by Randy Shilts
While the New York City testing ban eliminated the possibility of abuses, it also denied the test to people who might want to take it for a personal reason. A number of gay doctors were stunned. They had looked forward to the test for its possible use on ailing patients who appeared to have bizarre manifestations of ARC. An antibody test would steer them toward immune dysfunctions, while a negative result might guide them toward other non-AIDS diagnoses. There was also the question of women with a history of drug abuse considering having children. A child born to an infected woman would most likely be infected with the AIDS virus and suffer the fate of those lonely infants who were born to die. The value of the test was incalculable in such cases, but doctors were denied its use for their patients because a handful of gay AIDS activists and political leaders had persuaded the health commissioner to ban the test for political reasons.
It was an ironic policy for a group of people who had based their entire AIDS activism, whether on issues of bathhouses or education, on the idea of “informed choice.” Critics noted that gay leaders seemed to favor informed choice when the choices gay people made coincided with what the elite thought proper.
Perhaps the most amazing aspect of Dr. Sencer’s order was that it was completely ignored in the local press. Even while papers ran extensive stories on the future implications of the antibody test, they characteristically ignored its significance for local public policy. For the next six months, the only mainstream newspaper in which Sencer’s unusual policy was reported was, once again, not in New York but in San Francisco.
California’s legislation on antibody testing, meanwhile, soon became the national model. Larry Bush, a gay journalist who was keenly aware of the meaning that testing would have for years to come, circulated the legislation throughout the country in an attempt to get other states to consider similar proposals. In time, Wisconsin and Florida followed suit, but Bush found New York Governor Mario Cuomo uninterested. Ultimately, it was conservative Orrin Hatch, the Mormon senator from Utah, who became the legislation’s chief proponent, handing it around to other legislators as an example of what ought to be done everywhere. Hatch saw the wisdom of testing and realized voluntary testing of gay men wouldn’t work unless they could be assured that it would not destroy their lives. It was this commonsense approach to the legislation that informed Bush again that attentiveness to the AIDS issue was not determined by whether one was liberal or conservative, but by whether one did or didn’t care about the public health.
SAN FRANCISCO CHRONICLE, SAN FRANCISCO
“My wife was at the hairdresser, and her hairdresser said that just a day ago the wife of a big shot at UC Med Center was in getting a tint, and her husband said that he heard that a big movie star was getting treated there.”
“For…?”
“…For AIDS.”
The reporter had heard this before. This was the fifth call he had received in the past hour on this very subject.
“And the big star was Burt Reynolds, right?”
“You’ve already heard?”
In years, no rumor had seized San Francisco like the gossip that Burt Reynolds, the muy macho star of countless B-films, was suffering from AIDS and languishing at either UC Med Center or San Francisco General Hospital. Some gossips went so far as to suggest from whom he had contracted the disease, and everybody had a different version of the ruse he was using to conceal his identity. The most popular was that he wasn’t wearing his toupee.
At one point, both San Francisco dailies and three of the four local television news stations were trying to track down the rumors. What made the story so irresistible, many agreed privately, was that Reynolds was so masculine. The notion that he might have AIDS tickled the archetypal view of sex roles that lurked in everybody’s subconscious. “This is butch Burt Reynolds, not Liberace,” said one television assignment editor at the time, unaware of the irony that history would confer on the appraisal.
AIDS rumors about President Reagan’s son, Ron, Jr., also were floating around. And a lot of gay “Dynasty” aficionados noted with raised eyebrows that Rock Hudson certainly had been dropping weight lately. The hearsay about Reynolds, however, got the most circulation in San Francisco, Hollywood, and New York. By early March, Reynolds’s press spokesman was issuing heated denials that the star had AIDS. The appearance of Reynolds on the Universal lot in Burbank briefly calmed the gossip, although many in San Francisco’s gay community were reluctant to let go of the idea, convinced that the epidemic would not gain the serious attention of the press and the federal government unless it hit somebody famous.
“I don’t want to hear that it’s not true,” confided Allen White, a columnist for a local gay newspaper. White was not alluding to Reynolds’s health but to the social dynamics a celebrity AIDS case would create. “If we are to survive, we need it to be true.”
By now, the epidemic had slain many prominent people, but to the bitter end, the victims remained so embarrassed about having this homosexual disease that they did not acknowledge their ailment. Doctors cooperated and concealed the truth through the falsification of death certificates.
In an eloquent editorial in Advertising Age, editor-at-large James Brady wrote, “I am tired of compiling lists of the dead. They are actors and writers and designers and dancers and editors and retailers and decorators and sometimes when you see their names in the obituary pages of the [New York] Times you think, yes, I knew that fellow…. The dead are homosexuals who have contracted and will perish from AIDS. Almost everyone who knew them knows this, but there is a gentle, loving conspiracy of silence to deny reality…. Men are dying and we in the press cough politely and draw curtains of discretion across the truth. Don’t hurt anyone. Protect a name, a family, a reputation. A memory. So we write white lies about the cause of death…. Can lies be a cause of death?”
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
Marc Conant felt on the ropes throughout March. The National Kaposi’s Sarcoma/AIDS Foundation, which he had once hoped would be an American Cancer Society for AIDS, was defunct now for lack of interest. He was stripped of his title as director of the AIDS Clinical Research Center, and the frequent criticism in gay newspapers had robbed him of whatever influence he could exert in the gay community. His private practice as one of San Francisco’s leading AIDS doctors also brought little respite.
In March, Conant’s bubbly young receptionist, Jim Sheridan, told Conant he couldn’t come to work because he was having a hard time breathing. Jim Sheridan had been a computer wizard a few years back when his lover died of Pneumocystis. Jim had dropped his promising career to study medicine and had raced through his first years of medical school, working part-time in Conant’s office, where he was an irrepressibly cheerful presence.
And now he had Pneumocystis too. He told Conant he would refuse treatment. “I’ve seen how these people die,” he said. “I’m not going to go through what I’ve seen them go through. If I have this, I want to die quickly.”
Marc Conant and Jim’s sister finally persuaded the thirty-two-year-old to at least check into UCSF hospital, and his condition seemed to improve. The recuperation cheered Conant significantly, and early one morning Conant bounced into Jim’s hospital room on the way to his office to share his good mood.
When Conant opened the door, however, he noticed that the bed was stripped down and all the linens were stuffed into a hamper. Shrouded in a black plastic body bag, Conant could make out the form of young Jim Sheridan.
Conant had spent most of the past four years warning people about the death that would come, but now he realized it had been very intellectual. The reality of death was now starkly sketched out before him, like a Japanese ink drawing. Dawn was breaking over the wooded hillside outside the hospital window, and against this backdrop was the silhouette of another young man in a body bag. Marc Conant was not thinking of the future now; he was feeling the future, and for the first time in years, he wanted to cry.
March 23
DON FRANCIS’S JOURNAL
It’s 5:00 A.M. I’ve been up since 4:00 with my AIDS insomnia which has been so frequent over the past two years. This morning, instead of working on my endless in-box, memos, or manuscripts, I read the S.F. Chronicle’s special AIDS issue. It sent me into a flood of tears and sobs with its portrayal of Felix Munoz, a young idealistic lawyer with much in common with me—undergraduate at Berkeley, grad degree from Harvard. Such a good man he must have been—now dead because he was gay. The article outlines in small pieces the incredible personal, local and national tragedy of AIDS. I sympathize and am angered by each….
What have we done to stop this horrible scourge? Much less than we should. We saw it coming. It was in mid-1982 that some of us used to dealing with transmissible diseases saw it coming. Why then has it been so difficult to get a control program out to the local level? It is complex and I can’t understand all of it. If I had to blame one thing it would be the hunger for power. Somewhere in our pursuit of understanding AIDS, we have failed to turn the corner, to realize that we did understand it, and do something about it. I blame most the Washington hierarchy who cared more about reading the scientific discoveries as political wares than public health breakthroughs…. I also blame the lack of vision on the CDC, but much of this is due to the same Washingtonians who squelch any new proposal to prevent disease…. And the Felix Munozes keep on dying.
Within a week, the number of the nation’s AIDS cases surpassed 9,000. Of these, more than 4,300 had died.
PARIS
Like most European health officials, French authorities viewed AIDS as an American problem, one that fundamentally did not affect them. The government devoted little attention to AIDS research, and when the Pasteur Institute devised its own LAV antibody test kits, authorities made no move to require their use in blood banks.
Faced with what he considered to be unconscionable denial, Dr. Jacques Leibowitch started screening a random sampling of Parisians. Tests on 7,500 revealed that 1 in 200 were infected with the AIDS virus. By his estimate, hospitals were infecting about 50 people a week in Paris alone, and the flamboyant scientist gave a press conference saying so. Only then did the government announce that it would require testing of donated blood.
April 1985
SAN FRANCISCO
Cathy Borchelt was watching the television news when she saw the president of Irwin Memorial Blood Bank tell a press conference that the blood bank expected seventy-two local transfusion AIDS cases in coming years.
“What about one in a million?” she asked.
Indeed, the first month of blood testing in San Francisco and across the nation indicated that there was, of course, substantially more than a one-in-a-million chance of getting AIDS from a blood transfusion, even in mid-1985. A dozen of 5,300 units of blood donated at Irwin during March were infected with AIDS, meaning that chances of getting infected from a transfusion in San Francisco were about 1 in 440 at the time testing was instituted.
The American Red Cross similarly reported that, nationally, 1 in 500 donors tested positive for the AIDS virus. This certainly indicated that gay men were not going en masse to donate blood and that self-deferral drives were largely successful, but it also boded poorly for the future. Given the millions of Americans who had been transfused in recent years, it was clear that even a l-in-500 infection rate would mean thousands of deaths. Later retrospective screening, for example, showed that in just the final weeks before the HTLV-III test went into use, 150 infected donors had given blood that was put into the veins of 200 people. An Irwin press release underscored the tragedy by starkly announcing on April 2 that four new transfusion AIDS cases from Irwin blood were reported in the month of March. Most significantly, none of the cases, Irwin reported, came from transfusions administered after the blood bank started hepatitis B core antibody testing in May 1984.
By now, the Borchelt family’s lawyers were preparing a suit against Irwin. Unlike previous lawsuits by aggrieved families of transfusion AIDS victims, the Borchelt suit did not claim product liability, a charge from which blood banks were legally insulated by special legislation. Instead, the lawsuit claimed negligence, saying the blood industry was negligent in not moving to do something about AIDS even after it was aware of the problem. The legal briefs traced the history of public policy on AIDS, back to the January 1983 meeting in Atlanta when Don Francis banged his fist on a table and asked, “How many people are going to have to die before we do something?” Now that it was clear that Frances Borchelt was among those who would die, the family wanted restitution.
Frances Borchelt was embarrassed and angry when she saw her name in the newspaper story about the lawsuit. Cathy, however, pressed on, reading everything she could about the epidemic. In April, watching a PBS “Nova” show on AIDS, she saw somebody talk about the early cases of hemophiliacs in the spring of 1982, and she learned that the nation’s first transfusion AIDS case was detected in San Francisco months later. Cathy was outraged.
“They knew you could get AIDS from blood in 1982!” she said to anyone who would listen. “Why didn’t they do anything?”
Sharon Johnson recognized Bill Kraus’s voice on the phone right away. He had just awakened from another nightmare.
In the dream, Bill was walking through a graveyard when bony hands started coming up from the earth, latching onto the cuffs of his pants, grasping for his ankles, trying to pull him into the ground. Bill started to run, past the gravestones and toward safety, but ghostly forms arose from the graves and chased him, and the hands continued to pull at him.
“Meditate,” Sharon said. “Start thinking of a safe place. I’m here with you.”
Slowly, Sharon pulled Bill out of his hysteria.
Bill explained that the doctors were thinking of changing his medication. He didn’t know what that would mean, and he was afraid. He was also afraid that when he returned to San Francisco, if he ever returned, his friends would abandon him. Everybody whom he had ever loved had abandoned him, he said. He didn’t want to be alone again. He felt so alone in Paris.
55
AWAKENING
April 14, 1985
ROOM 304, WORLD CONGRESS CENTER, ATLANTA
“Don Francis is a Nazi.”
The words passed confidently from one gay leader to another as they nodded in disgust at the CDC virologist who was participating in a panel on whether gay men should take the antibody test. The hallways outside the conference room were filling with 2,000 scientists and health authorities who were registering for the first International Conference on Acquired Immunodeficiency Syndrome. Although the conference was not slated to begin until the next day, gay participants had scheduled their own meeting for this Sunday afternoon to discuss issues geared toward their community. This included a panel on the preeminent issue—the Test.
Gay panel participants entertained the audience with different reasons as to why they should all agree to oppose the antibody test. And then Don Francis spoke, summing up his thinking with two lines and two circles.
The two lines fell across each other like the cross of St. Andrew. The line sloping downward represented the overall reduction in the number of sexual contacts that most gay men had accomplished as part of the dramatic sexual counterrevolution that had seized the gay community over the past two years. That development was hopeful. However, the upward slope of the second line, representing the dramatically increased prevalence of the virus among gay men, showed why this was not good enough to save homosexual men from biological obsolescence. Reducing sexual contacts by one-half, Francis explained, was not enough if the people with whom a gay man had sex were four times as likely to infect him with the AIDS virus. The person would still have twice the chance of getting infected that he had had two years before, Francis said. Gay men were playing the AIDS lottery less often, Francis said, but when they did play, they had a far greater chance of coming across a losing ticket.
Handing out pamphlets that advised gay men to reduce their
partners was important, but it was not enough, Francis said. Data from the San Francisco hepatitis study showed that gay men were still out there getting infected with the AIDS virus. The gay community needed to start thinking about control.
Francis drew his two circles. One circle represented men infected with the AIDS virus; the other, men who weren’t. The point of AIDS control efforts, he said, should be to make sure that everybody knows into which circle they fit. They should be tested, he said. People who are infected with the AIDS virus should only go to bed with people who are infected; people who aren’t infected should only have sex with other people whom they know to be uninfected. He was not recommending mandatory testing, Francis stressed, and he believed civil rights guarantees needed to be in place to encourage people to be tested. Ultimately, however, the tough choice would have to be made. The two circles should be separate, Francis warned, or tens of thousands would die unnecessarily.
“I’ve seen a lot of viruses in my day, and I’ve come to develop a profound respect for this one,” Francis concluded. “There aren’t very many viruses in the history of man that kill one-tenth of the people they infect. We need to start thinking about controlling this one.”
Francis’s call to action stunned and outraged the gay audience. Nothing proved more unsettling than the word “control.” “Control, control, control,” muttered the AIDS writer for the New York Native. “It’s so fascistic, the idea of putting people in circles and talking about control.”