And the Band Played On
The media watchdogs had gone to sleep on this story. Because of it, government agencies on both the federal and local levels were left to deal—and to not deal—with the AIDS epidemic as they saw fit. This would not be obvious at first, for the government appeared to spring into action at the sight of this first media blitz. Later, however, the real quality of AIDS journalism was clear: Reportage would be like the Mississippi River that year, with much breadth but little depth.
The second trend was fascination with how San Francisco homosexuals were reacting to the AIDS crisis. By mid-spring, news crews were endlessly trooping up and down Castro Street for such stories. Of course, New York City had three times the AIDS cases and nearly one-half of the nation’s AIDS caseload. But there, you wouldn’t be able to get the mayor to say anything for your story because his office referred calls on AIDS to the health commissioner, and you wouldn’t find city programs to write about because there were no city programs, and you didn’t have the flurry of civic attention to AIDS because New York City officials seemed largely impervious to the fact that an epidemic existed. As the months wore on, San Francisco became AIDS City, U.S.A., not only in the popular imagination but in its own. The city’s gay men were as intently watched and studied as a newly discovered tribe of cave dwellers in an exotic tropical paradise.
Late Afternoon
NATIONAL CANCER INSTITUTE, BETHESDA
Francis Anton Gallo was the son of immigrants from Turin, Italy, and he shared the northern Italians’ cool, intellectual disposition even after he forged an immigrant’s success story in Connecticut, rising from welder to metallurgist to president of the company where he once was among the proletarians. His wife’s family hailed from the warmer climes of Italy, and she luxuriated in that region’s warm, extroverted, and clannish qualities. The couple’s son, Robert, expressed both the charisma of his mother and the workaholism of his father.
The latter aspects of his personality were not evident in Robert Gallo’s early life in Waterbury, Connecticut. But the turning point of his life was in 1949, when he was thirteen and his younger sister contracted leukemia. This took Bob Gallo to Harvard University for hospital visits. There, he met a famous cancer expert named Sydney Faber, and he saw scientists in their laboratories struggling to save the lives of ailing children. His sister died from leukemia, but Bob Gallo’s fascination with research biology continued. Encouraged by an uncle who taught zoology at the University of Connecticut, Gallo found himself trailing after a research pathologist at a local Catholic hospital. The pathologist was the first cynic Gallo had ever met. Young Gallo tended more toward melodramatic flourishes than contemplation, but he slowly learned what critical thinking was. By his teen years, he was allowed to perform his own autopsies, as he dove passionately into his preoccupation; by the time he was eighteen, Bob Gallo knew he would spend his life at the bench, doing medical research.
Still, Gallo’s teen years were trying times. He was not an excellent student. He spent less time on homework than on the basketball court and was out late every night dating. Had he not broken his back during a basketball game and been confined to bed for nearly a year, he might never have blossomed from mediocrity. During his difficult recuperation, however, he read everything he could on biology. While in college, he slew scores of mice in a makeshift laboratory above his mother’s garage. After his residency at the University of Chicago, Gallo’s determination to stick to the research bench was hardened by his first assignment at the National Cancer Institute. By some macabre chance, he was assigned to work in the acute children’s leukemia ward at the National Institutes of Health hospital. From then on, he told himself, he would never work with patients again.
Gallo started to do research in 1966, and by 1970 he had embarked on the work that would earn him fame. At that time, substantial controversy had enveloped the theory that viruses might cause leukemia and even some forms of cancer. Gallo focused on retroviruses and by the mid-1970s was among the scientists to characterize the enzyme reverse transcriptase, the chemical that retroviruses secreted to replicate themselves in their victim cells. The work gave science the marker, a chemical footprint, that could aid in detecting retroviral infection. This alone represented a significant advance for retrovirology, yet few scientists appeared particularly impressed. After all, retroviruses were largely viewed as bugs of chickens, mice, and cats. What relevance did this have to humans?
Bob Gallo thought science was merely looking toward the obvious. When these animals were infected with a retrovirus, they shed virus like there was no tomorrow. It was easy to detect because there was so much of it. In humans, although the virus might be there, it was just not as easily detectable. What Gallo needed was a way to grow white blood cells in such quantities that he could prospect for retrovirus in a rich vein. He tried different culture media in attempts to keep human lymphocytes alive and multiplying in culture systems. In the process he discovered interleukin-2, a natural substance that stimulates T-cell multiplication. Adding interleukin-2 to cultures kept T-cells alive and multiplying continuously.
With these discoveries, Bob Gallo’s career advanced smoothly—until the false alarm of 1976. It appeared that he had discovered a new virus, and proudly, Gallo announced that to the world. When it turned out that an animal virus had contaminated his cell line, and there was no new virus, Gallo’s reputation plummeted. It seemed that his life always swung to such extremes, so the researcher pushed on. In 1978, he discovered a new retrovirus, HTLV, but, fearing that his latest work would be dismissed because of his earlier problems, he labored until he could prove his case perfectly. This time he definitively showed that he had a retrovirus that caused leukemia. After publication of his findings in 1980, Gallo was a star again, receiving the coveted Albert Lasker Award. He became a recognized patriarch in the field of retrovirology. By the spring of 1983, another virus related to HTLV had been discovered by another scientist in Gallo’s lab, who dubbed it HTLV-II.
For all his accolades, Bob Gallo remained a controversial figure in science. Detractors considered him pompous and arrogant. In scientific politics, he could be ruthless, they said, often pointing back to the 1976 embroglio as proof that Gallo was not always reliable. Gallo himself saw the criticism as reflecting the shadow side of his character. Yes, he was arrogant and proud, but that was what was required from the few brave scientists who challenged nature to yield its secrets to them. Still, he knew that his strength was his destroyer; it would be a theme in the coming years.
On this Monday afternoon in Bethesda, Dr. Robert Gallo was restless, drawn back to the disease that had frustrated him the year before in the first scans for a retrovirus in AIDS blood. Jim Curran was trying to embarrass Gallo into working on the disease. Jacques Leibowitch was prodding him with constant phone calls from Paris. Despite his distaste for the whole subject of AIDS, he could see that the stakes were being redefined. One needed to look no further than the new cover of Newsweek to see that.
Officials at the National Cancer Institute were restless as well. With the imminent publication of the French research and the HTLV studies of Max Essex at Harvard, the institute knew it was time to get serious about AIDS. Deputy Director Peter Fishinger called a meeting for 4:30 P.M. in the conference room of the NCI director. Fishinger now grasped that the NCI response to the epidemic had been less than ideal, but he saw the problem as partly the result of the way the system was constructed. Health agencies did not have the budgets to fire off large sums to the brash young doctors who were virtually the only scientists involved in the epidemic up to that point. Just to get the first round of grants out, the NCI had dropped its standards below what it considered acceptable quality for research projects. With the media now starting to focus on the problem, however, all this was going to have to change.
This meeting marked the first gathering of the NCI Task Force on AIDS, said Fishinger, scanning the room. Dr. Bill Blattner from the family section of NCI’s cancer epidemiology unit was there, as were Jame
s Goedert and Bob Biggar, who were among the lonely NCI doctors who had worked on AIDS from the start. Anthony Fauci, who coordinated AIDS for the National Institute for Allergy and Infectious Diseases, also had sent a representative.
Robert Gallo spoke forcefully. The French claimed they had something, he noted. Somebody had even delivered a lymph node all the way from Paris for him to study.
“I believe a retrovirus is involved, and we’re going to prove it or disprove it within a year,” said Gallo. “We’re going to spend a year and nail this down one way or another.”
Fishinger promised Gallo that he could have the full resources of the NCI’s elite laboratory in Frederick, Maryland. He would make sure everybody worked with the retrovirologist. Dr. Sam Broder, who was the NCI’s clinical director, promised that Gallo would have “absolute priority” for tissue specimens from AIDS patients at the sprawling NIH hospital. Finally, the battle would be joined.
This date, April 11, 1983, was later cited by the officials of the National Cancer Institute as the turning point, the time that the institute became firmly committed to finding the cause of Acquired Immune Deficiency Syndrome. It was precisely one year, ten months, and seven days after the MMWR had announced the first twenty-six cases of Kaposi’s sarcoma in gay men, as well as the eighteen other mysterious cases of Pneumocystis and other unexplained opportunistic infections. Between the time of that announcement and the date of the NCI’s commitment to finding the cause of the disease, 1,295 Americans had contracted AIDS and 492 had died. Later, the Centers for Disease Control calculated that the numbers infected with the strange new virus behind the epidemic had grown by the tens of thousands, if not hundreds of thousands, during those twenty-two months.
Although the commitment proved to be a boon to Robert Gallo’s lab, other AIDS research at the National Institutes of Health foundered for lack of money. When Jim Goedert and Bob Biggar had started their research on cohorts of Washington and New York City gay men in 1982, they had hoped they could learn what factors might lead some gay men to come down with AIDS while others remained healthy. Such a long-term study was essential to understanding not only the cause or causes of the syndrome but the natural history of the disease. By 1983, however, Goedert still did not have the funds to hire even a nurse to do the most basic tasks. The researcher had to drop plans to follow his Washington group. Just drawing blood and conducting physical exams on the New York cohort took six weeks. This left Goedert with mountains of data that could not be analyzed because he did not have adequate staffing.
Meanwhile, Jim Goedert’s conversations with Jim Curran thoroughly committed him to the idea that a new infectious agent was causing the syndrome. Moreover, his physical exams in New York had convinced him that the disease was wearing many faces, appearing as full-blown AIDS in some, lymphadenopathy in others, and even a vaguer malaise in many more.
Belatedly, Goedert discovered that the NCI lab where he sent his blood samples for AIDS did not have the capabilities to look for reverse transcriptase, the sure marker of retroviral infection. The tests were never run. Life as an AIDS researcher at the National Cancer Institute, he later remarked, meant “chronic frustration.”
At the National Institute for Allergy and Infectious Diseases, Dr. Anthony Fauci shared Goedert’s discontent. You needed a pot of gold to draw researchers, and such money was not forthcoming from an administration that was nickel and diming its way through an epidemic. Unlike the NCI, the NIAID saw no pressing need to accelerate its AIDS research. NIAID Director Richard Krause was dumbfounded at criticism leveled at his institute. It was the clinicians who were making the most noise, he noted, the doctors in the field with the patients. Sending money to them, Krause felt, would be like pouring funds down the drain; most had no experience in research. But the NIAID had a balanced portfolio of research on the immune system. In the field of battle, a wise general did not send troops scurrying every which way at whim. They were placed strategically, according to a plan. “How,” Krause wondered, “could it move any faster?”
Besides, he thought, there were plenty of centrifuges and culture disks in labs across the United States. The resources were there if the doctors wanted to use them.
CENTER FOR HUMAN TUMOR VIRUS RESEARCH, UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
The talk about the French and American publications on HTLV made Dr. Jay Levy even more enthusiastic about looking for a retrovirus. All the publicity about AIDS, however, had created another obstacle. No lab would let Levy use its ultracentrifuge to experiment with blood from AIDS patients. Scientists were growing antsier about picking this horrible thing up in the lab. Levy, who only recently had experienced a six-month delay in getting a flow hood for the most basic lab research, found his AIDS research delayed once again, this time for lack of an ultracentrifuge.
April 12
CAPITOL BUILDING, WASHINGTON, D.C.
“In terms of AIDS, the Department [of Health and Human Services] has made a very strong commitment,” Secretary Margaret Heckler told a House appropriations subcommittee. “In fact, I have spoken to the head of the CDC personally on a number of occasions on the subject and there is no stone being left unturned to pursue an answer. This is a serious, very serious problem and every single research avenue of the Department is being directed toward the resolution of this problem…. The Public Health Service is going to use every dollar necessary to try to find an answer because the fatality rate of this disease is so staggering and so high that it threatens this whole society…. I have to say that, in the AIDS situation, I really don’t think there is another dollar that would make a difference, because the attempt is all out to find the answer.”
That afternoon in Atlanta, Don Francis again wrote a memo to Dr. Walt Dowdle, offering a far different assessment of the federal government’s response to the AIDS epidemic.
“Our government’s response to this disaster has been far too little,” wrote Francis. “Much of this is because the slope of the epidemic curve has been gradual, lasting years instead of days. We are not accustomed to dealing with outbreaks having long latent periods. But these situations require even greater speed because even after discovery of the cause, we will be so far behind and control will be even more difficult….
“The inadequate funding to date has seriously restricted our work and has presumably deepened the invasion of this disease into the American population…. Because of the slow and inadequate funding process, it seems that after we get funds and recruit staff, we are always too late—the disease has passed us up again and we are again understaffed and underfunded.
“There must be some way to do it right…. In this vast and wealthy country there must be a way to get $10 to $20 million immediately for this disease. I stress speed because the usual government funding and spending processes are so slow as to be unacceptable in such an emergency situation.
“For the good of the people of this country and the world, we should no longer accept the claims of inadequate funding and we should no longer be content with the trivial resources offered. Our past and present efforts have been and are far too small and we can’t be proud. It is time to do more. It is time to do what is right.”
SAN FRANCISCO
Gary Walsh’s idea for a candlelight march had spread nationally by mid-April. AIDS sufferers in dozens of cities took the lead in putting together observances under the glare of newfound media attention. The San Francisco planning sessions for the protest, which had been named “Fighting for Our Lives,” were a scream. Gary traded the latest AIDS jokes with the other AIDS casualties. Should they play connect-a-dot with their lesions? How does Anita Bryant spell relief? Gary asked. A-I-D-S. One Kaposi’s sarcoma patient went to a meeting with a hankie marked with purple spots to signify his interest in “victim’s sex.” The latest quip on Castro Street concerned the news that the CDC finally had discovered the cause of AIDS to be track lighting on industrial gray carpeting.
Gary did hilarious imitations of himself lobbying
the legislature in Sacramento for a bill to establish a panel that could assess the needs for AIDS funding in the state. “I’m dying of this disease,” he’d say. “How can you vote against it?” It was shamefully melodramatic, which only made Gary love it more.
They shared stories about acquaintances who tried discreetly to eye their lesions. Gary had called attention to those doing so, much to the chagrin of people who thought they were being ever-so-subtle.
They also shared their anger. They were sick of being called AIDS victims, because the semantics implied that they were passive and helpless at a time when they wanted to fight actively to regain their health. They were tired of being called AIDS patients because most of them weren’t in the hospital, the normal criterion for defining a patient. They wanted to be people with AIDS or, in the acronym-loving gay community, just PWAs. A nasty fight over such issues had broken out between the PWAs and the Bay Area Reporter, the idiosyncratic weekly that boasted the largest circulation of any local gay newspaper. Editor Paul Lorch had begun criticizing the various AIDS programs, such as the Shanti Project and the KS Foundation, as gravy trains for gay radicals, “wolves” and “AIDS pimps” out to leech a stricken gay community.