And the Band Played On
As of April 23, 1984, there were 4,177 cases of Acquired Immune Deficiency Syndrome in the United States, the CDC announced that afternoon. Of these, 1,101 had been reported in 1984. The disease had spread to forty-five states. About 20 new cases were reported on every working day. Thus far, 1,807 AIDS deaths had been counted nationally. New York City reported nearly 1,657 cases. That week, the numbers of AIDS cases in San Francisco surpassed 500.
May 4
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
Within days of the HTLV-III announcement, Marc Conant had issued invitations to a high-powered group of health educators, AIDS specialists, and media professionals for a symposium to develop an “AIDS Prevention Media Project.” Supervisor Britt would try to secure city funding for the project.
The gay press, still angry at Conant’s involvement with bathhouse closure in March, counterattacked with a savage character assassination, rehashing Conant’s efforts against the bathhouses. The headline in the Bay Area Reporter announced: “MD’s Plot ‘Behavior Modification’ for Tricking Gays,” and characterized the campaign as an Orwellian conspiracy for thought control. Sensitive to anything that might upset gay voters in an election year, the board of supervisors began wavering on the program.
The prevention program was not the only controversy snaring the mayor in May. The bathhouse issue was stalled, as was the city’s AIDS prevention campaign. Silverman subsequently said he was disappointed with the AIDS education campaign mounted by his department and the San Francisco AIDS Foundation, although he never expressed his reservations in public. He felt he had no choice but to include all the various gay factions in his considerations, aware that any one of the groups would move to sabotage prevention efforts if they felt excluded. As he said later, it was better to have all the Indians inside the tent pissing out than to have them on the outside pissing in.
It was about this time that Steve Del Re, the young man who had so bitterly chastised Conant for wanting to close the baths, appeared in Conant’s office. By now, Conant had heard the rumors about the twenty-seven-year-old’s liaison with Rock Hudson, but Steve hadn’t come to gossip.
“I have this purple spot,” he said.
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.
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES, HUBERT H. HUMPHREY BUILDING, WASHINGTON, D.C.
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 d
etailed 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.
46
DOWNBOUND TRAIN
June 1984
CENTERS FOR DISEASE CONTROL, ATLANTA
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 pe
r 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.