by Randy Shilts
“He was back in the hospital last week for tests for cryptococcal meningitis, which were negative,” said Matt.
“I don’t believe it!” said Susan.
“He’s going to die,” he said.
“I don’t believe it!” she said.
“If he lives a year, it will be a miracle.”
“I don’t believe it!” she said.
“We’re very close,” Matt continued, wishing his sister would say something else. “We’re closer than ever. Not in a sexual romantic way. But we’re going through this together. We talk about all of it very openly. I can’t believe Mother or Mary didn’t tell you.”
“Maybe they haven’t known for long,” offered Susan.
“They’ve known for months.”
“Maybe they didn’t think it was serious.”
“They know it’s serious,” he said. “It’s another way of invalidating my relationships. If it had been a girlfriend, or even an ex-girlfriend, you would have heard about it.”
“You’re right,” said his sister softly.
“Straight folks don’t think enough of my friendships and relationships to talk about them,” Matt continued. “That’s why I sometimes get angry and keep my distance from straight folks, even if they’re my family.”
“I’m sorry,” Sue said. “I really am sorry. I had no idea.”
August 14
PERTH, AUSTRALIA
Cleve Jones’s camera bag bulged with snapshots of boyfriends he had courted in Florence and Mykonos, Athens and Bangkok. On the flight from Bali to Perth, Cleve had met a group of Australian gay men. Already, in his sixth week away from San Francisco, Cleve was planning to help them put together their own AIDS help-line, based on the model he had developed in San Francisco. They’ve got the chance to do it right from the start, he exclaimed to himself. Cleve’s heart sank when he stepped into a men’s room at the Perth airport and saw the graffiti over the urinal. “GAYS,” it read, “Got AIDS Yet Sucker?”
The next day, the Centers for Disease Control released figures showing that the nation’s AIDS caseload had exceeded 2,000. As of August 15, 2,094 AIDS cases had been reported to Atlanta; of these, 805 had died.
August 17
CABRINI MEDICAL CENTER, NEW YORK CITY
To ease AIDS hysteria, Secretary of Health and Human Services Margaret Heckler wanted to be seen taking the hand of an AIDS victim, touching him. For a week, her aides scoured New York City hospitals for the ideal site for this photo opportunity. A dozen hospitals were approached but declined to participate, because they saw the press conference as a cynical attempt to create the illusion of action on the part of an otherwise inactive federal government. With the highest number of AIDS patients of any hospital in the nation, Bellevue would have been ideal. However, hospital administrators insisted that Heckler wear a mask and gown before she step into an AIDS victim’s room. Such a picture, Heckler thought, would do more to inflame hysteria than quell it. The appropriate bedside was found at Cabrini.
Heckler used the hospital visit to announce that President Reagan would ask Congress for an extra $22 million for AIDS funding for the upcoming fiscal year, more than doubling the planned allocation of $17 million. Despite Assistant Secretary Ed Brandt’s pleas, the money was not in new funds but in appropriations already designated for existing health programs—in this case, mostly pirated from the National Health Service Corps and the Rural Development Fund of the Office of Community Services. Heckler said that the new funding proposal was being submitted because AIDS researchers wanted more money. “If they feel they need more, I will submit the request to Congress,” she said.
In Washington, Congressional aide, Tim Westmoreland watched the televised coverage and gave Heckler points for being an excellent publicist for the administration, even if she was not a distinguished administrator.
Like a handful of other Washington insiders, however, Westmoreland knew the truth about the proposal, which had nothing to do with whether AIDS researchers wanted it. Already, in secret session, a subcommittee of the House Appropriations Committee had approved a $40 million appropriation for AIDS research for the next year. Given the mood in Congress, nobody doubted die money would be passed. Even Republicans were taken aback by the nickel and diming at the Office of Management and Budget over AIDS. The vote was supposed to be kept confidential until the entire budget went before the full appropriations committee. However, Reagan loyalists had leaked the news to the White House, where an inevitable allocation was transformed into a public relations coup for Secretary Heckler. This was how AIDS policy was conducted in the summer of 1983.
What few people outside the Public Health Service knew was that Heckler’s request was still $13 million less than Dr. Brandt had requested a few weeks earlier. That proposal had been deep-sixed by the budget people.
That Day
SETON MEDICAL CENTER, DALY CITY, CALIFORNIA
Frances Borchelt had been born in the Excelsior District in San Francisco with “the caul,” meaning that she had the second sight, according to the Slavic traditions of her immigrant family. As a small child, Frances wore around her neck the remnants of the caul that the midwife had carefully sewn together on the day of her birth. It would bring her luck, although Frances always complained that all her luck was bad. Still, she did have uncanny precognition. Bob Borchelt had noticed it not long after he married Frances and the pair moved into a home on Dublin Street, four blocks from the house where she was born. Whenever the phone rang, the Borchelt’s children got in the habit of asking Frances who it was before they’d answer. Frances always seemed to know who was calling.
The one trait that overshadowed Frances’s sixth sense was her fastidiousness. She was always cleaning. Every morning she’d dust. It seemed she washed her hands twenty times a day. Frances’s younger daughter Cathy joked that they’d bury her with a can of Mop ’n Glow. When pressed, Frances admitted she was just one of those people who didn’t like the idea of germs.
At about the same time that Secretary Margaret Heckler was stepping into her limousine to drive away from her press conference at Cabrini Medical Center, a doctor walked into the suburban San Francisco hospital waiting room where Bob Borchelt and his four children waited for news of their mother’s hip replacement operation. The doctor declared the surgery a success. The family was relieved. Nobody could remember the last time Frances was ever sick with anything, but she was a seventy-one-year-old woman, they knew, and any surgery, however routine, could be risky.
A few days later, Frances Borchelt was her old feisty self and fell into a fierce argument with a niece. A doctor had wanted to give her a blood transfusion, she complained.
“I told them I don’t want one,” she said.
Her niece argued that doctors knew what was best, and she should pay attention to them. As usual, Frances was obdurate and could not be budged.
“I won’t let them give me a blood transfusion and that’s final,” she said. “They can give me iron pills if they want my blood better.”
At the time, her family figured the obstinance stemmed from a lifetime as a clean freak. She couldn’t adjust to the idea of somebody else’s blood in her; no telling where it had been, she’d say. Later, however, the family would recall the argument and talk about the caul.
Frances did not know that loss of blood during her surgery had required the transfusion of two pints of blood. The third unit, doctors said, was transfused as a precaution. It was this last unit that had been donated by the young man two weeks before—the man who did not fill out his donor deferral card properly.
36
SCIENCE
August 25, 1983
CENTERS FOR DISEASE CONTROL, ATLANTA
Eager to form a top-rate retrovirus lab at the CDC, Dr. Don Francis had recruited a retrovirologist from Robert Gallo’s lab at the National Cancer Institute, Dr. V. S. Kalyanaraman. Kaly, as everybody called him, most recently had achieved notice for his discovery of HTLV-II, the second va
riant of the Human T-cell Leukemia virus, which Gallo had discovered in 1980. Long frustrated in Gallo’s large Bethesda laboratory, Kaly looked forward to working on a smaller team, where he would have greater responsibility. He also hoped he would leave Bethesda with the blessing of his mentor, Dr. Gallo, figuring his success at tracking an AIDS virus at the CDC would be only to the greater glory of Bob Gallo.
That, however, was not how Dr. Gallo saw it. When cajoling did not persuade Kaly to stay in Bethesda, Gallo resorted to threats: He would not let his researcher take any reagents to any retrovirus from his NCI lab to the CDC. He’d have to culture his own viruses and antibodies, Gallo said. Meanwhile, Don Francis heard in early August that Gallo had asked top officials at the National Cancer Institute to stop the CDC from hiring the younger researcher. By this morning in late August, Gallo knew these efforts would not succeed, and he phoned Don Francis directly.
AIDS research was “at a crossroads,” Gallo said, so there was no need for the CDC to launch its own retrovirus research. It was a “duplication of government expenditures.”
When this tact failed, Gallo pushed harder.
“There’s no way we will collaborate with you,” said Gallo, saying he saw “no evidence of CDC goodwill” toward the National Cancer Institute.
For that reason, he would not release reagents or antibodies to the HTLV virus.
“Kaly will get nothing,” he said. “You ain’t ever going to have any retroviruses.”
The battle with Bob Gallo came as an unwelcome distraction for Don Francis but was no surprise. Gallo already suspected that the CDC was not sending him their best specimens for analysis. He had voiced the fear to a number of close colleagues that the CDC was plotting to find the cause of AIDS themselves and then “run without me,” meaning Gallo would get no credit.
Feuding between the National Cancer Institute and the National Institute for Allergy and Infectious Diseases also had assumed legendary proportions. The NCI claimed primacy in AIDS research because it had staked the territory first, back when AIDS most commonly appeared as skin cancer. Although the NIAID only recently had demonstrated much interest in the epidemic, it now had asserted that it should carry the dominant role in AIDS research because the syndrome was an infectious disease.
Bob Gallo had also drawn battle lines with the French retrovirologists at the Pasteur Institute and their virus, LAV. “The European press is full of the French have the cause,” Gallo complained to Don Francis. He worried that if they were later disproved, he would look bad because he had reviewed the first LAV paper that was published in Science, in May 1983.
Gallo also worried that the French would be proved right, and he would not get the credit for discovering the AIDS agent. Some researchers later said that Gallo privately spread word among scientists that the French isolates were not a new virus at all but a contaminant. Gallo himself later denied ever saying this, noting, accurately, that he was among the reviewers who had approved the first French article on LAV to be published. In various calls, Gallo warned Francis away from working with any other researchers, particularly the French. “Don’t form tertiary relationships,” Gallo told Francis. “Keep me in a prime relationship with AIDS and cherish the goodwill.”
Don Francis had spent the summer trying to grow the virus in anything he could think of, including cells from the blood of newborn infants and cells from bat lung, monkey kidney, and dog thymus. He had ordered the French-discovered LAV from Paris, but it had not arrived. Gallo still thought that HTLV-I caused AIDS, outlining all the evidence in a long memo to NCI officials in early August, but that didn’t make any sense to Francis. The AIDS virus did not cause the multiplication of infected lymphocytes; it heralded their mass destruction. It didn’t act like a leukemia virus. Moreover, the HTLV focus assay was extremely time consuming. Each demonstration of cellular infection took about three months to do, and after each culture the researchers came up empty-handed, i.e., without virus. Dr. Walter Dowdle, Chief of the Center for Infectious Diseases, worried that the CDC had put too much emphasis on the retroviral hypothesis, leaving the Center barking up the wrong virological tree. Francis counted on Kaly’s expertise on retroviruses and HTLV to help make the lab investment pay off.
At the NCI, Kaly was dejected at the bitter turn his seven-year relationship with Gallo had taken. The job at CDC was a marriage, Kaly thought, but Gallo was family.
Kaly had been born to a poor family in India on Victory Europe Day, 1945. He had come to the United States on a fellowship and enlisted in the war on cancer’s push to isolate cancer-related viruses in the 1970s. He had worked in Gallo’s lab since 1976. Recently, Kaly had been working with AIDS. Like Gallo, he was frustrated by the inability to propagate the virus. He remained excited about AIDS research and viewed his tenure with Gallo as the tree from which he would branch out. Now, he felt Gallo was treating his staff like flunkies: Once in, they could never leave. Even when it was clear that Kaly intended to depart, despite the doctor’s protestations, Bob Gallo pressed on with his strategy of intimidation.
The annual International Congress of Immunology met in Kyoto that August. The CDC’s Dr. Dale Lawrence could see the AIDS epidemic had piqued the curiosity of the world’s immune experts as had few problems before. Although the organizers of the Japan conference were reluctant to sponsor a special session on AIDS, Lawrence insisted, and the turnout was so large that the AIDS meeting had to be moved from a modest conference room to the largest auditorium on the site. However, in private discussions, when Lawrence flatly stated that within a few years 20,000 AIDS cases would be diagnosed in the United States alone, he was greeted with blank stares. Few among these leading world experts, he thought, had yet grasped the enormity of what was unfolding.
The same day that Bob Gallo had called Don Francis, pledging to withhold NCI cooperation from CDC AIDS research, the tale of the University of California’s withholding funds appeared in the San Francisco Chronicle. Dr. Art Ammann, an eminent pediatric immunologist, was one of the handful of doctors with the courage to go public, saying AIDS researchers were being punished for committing a “bureaucratic offense” against the university hierarchy. Dr. Marc Conant infuriated university officials by leaking the memo that described the serious public relations consequences of further university delay. By now, of course, all the AIDS researchers in the UC system suffered from lack of funds. Dr. Jay Levy still could not buy the ultracentrifuge his retrovirus lab needed, stalling his search for an AIDS virus.
For the record, the medical school dean stoutly told reporters that he now saw that the AIDS money needed to be expedited and that he would get the money freed if he had “to walk across the Bay Bridge to Berkeley” and force administrators to do it. Once the reporters’ backs were turned, however, the dean told colleagues he had been misquoted. There would be no speedup in the release of funds.
Indeed, the university held on to the money for another three months, and then the funds went largely to the scientists for whom they were originally intended. There was one exception, however. Dr. Art Ammann was cut out of the AIDS money entirely. Ammann was the doctor who had first alerted the nation to the threat of AIDS in the blood supply in December 1982. His actions probably resulted in the saving of many lives, but saving lives was not the criteria upon which university officials based their decisions. Before long, Ammann made plans to leave the university for work in the private sector. That was how the science of AIDS unfolded in August 1983.
August 27
35 ALPINE TERRACE, SAN FRANCISCO
While he washed Gary Walsh’s dishes, Matt Krieger talked to Gary about their Family Portrait project. It was a book idea promoting the concept of the chosen family, as opposed to the biological family. For many gay people, friends often were closer than brothers and sisters, and Gary wanted to demonstrate this new family theory in a book with pictures of his chosen family, including Matt, Lu Chaikin, and Gary’s nephew, Rick Walsh.
“Are you still excited about the p
roject?” asked Matt.
After a long hesitation from the bedroom, Matt heard a weak, “Yeah.”
Matt walked into Gary’s comfortable bedroom and put his arms around him, holding his frail body close.
“It’s just that I know I’ll never see it,” Gary said. “I won’t be here when it’s published.”
“But you might be,” said Matt. “Can’t we still hope for miracles?”
“We can hope, but I know I’m dying.”
Matt asked whether Gary actually felt death physically, or was just intellectually weighing his chances of survival.
“I can feel it in my body,” said Gary. “I can feel the increasing weakness, and it’s almost like I can feel the cells dying…this morning I felt so horrible, I thought I was dying today.”
According to figures released August 29, 1983, by the Centers for Disease Control, 2,224 Americans were stricken with AIDS, of whom 891 had died.
Frances Borchelt was released from Seton Medical Center in the San Francisco suburb of Daly City on August 30. Although the doctors said the surgery was successful, Frances still had not regained her strength from the operation. She was weak, running continuous, unexplained fevers. She was released from the hospital with a temperature of 100 degrees. Once home, she was so fatigued that she was incapable of performing the exercises necessary to regain use of her new hip. The family doctor advised Bob Borchelt to watch his wife for a few days and report her condition.
It was during this anxious time that the bill for Frances’s operation arrived from the hospital. Because Medicare did not pay for blood transfusions, the cost of three units of blood from Irwin Memorial Blood Bank was included on the invoice. That was how the Borchelt family learned about their mother’s blood transfusion.