And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (78 page)

Gay leaders in other cities had by now moved to head off action against their bathhouses by public health authorities. A spokesman for New York State Health Commissioner David Axelrod termed actions against the bathhouses “ridiculous,” citing the sex fiend argument that gays would be screwing in the bushes if they didn’t have the baths. Both New York Governor Cuomo and Axelrod referred discussion of closure to the advisory council of the AIDS Institute, which was dominated by gay leaders opposed to such a move. When Dr. Roger Enlow of the New York City Health Department announced the city’s opposition to bathhouse regulation, he noted with obvious satisfaction that Robert Bolan had lost his BAPHR post in supporting closure. “At times like these, we are tempted to turn to authority figures, as we did when we were children, to ask them to protect us, to take the responsibility from our shoulders, to tell us that they can save us from ourselves,” Enlow wrote.

The speed with which New York officials jumped to the defense of civil liberties was not matched by an enthusiasm to spend money to prevent the disease. Even as Governor Cuomo assured gay leaders he would never move against the bathhouses, he opposed—for the second year in a row—allocating state funds to fight AIDS. After Cuomo neglected to put any money into his state budget for AIDS, the legislature voted to spend $1.2 million for AIDS research and $400,000 more for education.

In Los Angeles, public health moves against bathhouses were also dismissed out of hand. UCLA researcher Michael Gottlieb was growing more convinced that the gay community should act against the facilities, but gay leaders continued to talk convincingly of their strategy to “engineer out” the riskiest playrooms of the baths, such as orgy chambers and glory holes. Privately, gay leaders sometimes confided that the cat was already out of the bag in the AIDS epidemic and that closing the bathhouses would no longer do much good to slow the tide of infection. Gottlieb considered this unusual logic from leaders who publicly maintained that bathhouses did not contribute to the spread of AIDS. He also wondered whether public health officials were saying that the epidemic was out of control long before it actually was.

Gottlieb had already fallen into conflict with public health authorities on the issue of contact tracing. Gottlieb thought that health officials should track down sexual contacts of AIDS patients much as they did the contacts of syphilis patients. Health officials argued that authorities had no magic bullet to offer people exposed to AIDS, like that offered to syphilis patients. Contact tracing would only scare people, they said. There were also civil rights concerns of privacy to consider. The issue of people who might unknowingly be spreading AIDS to others—and the rights of this next generation of victims—was not considered.

Southern California also was running its scant education programs on a shoestring. The city’s major AIDS service group, AIDS Project-Los Angeles, continued to be funded exclusively by private contributions. Only eight paid staffers coordinated services to the city with the nation’s third highest AIDS caseload. Since the county board of supervisors was dominated by conservative Republicans, there was no hope of county funds. Los Angeles education efforts, therefore, depended on state money.

As in New York, state funding requests met with gubernatorial opposition. Although California’s Republican governor George Deukmejian was ready to approve $2.9 million for AIDS research, he opposed the legislature’s plan for $1 million in AIDS education monies. At a legislative hearing, Peter Rank, the head of the state Department of Health Services, said the funding was unnecessary, because, “We spent $500,000 on education last year.”

Legislative efforts to plan California’s AIDS program also were stymied by the governor, who opposed long-term planning for the epidemic. The previous year, the legislature had established an advisory committee made up of both legislative and gubernatorial appointees to make budget recommendations for AIDS. By early 1984, all the legislative slots on the committee were filled, but Governor Deukmejian had resisted nominating a single member for the group. Despite the Deukmejian administration’s rhetoric about AIDS being the state’s “number-one health priority,” Democrats in Sacramento recognized the governor’s strategy as similar to that of the conservative president in Washington. Long-term planning for the epidemic would require a long-term commitment of resources, and that was something that both the Deukmejian and the Reagan administration wanted to avoid.

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By late May, this truth was dawning on Assistant Secretary for Health Edward Brandt. With the announcement of HTLV-III, Brandt quickly identified the four paths on which research should proceed. Top priority was the development of a blood test. Federal researchers also had to start seeking an AIDS vaccine and effective AIDS treatments while nailing down HTLV-III as the cause of AIDS. Brandt by now knew the conclusions of the CDC director’s review committee on that agency’s research needs. He also felt that now that the AIDS virus was discovered, the NIH should receive enough money to explore every avenue for fighting the disease. Brandt put a $55 million price tag on the new initiatives with $20 million to be immediately infused into AIDS research for the remaining four months of the current fiscal year. He made the requests in a May 25 memo to Secretary Heckler.

“These exciting discoveries bring us much closer to the detection, prevention and treatment of AIDS,” Brandt wrote. “There is much left to do…. In order to seize the opportunities which the recent breakthroughs have provided us, we will need additional funds both for the remainder of this fiscal year and for FY 1985. Although I realize that general policy would discourage supplemental and amendment requests at this time, I believe that the unique situation with respect to AIDS justifies our forwarding the requests at this time.”

Brandt attached twenty-one pages of detailed breakdowns of how the money would be spent. Once again, he began what would be a long process of waiting. And more waiting.

AIDS may have been the number-one priority of the Department of Health and Human Services, he later observed, but it certainly was not a priority for the Office of Management and Budget.

Other controversies continued to distract Brandt. Earlier in May, he had agreed to attend the annual awards dinner of the Fund for Human Dignity, the fund-raising arm of the National Gay Task Force, to present an award to the Blood Sister Project of San Diego. The group had enlisted hundreds of lesbians to donate blood, which was virtually pristine because of the noted dearth of social disease among lesbians. The blood then could be used to help San Diego County AIDS patients. Brandt considered the project a worthy example of the kind of community program called for in President Reagan’s cry for more volunteerism. When a number of conservative “pro-family” groups heard of Brandt’s appearance, however, they inundated the White House with telegrams demanding that Brandt be fired if he went to the dinner.

“We are utterly outraged and appalled at this presentation by Dr. Brandt, who has himself identified AIDS as the number-one priority for the U.S. Public Health Service,” said Gary Curran of the American Life Lobby. “This is an outrageous legitimization of a life-style repugnant to the vast majority of Americans.” Other fundamentalist groups quickly joined in the chorus. The organizations had long been suspicious of Secretary Heckler, whom they considered far too liberal for their tastes. When Brandt met with Heckler to discuss the fracas, she was worried about the political fallout.

“This is going to blow up into a mess,” Heckler said.

“I can smell it already,” Brandt said.

That afternoon, an HHS spokesman announced that Brandt had a meeting to attend the night of the awards dinner. Although “disappointed,” he would not be able to present the award.

On May 31, 1984, the number of Americans killed in the AIDS epidemic surpassed 2,000. But the deaths of the 2,000, and the diagnosis of 2,615 others who now awaited death, had not moved society toward mobilizing its resources against the new epidemic. Even the pleading of the Assistant Secretary for Health would not make much of a difference. What did make a difference began on June 5, 1984, when a man went to his doctor’s office to learn the results of a biopsy. The biopsy had been performed on a pesky purple spot on the fifty-eight-year-old’s neck. The doctor suspected what the spot signified as soon as he saw it. Nevertheless, he waited until the biopsy confirmed the diagnosis before he told Rock Hudson that he was suffering from Kaposi’s sarcoma.

June 1984

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The brightest moments in the first five years of the AIDS epidemic tended to do little more than illuminate how truly dark the future would be. Never was this truth more conspicuous than in the first months after the acceptance of the LAV and HTLV-III viruses as the cause of AIDS. Antibody testing gave researchers their first glimpse into the number of Americans infected with the virus. Past epidemiology could only chart the course of the epidemic through full-blown AIDS cases, which meant in effect that researchers were following routes the virus had traveled several years before. With AIDS antibody testing, scientists learned where the virus was traveling now. This understanding produced a welter of bad news in the summer of 1984.

At the CDC, Don Francis supervised this bleak work at his virology lab. Of 215 men whose blood was drawn recently at the San Francisco venereal disease clinic, 65 percent, or 140, had antibodies to LAV. Moreover, an unsettling proportion of these test subjects already had symptoms of immune problems, most commonly swollen lymph nodes. When local health officials tested blood from 126 subjects who had shown no early signs of either AIDS or ARC, they found that 55 percent were infected with the virus. Although their presence at a VD clinic meant they were more sexually active than the typical San Francisco gay man, that extraordinarily high infection rate meant the virus was already pandemic in the San Francisco gay community and probably other major metropolitan areas as well. Testing of East Coast gay men by Bob Gallo’s lab found that 35 percent had HTLV-III antibodies, while comparable screening in Paris found an 18 percent infection rate.

Testing among people exposed to the virus through blood contact—either through the use of illicit drugs or by transfusion—produced even more depressing results. Of eighty-six intravenous drug users tested from one New York City drug clinic, seventy-five, or 87 percent, were infected with LAV. Tests on twenty-five hemophiliacs with no AIDS symptoms revealed that 72 percent, or eighteen of them, had LAV antibodies. Severe hemophiliacs who used Factor VIII more than once a month demonstrated an even higher infection rate, 90 percent. CDC studies on recipients of blood transfusions from high-risk donors found a similarly high rate of infection. This indicated an exponential increase in future transfusion cases as late-arriving runners from these AIDS marathons approached the finish lines.

The testing also laid to rest lingering doubts about the relationship of AIDS to the unexplained immune abnormalities that were appearing with greater frequency among children of drug abusers. Strict CDC guidelines had long kept many such infants out of official AIDS tallies. Arye Rubinstein was treating 128 patients from the impoverished Bronx for what he considered to be AIDS. The CDC would count only between 10 and 15 percent of these cases as meeting the agency’s requirements for such classification. When Rubinstein ran HTLV-III antibody tests, however, he found that all were infected with the AIDS agent. Such results sparked early calls for the CDC to expand its definition of AIDS. After all, many were dying in New York and San Francisco as an effect of LAV/HTLV-III infection, even though they were never counted as AIDS patients. The CDC, however, resisted.

Antibody testing lent scientists their first insights into the progression of AIDS infection. The gay men studied in the San Francisco hepatitis vaccine research during the 1970s again proved a singularly valuable tool in this research. In June, Don Francis put on his long Johns and ski parka to pull the tubes of blood he had collected from the 6,800 men for vaccine research. He selected 110 blood samples drawn in 1978 and about 50 taken in 1980. Only 1 person in the 1978 study had LAV antibodies, while 25 percent of the group studied two years later were infected. Since then, the infection rate had more than doubled. The retrospective testing bolstered the hypothesis that a new viral agent had appeared among San Francisco gay men in 1976 or 1977 and spread rapidly through the city well before Ken Home first saw the purple lesions on his chest in 1980. Since then, the virus had proliferated even more wildly.

When Dr. Bob Biggar from the NCI returned to Denmark in June to test the gay men he had recruited for his prospective AIDS study in 1981, he was jolted to discover that 9 percent of them already had HTLV-III antibodies. Biggar was particularly distressed because this was not a group of big-city Copenhagen gay men but people from Aarhus, the more remote city north of the great fjord—the city where Grethe Rask once attended medical school. Biggar started advising colleagues that such an infection rate had “horrifying” implications. Although few in his Danish study group had AIDS yet, the San Francisco study confirmed that impressive numbers of cases could lag years behind the first infection with the virus. Other scientists told Biggar that he needed to study larger groups of gay men before he started trumpeting such alarmist declarations.

Biggar’s studies also pointed toward the emerging infection routes. In Denmark, for example, infected gay men tended to be the very men who had visited New York City. In a similar vein, Biggar also found that Danish hemophiliacs who used Factor VIII made in Europe did not have HTLV-III antibodies; the hemophiliacs who were infected with HTLV-III got their Factor VIII from the United States.

Antibody testing in Africa by the Pasteur Institute defined the earliest paths of AIDS transmission. From their testing, the Pasteur researchers estimated that the incidence of AIDS in Zaire was probably on the order of 250 cases per million. This compared to 16 per million people in the United States, the nation with the highest officially reported AIDS cases. Biggar tested blood he drew in the remote Zairian bush country north of Kinshasa and found that 12 percent of local people were infected with HTLV-III. Such statistics led researchers to conclude that AIDS had come from somewhere in Equatorial Africa. Certainly, no one proposed that American gay men had visited that neck of the savannah recently. Such theorizing on AIDS origins, however, made African governments uneasy. As a condition for entering Zaire, authorities demanded that American and European research teams pledge not to release AIDS data.

With no direct links to African governments, Dr. Max Essex was at liberty to hypothesize openly about how AIDS started. His own studies on outbreaks of an AIDS-like disease among research monkeys in both Massachusetts and California had led him into research on Simian AIDS, or SAIDS, and the discovery of STLV-III, or Simian T-lymphotrophic virus. The similarities in proteins between STLV-III and HTLV-III led Essex to believe that AIDS may have been lying dormant in some primate population for thousands of years before being transferred to humans.

Given the abrupt sociological dislocation in equatorial Africa in recent years, the rest of the story was fairly easy to piece together. A remote tribe may have harbored the virus. With the rapid urbanization of this region after colonization, the virus may have only recently reached the major cities, such as Kinshasa. From Africa, the virus jumped to Europe, where AIDS cases were appearing regularly by the late 1970s, and to Haiti, through administrators imported from that island to work in Zaire throughout the 1970s. From Europe and Haiti, the virus quickly made its debut in the United States, returning to Europe in the early 1980s through gay tourists.

For all the insight the antibody testing offered, substantial mysteries remained in mid-1984. The most important question concerned exactly what the presence of HTLV-III antibodies meant. The large number of people infected with the AIDS virus might mean that it was less lethal than scientists had imagined, some researchers hoped. The early prospective studies of people with lymphadenopathy, for example, found that relatively few were developing AIDS. Perhaps, some thought, this meant that ARC was a mild form of AIDS infection, and the worst thing that ARC patients might contract was a hard lymph node and a few dermatological problems. Maybe some of the antibodies could be protective and neutralize the effect of the AIDS virus, other scientists hoped. Although the presence of AIDS antibodies in so many patients indicated that this was not always the case, there was not enough known about the antibodies to draw any definitive conclusions yet.

Substantial debate continued as to whether the AIDS virus—whether LAV or HTLV-III—acted alone or in tandem with another infection to produce AIDS. Again, this could explain why some people infected with the AIDS virus came down with the full-blown disease while others got ARC and many more had no symptoms of malaise. Cytomegalovirus and the Epstein-Barr virus were the most-nominated candidates for AIDS co-factor. Others voted for gastrointestinal parasites.

Against all this uncertainty, Dale Lawrence’s research into AIDS incubation gained a more pressing import. With an average incubation period of 5.5 years, there didn’t have to be many cases in 1984 to substantiate the fatality of the AIDS virus. According to his calculations, because the virus had not invaded the bodies of very many Americans until 1980, the huge number of AIDS cases would not start appearing until late 1985. Still, throughout 1984, the CDC made no effort to reveal Lawrence’s disquieting research.

Lawrence discerned a pattern in this. All along, the agency had routinely delayed making public its new discoveries for at least six months. Other staffers’ work on intravenous drug users and their female sexual partners had encountered such delays. Leading CDC researchers assured journalists that there was “no evidence” that AIDS was an infectious disease even as they prepared the tale of Patient Zero and his clusters for official publication. Warnings about possible heterosexual transmission of AIDS were also stalled, in part because Assistant Secretary for Health Brandt did not believe AIDS could become a heterosexual problem.

Lawrence understood the wisdom of such caution. The agency’s credibility could be undermined if it had a reputation of shooting from the hip on issues of key national health policy. Still, Lawrence was concerned that health officials across the country were relying on estimates of a two-year incubation period to support optimistic analyses that AIDS would reach a plateau soon because of recent changes in gay behavior. Those were not the statistics on which to base intelligent planning, he knew. However, from the day in December 1983 that Lawrence first advised Jim Curran of his research, it was sixteen months before scientists learned this bitter truth about the AIDS virus.

Don Francis knew enough about the vagaries of retroviral incubation to quickly draw some depressing conclusions from the various studies on the prevalence of AIDS virus among the various high-risk groups. Gay men in major urban areas, he could see, stood to be devastated by the epidemic. Hemophiliacs faced decimation. Intravenous drug users would be wiped out in astounding numbers, taking with them their sexual partners and infant children. Equatorial Africans faced death on the scale of the Holocaust. The light at the end of the tunnel was an oncoming train.

Grim prognostications were nothing new to the AIDS epidemic. The new wrinkle for Francis was the scientific rancor between Robert Gallo and the Pasteur Institute over credit for the AIDS virus discovery. Rather than settling the dispute, the HTLV-III announcement had enlarged it, and the fallout was profoundly frustrating Francis’s work at the CDC. Because Gallo remained angry with the CDC for leaking news about LAV on the eve of the Heckler press conference, he was reluctant to provide the CDC with substantial amounts of HTLV-III. A thimbleful of virus had arrived from the NCI in May, but the CDC lab had difficulties culturing it, so Jim Curran requested more.

The CDC knew that plenty of this virus existed. In May, the NCI had sent out 25 liters to the five private pharmaceutical companies who were chosen to manufacture the blood screening test. However, the NCI refused to give the CDC anything but token amounts of HTLV-III. Gallo was convinced that the CDC was not sharing its best specimens with his lab, and he would not cooperate with the CDC as long as he suspected the CDC was not cooperating with him. Not until the end of the year did the NCI relent and finally enter into a purchase agreement with the CDC for 100 liters of HTLV-III.

Gallo was also adamant that the CDC not perform genetic comparisons between HTLV-III and the French LAV. Gallo promised to do his own comparison between HTLV-III and LAV, but the results weren’t forthcoming. Francis knew the comparison could settle whether the two viruses were identical; if identical, it also would settle the question of who discovered the AIDS virus first. Gallo did not want this settled, Francis thought, because it would show he had lost the great viral competition of the twentieth century. Francis anticipated that Gallo would spend a year publishing reams of scientific papers on HTLV-III. Later, when he was internationally recognized as the virus’ discoverer, he would allow that HTLV-III and LAV were the same. Gallo viewed this as part of normal scientific competition; Francis thought it smarmy.

At the Pasteur Institute, French researchers were miffed at being treated as pretenders to the throne, awaiting Bob Gallo’s confirmation that their claim to the coveted discovery was rightful. Internationally, scientists working on AIDS were forced to choose sides between the French and the Americans. Within a week of the announcement, Francis got into a bitter public argument at a scientific conference in France with Dr. William Haseltine, a Harvard researcher aligned with Gallo.