to reassert the data about hemophiliacs. AIDS simply did not happen among these people before 1982. In only the past year, however, 6 of just 100 hemophiliacs in Ohio were dead of AIDS, and 3 more were suffering from severe blood problems associated with the syndrome. Nearly 10 percent already were sick with something having to do with AIDS, Evatt said. What kind of proof did the blood banks need?

Dr. Selma Dritz from the San Francisco Department of Public Health sympathized with the blood bankers. She knew that vast sums of money were involved with any surrogate testing of blood. She also knew that a more moderate proposal to screen out groups at high risk for AIDS from blood donors would severely hurt urban blood banks that relied on civic-minded homosexuals as an essential part of their donor pool. Still, Dritz had the health of her city to tend to and a board of supervisors to answer to. Like so many health officials, her data was hardly reassuring to the blood bankers. “Of 140 (AIDS patients), 10 or 11 had donated whole blood in the previous few years,” she said. “We don’t know how many others sold their blood or plasma at commercial centers.”

At the very least, all people at high risk for AIDS should be ordered to stop giving blood, Dritz thought. Given the fact that carriers could be perfectly healthy while donating a fatal dose of blood, as was the case with the San Francisco baby, Dritz felt that all gays should stop donating.

As the blood bankers got back to arguing the specific case histories of CDC’s transfusion AIDS victims, Don Francis started shouting about the “threshold of action.” The evidence that the latency period might be long, much longer than anyone suggested, fueled Francis’s conviction that the job of the CDC was not merely to monitor the spread of AIDS and count its victims, but to control the disease. “We can’t constantly be reacting,” he pleaded, “and be constantly behind the eight ball.”

Everybody could tell now the meeting was going badly, very badly. The blood bankers were worried about money and the costs of drawing new donors; they were also suspicious of all the reporters covering the conference. Was the CDC trying to pressure them into action? FDA representatives were also wary of the CDC and were slightly irritated that the FDA’s turf had been so brazenly invaded by the hotshot epidemiologists from Atlanta. Blood policy was FDA terrain and would stay that way.

Representatives from gay organizations sided with the CDC on surrogate tests of blood but firmly opposed taking any action to screen blood donors, saying the screening would pose serious civil rights questions.

“So-called ‘fast-lane’ gays are causing the problem and they are just a minority of male homosexuals,” offered Dr. Bruce Voeller, representing the National Gay Task Force. “You’ll stigmatize at the time of a major civil rights movement a whole group, only a tiny fraction of whom qualify as the problem we are here to address…. Also, many gays don’t self-identify as such and won’t respond to the questionnaire.”

Representatives from hemophiliac organizations were stunned by the gay perspective. What about a hemophiliac’s right to life? they asked.

After a lunch break, the blood bankers returned even more resolutely opposed to blood testing, arguing almost solely on fiscal grounds. Although largely run by non-profit organizations like the Red Cross, the blood industry represented big money, with annual receipts of a billion dollars. Their business of providing the blood for 3.5 million transfusions a year was threatened. Already the high cost of blood had created new markets for self-donation. Prices had to be competitive, blood bankers knew. The cost of testing for hepatitis antibodies, Kellner from the New York Blood Center suggested, would be $100 million annually for the entire nation. That was simply too much. Instead, he proposed, perhaps, some pilot studies in New York, Los Angeles, and San Francisco.

The for-profit blood-products manufacturers, however, did not enjoy the cartel on their merchandise that the non-profit blood centers held. With the fear of direct competition for their market, the spokesman for Alpha Therapeutic Corporation announced that his firm, which manufactured Factor VIII, would immediately begin screening donors and exclude all people in high-risk groups, including all gays, whether or not they appeared to be “fast-lane.” The position infuriated the gay representatives.

The goal of the meeting was to forward some consensus recommendations to Dr. Edward Brandt, who, as Assistant Secretary for Health of the U.S. Department of Health and Human Services, headed the Public Health Service. At the end of the meeting, CDC’s Jeffrey Koplan, who was chairing it, began proposing consensus recommendations. Bruce Voeller suggested a resolution opposed to deferral of high-risk donors; the proposal was defeated soundly on a voice vote. Other proposals met similar fates or were modified so extensively that they were rendered meaningless. The meeting adjourned with no recommendation or agreed-upon course of action. Things would simply go on as they were, as if nothing was happening.