And the Band Played On
At the CDC’s hepatitis labs in Phoenix, Dr. Don Francis filed another memo asking for money to fund basic laboratory research. He talked up the $198,301 request as much as he could, prodding the CDC chieftains to make a quick decision. The virus was there, lurking about AIDS victims’ blood, he was sure. All he needed was the basic equipment. No answer was forthcoming from Atlanta.
The only glimmer of good news for government funding broke in October when the National Cancer Institute announced it was taking applications for a $1.5 million clinical research grant. Though it came over a year after NCI officials first intimated they would put some bucks behind their often-stated fascination with the syndrome, the news brought the first traces of hope for beleaguered clinicians like Paul Volberding at the UCSF Kaposi’s Sarcoma Clinic.
Then Volberding read the fine print in the cooperative agreement announcement. The $1.5 million grant was to be distributed over a period of three years at $500,000 a year. Moreover, it wasn’t going to just one hospital but was intended to be shared among a number of urban AIDS centers. Volberding’s heart felt leaden as he tried to create a budget request that would fit the application’s demands. He had ten scientists, many of whom were eminent retrovirologists and immunologists who had put other plans on hold in hopes for this chance to work on an important disease. Now he had to figure out a way to divvy up $500,000 among them. That, of course, assumed he would get the whole grant, an unlikely scenario.
The cuts Volberding would have to make were obvious, once he realized his priorities lay with the clinic’s pioneering treatments and immunology research. There would be no funding for epidemiology, even though San Francisco’s centralized and cooperative gay community gave investigators the best place in the world to study the spread of this disease. Without money for epidemiology, there certainly would be no way to figure which sexual practices spread AIDS most efficiently, or how to intervene and slow the transmission of the disease through public health education.
Just writing the grant meant begging word processors at the hospital and a constant scaling-down of what Volberding knew was needed to help stop the disease.
In Los Angeles, Michael Gottlieb, who had seen the first cases of Pneumocystis nearly two years before, was frantically trying to pare down his grant proposal, borrowing UCLA computer time and ignoring the frowns of colleagues who continued to urge him to get out of AIDS and back into a more “legitimate” area of scientific research. As the deadline for the grants approached, he drove to Santa Monica, where he found a gay man who volunteered to do the word processing of the complex request for nothing. Of course, the grant money would not come until well into 1983, Gottlieb knew, and it would not be enough to even start decent research. He was losing time, and time meant losing lives. He wondered how many people would die before the government took the epidemic seriously. What was the threshold of death and suffering society could tolerate?
He asked himself the same question later, after the gay man who had done the word processing for UCLA’s first request for an AIDS grant withered away and died of the disease.
The discovery of cyanide in Tylenol capsules occurred in those same weeks of October 1982. The existence of the poisoned capsules, all found in the Chicago area, was first reported on October 1. The New York Times wrote a story on the Tylenol scare every day for the entire month of October and produced twenty-three more pieces in the two months after that. Four of the stories appeared on the front page. The poisoning received comparable coverage in media across the country, inspiring an immense government effort. Within days of the discovery of what proved to be the only cyanide-laced capsules, the Food and Drug Administration issued orders removing the drug from store shelves across the country. Federal, state, and local authorities were immediately on hand to coordinate efforts in states thousands of miles from where the tampered boxes appeared. No action was too extreme and no expense too great, they insisted, to save lives.
Investigators poured into Chicago to crack the mystery. More than 100 state, federal, and local agents worked the Illinois end of the case alone, filling twenty-six volumes with 11,500 pages of probe reports. The Food and Drug Administration had more than 1,100 employees testing 1.5 million similar capsules for evidence of poisoning, and chasing down every faint possibility of a victim of the new terror, according to the breathless news reports of the time. Tylenol’s parent company, Johnson & Johnson, estimated spending $100 million in the effort. Within five weeks, the U.S. Department of Health and Human Services issued new regulations on tamper-resistant packaging to avert repetition of such a tragedy.
In the end, the millions of dollars for CDC Tylenol investigations yielded little beyond the probability that some lone crackpot had tampered with a few boxes of the pain reliever. No more cases of poisoning occurred beyond the first handful reported in early October. Yet the crisis showed how the government could spring into action, issue warnings, change regulations, and spend money, lots of money, when they thought the lives of Americans were at stake.
Altogether, seven people died from the cyanide-laced capsules; one other man in Yuba City, California, got sick, but it turned out he was faking it so he could collect damages from Johnson & Johnson.
By comparison, 634 Americans had been stricken with AIDS by October 5, 1982. Of these, 260 were dead. There was no rush to spend money, mobilize public health officials, or issue regulations that might save lives.
The institution that is supposed to be the public’s watchdog, the news media, had gasped a collective yawn over the story of dead and dying homosexuals. In New York City, where half the nation’s AIDS cases resided, The New York Times had written only three stories about the epidemic in 1981 and three more stories in all of 1982. None made the front page. Indeed, one could have lived in New York, or in most of the United States for that matter, and not even have been aware from the daily newspapers that an epidemic was happening, even while government doctors themselves were predicting that the scourge would wipe out the lives of tens of thousands.
October 28
CITY HALL, NEW YORK CITY
A policeman led Larry Kramer, Paul Popham, and the rest of the delegation from Gay Men’s Health Crisis to a dark and chilly basement room in the bowels of City Hall. As the group surveyed the small chamber, furnished with a beat-up table and some straight-back chairs, the policeman mentioned that he couldn’t remember the last time he had seen the room used. That was a few minutes before 11 A.M., the time of their appointment with Herb Rickman, the gay staff man for Mayor Ed Koch and liaison to the gay community.
Kramer had looked forward to the long-delayed meeting with Rickman and had neatly typed an agenda of the points the group needed to cover. Although he was dubious that GMHC would get much from Koch—they had spent well over a year just to get this audience with a low-level aide—the meeting at least would give the group a chance to set out an agenda of items the city needed to be working on.
Kramer hoped that the sheer justice of the GMHC arguments would carry the day. The week before, the group had announced that it was now offering social services to people suffering from AIDS. Since virtually all the social services were those that public health agencies normally provide, Kramer hoped the city would at least help the group finance the growing GMHC staff. Even more significantly, gay men needed some aggressive health education. That certainly was the duty of the health department, Kramer thought.
By the time Herb Rickman arrived at 12:30 P.M., bustling with his own importance, even mild-mannered Paul Popham was irritated. Yet the mayor’s aide was all smiles and benevolence, apologizing for the ninety-minute tardiness and quickly acceding to all the group’s proposals. If San Francisco was putting money into community groups to fight AIDS, then the city of New York would equal what San Francisco was spending, dollar for dollar, the mayor’s aide said. Yes, he’d get Health Commissioner David Sencer on top of this epidemic right away, and of course, the mayor would issue a proclamation for an AIDS awareness week in th
e spring. The city’s commission on real property would find a building for the group, Rickman promised, and the mayor’s liaison to Washington would call the White House.
Even the ever-implacable Larry Kramer seemed in a good mood as he left the meeting that marked the first official attention the municipal government of New York City had lent to the epidemic. “We’ve finally got our foot in the door,” the men told each other.
“Considering how slowly the wheels of government move, we are making some progress,” Paul Popham told the New York Native. After the year of delay and the months of unanswered phone calls and bureaucratic runarounds, it all seemed too good to be true. And it was.
PARIS
Drs. Francoise Brun-Vezinet and David Klatzmann had gone to the New York University symposium on AIDS in September to present their data on “AIDS in France: The African Hypothesis.” Their theory was that AIDS had come out of Africa, since so many of the early cases were among Africans and Europeans who had been to Central Africa shortly before falling ill. The African connection was all the talk of European AIDS researchers. Not too many months before that, Copenhagen’s Dr. Ib Bygbjerg, recalling the horrible death of his friend Grethe Rask, was derided for linking AIDS to infectious tropical diseases. Now, scientists in Brussels and Paris raced to be the first doctors to publish on the cases of Pneumocystis and virulent Kaposi’s sarcoma from the late 1970s.
Two distinct waves of the AIDS epidemic were sweeping Europe—the first dating back at least five years to Africa, and the second, more recent, among gay men who had contacts with American homosexuals, usually in New York City.
What had excited Brun and Klatzmann, however, was the scientific gossip about Human T-cell Leukemia virus, or HTLV, as the cause of AIDS. Dr. Robert Gallo at the National Cancer Institute had long hypothesized that HTLV had an African origin, being carried to Japan by Portuguese who had stopped in Africa on their way around the Horn in the late fifteenth century. HTLV was also endemic to the Caribbean, where the disease was festering among Haitians. Brun found the theory intriguing, given her studies into HTLV under Dr. Luc Montagnier at the Pasteur Institute. Klatzmann, meanwhile, had spent much of the past year working up immunological profiles on Willy Rozenbaum’s AIDS patients.
Brun and Klatzmann were also part of the working group on AIDS that Dr. Willy Rozenbaum and Jacques Leibowitch had organized early in the year. After returning from New York, the researchers eagerly shared the talk about HTLV at the next European group meeting. They decided to try to enlist retrovirologists to study the hypothesis, hopefully at the Pasteur Institute, France’s most respected scientific institution.
In the long brainstorming in the weeks that followed, Brun and Klatzmann also arrived at the idea that any search for such a virus would best be started not in the blood of AIDS patients but in the lymph nodes of men with lymphadenopathy. If anything marked the blood work of AIDS patients, Klatzmann said, it was the virtual absence of T-4 lymphocytes. The virus appeared so deadly that it killed its host cells, which might render fruitless a search for the virus in the blood. Given the fact that lymphadenopathy appeared to be some kind of early symptom of AIDS, it made more sense to try to find the culprit while it was still proliferating and not after it had delivered the coup de grace to so many T-4 cells.
This line of inquiry turned out to be one of the most momentous in the scientific history of the AIDS epidemic. Nothing seemed certain then, however, except that the French doctors finally had a tangible plan and, most importantly, that they needed a big retrovirus lab to see whether it would pan out.
On October 28, the Centers for Disease Control reported that 691 Americans were documented as contracting AIDS in the United States, of whom 278 were dead. Nearly one in five of the cases had been reported in September or October. The epidemic had swept into four more states in those past two months with the reports of the first cases in Alabama, Kentucky, Vermont, and Washington. Twenty states, largely in the South and Rocky Mountain regions, still reported no cases. Three more nations reported their first AIDS cases in those two months. Altogether, 52 cases had been reported in fifteen foreign nations, largely in western Europe.
October 30
UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
Dr. Marc Conant had organized one of the first national conferences on the AIDS epidemic, and Catherine Cusic, a respiratory nurse, eagerly took her place in the crowded auditorium for the session on epidemiology. For a year, she had been treating AIDS patients, putting tubes down their throats when they went on ventilators, holding them as they wheezed and coughed through the night. An active member of the Harvey Milk Gay Democratic Club, Cusic also had been bending Bill Kraus’s ear about the lack of local educational programs for AIDS prevention. She hoped the new epidemiology might nudge Kraus’s attention away from strictly federal issues and into local public health concerns.
Pediatric immunologist Art Ammann’s presentation at the conference on his AIDS babies gave final proof to Cusic’s conviction that AIDS was an infectious disease. The three children of the intravenous drug-using prostitute, all suffering from immune problems, established blood transmission that, together with the drug addicts themselves and the cluster study, was all the evidence Cusic needed to bolster her fears about the epidemic spreading among gay men. Epidemiologist Michael Gorman was droning on about census tracks and diagnosed cases when Cusic heard a statistic that made her sit bolt upright in her seat.
“In a central part of the city, one percent of gay men have been diagnosed with AIDS,” Gorman said cautiously.
Cusic interrupted him: “What central part of the city?”
Gorman looked flustered.
“A central part of the city,” he repeated.
Cusic knew immediately what he didn’t want to say. The central neighborhood of the city was, of course, the Castro Street District. One percent of the men there were diagnosed and nobody had told them? For Christ’s sake, she thought, half the guys she talked to remained convinced that AIDS was some media hype. This study could go a long way toward letting gay men know it was serious business.
“What are you going to do with this study?” Cusic demanded. “This is a phenomenal rate.”
The information had been submitted to a medical publication in England, Gorman explained. It couldn’t be released until it was published there, he said. Of course, the statistics were now available to every participant at the conference, and they quickly became the talk of the gay leadership.
Catherine Cusic started goading Bill Kraus to get the study into the newspapers so people would know how serious AIDS already was. Things had to get moving, she said. Kraus started checking around and was surprised that the consensus of gay leaders was to withhold the information. “It could destroy the Castro,” he was told.
After his presentation at the UCSF conference, Harold Jaffe from the CDC huddled with Dr. Art Ammann to check on reports of more pediatric AIDS cases. The CDC was preparing an article about the AIDS babies in New York and New Jersey. Jaffe knew that Ammann’s substantial reputation among pediatric immunologists would help give the report more credibility. It was during the conversation about the three children of the prostitute that Ammann mentioned another infant. Neither parent was an intravenous drug user or in any AIDS risk group, Ammann said, but the baby had undergone extensive transfusions at birth.
Jaffe knew immediately what Ammann potentially had—the first documented case of AIDS contracted through a blood transfusion. As soon as he returned to Atlanta, Jaffe called Dave Auerbach in Los Angeles for the most important AIDS investigation since Auerbach’s work on the cluster study.
Back in San Francisco, Ammann called Selma Dritz and told her the particulars of the baby’s health. Dritz contacted the Irwin Memorial Blood Bank, which had supplied all the baby’s blood.
In the early days of November, the bank completed its records search and came up with thirteen donors whose blood had been transfused into the baby in March 1981. Dritz’s eyes fr
oze on the name of one donor. She recognized it as the socially prominent international trade consultant who had died of encephalitis in August, the one who so vehemently had denied being gay.
“Oh, God,” she sighed. The familiar feelings returned to her: the excitement of being on the cutting edge of one of the most intriguing phenomena anyone in her profession could ever hope to experience, and the sadness because of what her insights meant for the society whose health she had spent a lifetime trying to protect.
She called Jaffe in Atlanta.
“You won’t believe this, but one of the donors is a man who was diagnosed with AIDS,” she said.
“It’s finally happened,” Jaffe thought.
20
DIRTY SECRETS
November 1982
CLUB BATHS, SAN FRANCISCO
Gaetan Dugas examined himself closely in the steamy mirror of San Francisco’s most popular bathhouse. He had always been looking for someone, he thought. As a child he had searched for his mother, not the woman who had brought him up in Quebec City, but his real mother. As soon as he was old enough to understand that he had been adopted into that rough-hewn life of the French-Canadian working class, he had dreamed of the day he would meet his true mother. He knew he was meant to be born into a better life, far from the brawny bullies who called him a faggot and rubbed snow in his face during those bitter Canadian winters.
He could see the difference in his face; he was meant for something better. He loved his family and adored his older sister, but they were dark and plain looking while he had always had delicate features and light, winsome hair. He was like the prince taken up by the farmers, he thought. When he did finally meet his natural mother, he told friends they fought. She wouldn’t say who his father was and she didn’t seem like a princess, and suddenly Gaetan had stopped talking about searching for his parents. Anyway, he had found his own niche in the royalty of gay beauty, as a star of the homosexual jet set.