And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (68 page)

On November 21, 1983, the Centers for Disease Control reported that 2,803 Americans had been diagnosed with Acquired Immune Deficiency Syndrome. Of these, 1,146 had died.

November 22

G
ENEVA
, S
WITZERLAND

By the time thirty-eight AIDS experts from around the world gathered at the World Health Organization headquarters in Geneva for the first meeting on the international implications of the AIDS epidemic, the disease had been reported in thirty-three nations on five continents.

Canadian health authorities had logged fifty cases throughout the confederation. Six cases had been reported in Israel in the past year, and four in Australia. On the eve of the conference, Japan had reported its first two AIDS cases, making it the first Asian nation to be touched by the epidemic. The brothels, Turkish baths, and sex parlors in Tokyo’s famed Yushiwara District were refusing entry to foreign visitors for fear that they might spread AIDS. Baths posted signs reading: “Japanese Men Only.”

At the end of 1982, European health authorities had reported 67 cases of AIDS. By the time conference participants gathered in the aluminum-and-glass WHO headquarters, 267 cases were reported in fifteen western European nations. West German epidemiologists were now uncovering their own sexually related clusters of cases. Although early patients could virtually all be linked to sexual activity in the United States, it was clear by late 1983 that Germany now had its own pool of infected men who were spreading the disease. In Denmark, the national health board already had moved to establish specialized clinics and screening centers for the disease. With 27 cases now reported in Great Britain, doctors were clamoring for research money from a conservative prime minister who did not include the epidemic on her list of health priorities.

France reported the highest AIDS caseload on the continent, with 94 diagnosed patients. As in Belgium, more than half of the cases reported were natives or tourists of five African nations—Zaire, Congo, Mali, Gabon, and Rwanda.

French and Belgian research in these Central African nations, particularly Zaire, had recently led NIH and CDC scientists from the United States to Kinshasa. Shortly before the Geneva meeting, Dr. John McCormick had discussed his findings at a meeting of CDC AIDS researchers in Atlanta. In just two weeks, McCormick had confirmed 37 AIDS cases at two hospitals in Kinshasa. The CDC was stunned that McCormick could find so many cases in just two hospitals in so brief a time. The disease was obviously widespread in Africa, although it had not been noticed because of the lack of sophisticated medical care. Searching through hospital records and death certificates, the epidemiologists made an even more disconcerting finding. The disease had killed nearly as many women as men, leading researchers to believe that in these poor Equatorial nations, AIDS was spreading as a heterosexually transmitted disease. The typical female patient was a young unmarried prostitute, while the male victims tended to be the older single men who used them. Nine cases could be linked in two clusters. The epidemiology suggested that, unlike in the United States, where most heterosexually transmitted cases were spread from men to women, AIDS was spreading bi-directionally in Africa, from men to women and from women to men.

The findings were consistent with research in Haiti that found that one-third of the 202 reported Haitian AIDS cases were among women, again suggesting heterosexual transmission routes. The initial routes of the epidemic’s spread became clear by virtue of the link between Haiti and Zaire in the early 1970s, when the African nation imported many better-educated Haitians who, as French-speaking blacks, could take the role of the Belgian colonial administrators who had been expelled. Given the longer history of AIDS in Africa, it appeared that the Haitians had taken AIDS back to the island of Hispaniola at about the same time that the first cases of AIDS, virtually all of which were linked to Central Africa, appeared in Europe.

The WHO conference room overlooked Lake Geneva and a panorama of the Swiss countryside. Delegates gathered around M-shaped tables. Don Francis sat with Marc Conant, with whom he had found a common concern about what lay ahead. Health officials from the Soviet satellite nations of eastern Europe sat across from them, although Czechoslovakia was the only communist nation to concede that AIDS could spread within socialist borders. Throughout the four-day meeting, representatives of the Union of Soviet Socialist Republics stoically insisted otherwise.

“We will not have any of these cases in the Soviet Union,” said a Soviet delegate confidently.

Don Francis couldn’t resist saying to Marc Conant in his loudest stage whisper, “And they won’t, all right.” In a stern Russian accent, Francis continued: “You have AIDS—bang, bang, bang.”

The Soviets were not amused.

The more serious discussion centered on the problem of blood, the one area in which officials felt they could slow the scope of the epidemic. Nine European hemophiliacs had contracted AIDS from Factor VIII manufactured in the United States, including three of the first four Spaniards to be stricken with the syndrome. Most suggestions centered on banning the shipment of blood products from the United States, a move that several European nations already had implemented. But in the Netherlands, the Dutch Red Cross backed off on screening plans in the face of rigorous gay opposition. The British health ministry had countered fear of AIDS in blood by echoing the U.S. blood centers’ claims that there was “no conclusive proof” that the ailment could be transmitted through transfusions.

That night, at a Swiss bistro, Don Francis had dinner with Jim Curran and Ed Brandt.

“What went wrong with AIDS?” Francis asked Brandt bluntly.

“What do you mean?” Brandt asked.

“It seems like we’re always behind in funding,” Francis said. “We’re always piecing things together.”

“Bill [Foege, CDC director] and I thought it was poppers,” Brandt said. “We thought it would be over by now.”

Francis was disbelieving. He played killer racquetball with Foege every week, and he knew that the CDC director had not believed AIDS was caused by poppers since late 1981. That was two years before.

December 1983

W
ARD
5B,
S
AN
F
RANCISCO
G
ENERAL
H
OSPITAL

Chanteuse Sharon McKnight tugged her black-and-white feathered boa over the web of clear plastic tubes threaded into various patients as she stood to examine a light blue hospital gown.

“Love it,” cooed McKnight, a popular cabaret singer. “It looks designer.”

“See the Dior label?” parried the patient, tugging the gown around his neck like a precious mink.

“San Francisco General Hospital,” gushed the entertainer, fingering the gown. “Yes, yes. This is the only place where I like not playing to a full house.”

Everybody laughed, except for the man with the scars from two holes drilled in his head earlier that week. The doctors had tried to find out what bizarre infection had virtually robbed him of his mind. That patient stared straight into space, fidgeting occasionally when McKnight’s boa ran across his leg. The dozen other patients sipped champagne and smiled at the doctors and nurses crowding the AIDS Ward’s largest room for McKnight’s performance. Everyone at San Francisco General knew that the unconventional AIDS Ward was the most entertaining unit in the hospital. Gay nurses took their breaks there, joking with the patients or, sometimes, just quietly holding their hands. Throughout the holiday season, gay volunteer groups tromped through the hallways giving massages, handing out presents, and dishing out gourmet dinners. The extraordinary charity efforts were an aspect of the gay community that didn’t get much press. On this cold drizzly night, Sharon McKnight had rolled her own piano in to sing “Stand By Your Man” to men who would probably never get to a nightclub again, because they all were going to die.

More people died in Ward 5B than in any other ward of the hospital; more diseases raged in a typical 5B patient’s body than could be found in an entire ward in any other part of the hospital. And there were more such patients checking into the hospital every day. In just four months, the ward had had over 100 admissions. The unit was filled to capacity now, and another three patients waited in other wards for transfer to 5B.

The AIDS Ward had created an unheard-of situation at the county hospital: Well-heeled, respectable gay men clamored to get in. To say the least, San Francisco General had suffered more than its share of image problems and was frequently on the brink of losing its accreditation. But the innovations undertaken by AIDS nursing coordinator Cliff Morrison had returned some luster to the hospital’s reputation. Other doctors, convinced that Morrison had political pull with the gay community, deferred to him, giving him leeway to continue his unorthodox approach to health care.

The most recent innovation Morrison instituted concerned visiting privileges in a patient’s final days. Normally, the ailing man’s biological family was given all prerogatives in deciding who saw a patient in the critical care unit. However, an unseemly conflict had arisen recently when one patient’s mother marched into her dying son’s room and ordered out his longtime lover. “I’m his mother and I don’t want any faggots in this room,” she announced brusquely. “And I don’t want any of those nurses who are faggots. They did this to him.”

The patient broke down crying but was unable to speak because he was on a ventilator. A few days later, he died without seeing his lover again.

Morrison announced the new 5B policy: that all patients designate their significant others who would have visiting privileges. As far as Morrison was concerned, the definition of the American family had changed. It should be the right of patients themselves to define their families, not the right of the hospital.

As the months progressed, Ward 5B developed its own rituals. During the days, patients pushed their IV feeders around with them in the hallways and talked to each other about their release dates, like prisoners looking ahead to the day they would be sprung. Conversations sometimes evolved into high camp, eerily punctuated by painfully long coughs that echoed from the rooms of the many PCP patients. At night, amid the humming of the refrigerated blankets that kept the
Pneumocystis
-bred fevers from spiking above 103 degrees, there was only the sound of heavy breathing and, occasionally, the mournful groans of nightmares.

Bruce Schneider was one of the residents of 5B whose recurring nightmare had him fading, dissolving like some phantasm into the air. His friends hovered in the vague distance, asking him: “Bruce, why are you fading away?” He tried to answer, but they didn’t hear; he just continued to fade.

The dream came many times in the two months Bruce was in the hospital. Until August, he had been a regular hardworking guy in the Castro, holding down a weekday job with the phone company and pulling in weekend shifts as a brunch cook. Then, he felt steel bands wrap around his chest, and he had a hard time breathing. The doctors told him he had
Pneumocystis.
Now he lay in the bed at the end of the hall, watching television. And much of what he saw wasn’t relevant to him now—all the commercials about retirement accounts, pension funds, and IRAs, for instance.

A normal thirty-year-old single male like Bruce could expect to live another 43.2 years, according to insurance actuarial tables. But he now knew that, if typical, he would live only ten more months. He felt as though he were on Death Row.

Three doors down from Bruce was Deotis McMather, tossing in the throes of his nightmare. A native of the hills of southern Virginia, Deotis had lived a seamy life in San Francisco, hustling tricks and shooting drugs in the Tenderloin neighborhood. In April, he noticed bruises all over his body. He had no way of knowing that his body had stopped producing blood cells called platelets, which help blood to clot. Instead of clotting, Deotis’s blood began to leak from his capillaries with each bump he suffered. In October, a trick told Deotis that his back was covered with purple spots. When Deotis went to San Francisco General for AIDS tests, his roommate had Deotis’s belongings packed and sent off to a friend’s house with instructions that Deotis should not return. It didn’t matter much because Deotis would never be able to leave the hospital.

A week into his hospital stay, the doctors determined that Deotis had idiopathic thrombocytopenic purpura, a result of his lacking platelets. Because this condition had left a good portion of his abdominal organs inflamed, doctors cut out Deotis’s spleen and part of his liver and stomach. When a newspaper reporter came by to talk, Deotis raised his light blue hospital gown to show him the long, slashing scar, all held together with staples. Deotis was retaining fluids, so the scar looked like a big zipper stretched across his bloated stomach. Deotis smiled as a photographer took a photograph of him holding his gown up. The photo never made it into the paper because an editor thought he’d throw up when he saw it.

Deotis’s nightmare started after his operation. He was running, running hard, among the cold concrete towers in downtown San Francisco. Nobody was on the streets. He was alone except for the policemen chasing him down. Deotis stumbled. The police caught him and started kicking him in the stomach. “Can’t you see I’m sick?” Deotis asked. “Stop.”

But they continued kicking him. He started throwing up. Brown clumps of maggots and crawly worms spewed from his mouth. He was coughing up the maggots when he awakened.

About two weeks after his operation, Deotis’s already melancholy disposition turned grim. He started telling nurses that he didn’t want to be a drain on people. His condition deteriorated when his lungs started filling with fluid. He was put on a respirator, but after a few days, he asked to be taken off the machine. Within an hour, twenty-seven-year-old Deotis McMather was dead. He was one of three patients on 5B who died that day.

Such stories helped convince the nurses on the AIDS Ward that the will to live was not fantasy but was probably the single most influential factor in determining how long patients survived. People who decided it was time to die, very often did; the young men who fought the disease, often lived longer. Bruce Schneider talked a lot about fighting in December 1983. Maybe he’d get that silver bullet, or that “reprieve from the governor,” as he called it. Something was bound to come along soon, he figured. He’d read in the paper that the Reagan administration was calling AIDS its number-one health priority. Maybe soon it would all be over, and he’d get back to those carefree picnics in the Marin countryside and long walks in the Redwoods he liked so much.

December 6

C
APITOL
,
W
ASHINGTON
, D.C.

NEWS RELEASE
H
OUSE
R
EPORT
D
OCUMENTS
I
NADEQUATE
R
ESPONSE TO
AIDS

The Department of Health and Human Services has failed to adequately fund Federal efforts to fight the Acquired Immunodeficiency Syndrome (AIDS) epidemic, according to a report prepared by the Intergovernmental Relations and Human Resources Subcommittee chaired by Representative Ted Weiss (D-NY).

…The subcommittee investigation revealed that despite Administration claims that sufficient funds were being spent on AIDS, important surveillance, epidemiological studies, and laboratory research at CDC and NIH were undermined because of inadequate resources.

“Tragically, funding levels for AIDS investigations have been dictated by political considerations rather than by the professional judgments of scientists and public health officials who are waging the battle against the epidemic,” said Weiss. “The inadequacy of funding, coupled with inexcusable delays in research activity, leads me to question the Federal Government’s preparedness for national health emergencies, as well as this Administration’s commitment to an urgent resolution to the AIDS crisis.

The subcommittee’s thirty-six-page report, “The Federal Response to AIDS,” accompanied the shorter press release announcing the subcommittee’s findings. It was never clear how many reporters read anything other than the press release, since few news organizations proved very interested in the story. There was a
New York Times
story and a shorter wire service piece that included press release quotes and the administration’s ritual denial.

The lack of attention was unfortunate because the report marked the only comprehensive investigation of federal AIDS policy yet undertaken by anybody. The months of poring through CDC files had produced a highly detailed summary of every problem the CDC, NIH, and extramural researchers had faced in their attempts to secure an adequate response to the epidemic. Many of Don Francis’s memos were on the report’s pages, as well as other memoranda written at the ascending levels of the health bureaucracy during the course of the epidemic.

Probably the most startling revelation was the continued absence of any coordinated plan for attacking AIDS, even at this time in late 1983. After months of pressure, the Department of Health and Human Services had submitted a six-page document to the subcommittee in late October. The congressional report, however, had little praise for this effort.

“The so-called ‘operational plan’ is, on its face, a document created for the subcommittee, and serves only to highlight the lack of comprehensive planning and budgeting by the PHS in response to AIDS,” the report said. “It provides no specific information about future research and surveillance plans. It barely mentions, if at all, HHS strategy, timetables, contingency plans, and vehicles for evaluating the Government’s activity. Essentially, the plan submitted by HHS is an abbreviated fact sheet about past activities, rather than a program for dealing with the Nation’s ‘number-one health priority.’”

To prevent similar problems with other health emergencies, the report recommended funding of the Public Health Emergency Fund. The subcommittee also recommended procedures to expedite NIH resources during emergencies. As for the specific problem of AIDS, the subcommittee recommended that the federal government establish an independent commission to both recommend a comprehensive strategy to fight AIDS and suggest resources necessary to carry out the battle.

“The committee believes that PHS researchers and physicians are eminently qualified to plan and conduct the nation’s response to health emergencies, including AIDS,” the report concluded. “At the same time, these scientists are subjected to severe political and fiscal constraints especially in times of shrinking federal budgets for public health programs. Unfortunately, the lives of countless Americans may be jeopardized when the scope of AIDS research and surveillance is dictated by budget considerations rather than the professional judgments of public health and medical experts.”

As was now common in matters of AIDS policy, support and opposition to the unusually hard-hitting report fell along party lines. Ten of the subcommittee’s fourteen Republican members added their dissenting opinion to the report, calling it “misleading” and denouncing the idea of an independent panel to review AIDS strategy as “unnecessary.” The Republican members wrote, “The PHS already has the responsibility and expertise to develop the proposed plan.”

Dr. Edward Brandt accurately noted to reporters that the president had never vetoed congressional efforts to add AIDS funds. “By the time I put a request in and it goes through all the processes, Congress passes the money,” he said. “The administration has never taken the position to fight congressional moves for more money. We have spent all the dollars made available to us.” As for extramural funding delays, Brandt conceded, “I wouldn’t argue that we’re perfect and we haven’t made some mistakes, but our efforts have been comprehensive and responsible.” The criticism of early sluggishness was so much Monday-morning quarterbacking, he said, and was the product of “the 20/20 vision of hindsight.”