And the Band Played On

by Randy Shilts

By the summer of 1982, officials at Claude-Bernard Hospital, a hulking collection of old brick buildings near the outskirts of Paris, had their fill of the incorrigible Dr. Willy Rozenbaum. For a year, gay patients had cluttered their hospital hallways as he engaged in an epidemiological study that had neither official sanction nor approval. The hospital was getting a reputation as the center for this disease, and its administrators were getting uncomfortable. This was not a problem decent people became involved with, and they let Rozenbaum know it. The thirty-six-year-old infectious disease specialist was given an ultimatum: Either quit studying this disease and return to a legitimate area of medical inquiry or leave.

  The hospital counted itself lucky when Rozenbaum finally left that summer for a new post at Pitie-Salpetriere Hospital, where his studies would be tolerated if not enthusiastically supported. Rozenbaum knew he was risking his career by pressing ahead with his GRID studies, but he forged on anyway, establishing a position as Europe’s leading authority on the epidemic. Later, the administrators who had harassed Rozenbaum would cry for experts in the disease and belatedly try to establish themselves as the city’s most important facility for treatment of immune deficiency.

  By the time Willy Rozenbaum left his job at Claude-Bernard Hospital, the epidemic of immune suppression had spread into eleven European nations, including Belgium, Czechoslovakia, Denmark, West Germany, Holland, Italy, Norway, Spain, Switzerland, Great Britain, and of course, France.

  July 27

  WASHINGTON, D.C.

  If you don’t abide by scientific principles, chaos will ensue.

  It was a fundamental tenet of Dale Lawrence’s world. It was an idea that also recurred to him after he had flown up from Atlanta to join his boss, Dr. Bruce Evatt, and Don Francis and a gathering of leaders of the blood industry, hemo philiac groups, gay community organizations, and assorted luminaries from the National Institutes of Health and the Food and Drug Administration. The Centers for Disease Control had hoped the new evidence of blood transmission would incite the blood industry’s two major components, the voluntary blood banks and the for-profit manufacturers of blood products, to move quickly to stem the tide of blood contamination.

  The CDC privately preferred launching the only available preventive measure: donor deferral guidelines, asking people who fit into the high-risk groups, such as gay men, Haitians, and drug users, not to donate blood. The logical science of GRID demanded that logical steps be taken, the CDC thought, or people would die needlessly. However, as would be the case with just about every policy aspect of the epidemic, logic would not be the prevailing modus operandi.

  The hemophiliac groups immediately attacked the data that linked the immune suppression to the contamination of Factor VIII. They had read that some scientists believed gay men contracted the immune suppression simply because they were overloaded with infections. With all their exposure to blood-borne viruses, hemophiliacs also might be suffering from such immune overload, they argued. Isn’t it too early to say with scientific certainty that this thing is hitting hemophiliacs? The National Hemophilia Foundation was also nervous about the accusations directed at Factor VIII, the product that had done so much to improve the hemophiliacs’ quality of life in recent years. Did the CDC want these 20,000 stricken Americans to go back to the less sophisticated techniques of stopping bleeding with attendant hemorrhagic fatalities?

  For their part, the CDC hands wondered whether the hemophiliacs were reluctant to have their blood disorder linked in any way to a disease that homosexuals got; it created a terrible public relations problem.

  Gay community leaders were even more public relations-oriented than hemophiliacs. A New York City gay physician, Dr. Roger Enlow, argued persuasively that it was too soon to push for guidelines. Any such moves would have implications for the civil rights of millions of Americans, gay leaders noted. Only Dr. Dan William argued that such deferral of gay blood donors might be an entirely appropriate step toward saving lives, and that observation marked the beginning of his loss of popularity in the gay community.

  The agency with the authority to actually enforce any donor guidelines on the blood industry was the Food and Drug Administration. Already, the FDA was keenly aware of maneuvers for control of turf in this meeting. Some FDA regulators resented the CDC’s brash invasion of what was plainly their territory, the blood industry. Moreover, many at the FDA did not believe that this so-called epidemic of immune suppression even existed. Privately, in conversations with CDC officials, FDA officials confided that they thought the CDC had taken a bunch of unrelated illnesses and lumped them into some made-up phenomenon as a brazen ruse to get publicity and funding for their threatened agency. Bureaucrats have been known to undertake more questionable methods to protect their budgets. Given the Reagan administration’s wholesale budget slashing, this would not be all that drastic a reaction.

  In the end, everybody agreed that they should do one thing: Wait and see what happens. The situation would clarify itself and then they would move. How could the government be expected to forge national policy for more than 220 million Americans just because three hemophiliacs got sick?

  The meeting, however, did accomplish one memorable achievement. It was more than one year since Michael Gottlieb and Alvin Friedman-Kien had reported their cases of pneumonia and skin cancer, and the epidemic still did not have one commonly agreed-upon name. Different scientists were using different acronyms in an alphabet soup that further confused the already befuddled story of a strange new disease of unknown origin. The staffers at the CDC despised the GRID acronym and refused to use it. With the advent of hemophiliac cases, Jim Curran argued that any references to “gay” or “community” should be dropped and something more neutral be adopted. Besides, Curran thought ACIDS was a little grotesque.

  Somebody finally suggested the name that stuck: Acquired Immune Deficiency Syndrome. That gave the epidemic a snappy acronym, AIDS, and was sexually neutral. The word “acquired” separated the immune deficiency syndrome from congenital defects or chemically induced immune problems, indicating the syndrome was acquired from somewhere even though nobody knew from where.

  This bit of resolution, however, did not keep Dale Lawrence from fretting about the vacuum in policy on AIDS blood transmission. Immune overload didn’t fit with the facts, Lawrence thought. Hemophiliacs had been getting transfusions for decades, and only now did three of them pop up with Pneumocystis pneumonia in a matter of months, showing identical immunological profiles to those of the gay AIDS patients.

  Gays were worried about public relations and hemophiliacs were skittish about being involved with anything having to do with homosexuals. The FDA was worried about turf and was largely unconvinced there was a disease at all, much less something that merited the kind of serious scrambling those CDC hotshots wanted.

  There was something else from the meeting that also troubled Dale Lawrence. Jim Curran and others discussed that AIDS cases were turning up in prisons, and a commercial plasma manufacturer had admitted that a lot of blood had been drawn in state prisons. They were a good source of plasma, he said. Lawrence could think only, “Oh God.”

  By mid-1982, there was much to be ignored; the epidemic was spreading faster than the official pronouncements indicated. Science was not working at its best, accepting new information with an unbiased eye and beginning appropriate investigations. The handful of scientists who ignored their elders’ advice and worked on the newly christened AIDS epidemic found themselves not only struggling against a baffling disease but against the indifference of science, government, mass media, most gay leaders, and public health officials.

  In the Bronx, Dr. Arye Rubinstein was now treating eleven babies stricken with AIDS, but few scientists would believe his diagnosis. After holding his article on the infants for six months, the New England Journal of Medicine had returned it to Rubinstein with the firm conclusion that these kids most certainly did not have AIDS, the homosexuals’ disease. By now, at least, the CDC doctors w
ere interested in his findings, but they were moving cautiously. Jealously watched by other federal health agencies that were worried that the CDC might use the epidemic to cut into the already restricted flow of federal money, every CDC-announced development had to be entirely sound, or enemies in the government would use it to discredit them.

  In his lab at the Albert Einstein College of Medicine, Rubinstein was frantic with worry. He had to make people believe him; the science establishments’ obsession with the sex lives of most of the AIDS victims was blinding it to the horror that could unfold in other pockets of America. Given the projections of new AIDS cases, it was clear that many more such babies would be born to infected mothers. Many of these mothers would die. Who would take care of their babies? How would society cope with supporting a population that seemed born to die of such a horrible disease? Yet, pondering such solutions would happen only after he had convinced somebody important that there was a problem, that these babies even existed.

  August 2

  NEW YORK CITY

  Dan Rather put on his somber face as he stared into the cameras of the “CBS Evening News.”

  “Federal health officials consider it an epidemic. Yet you rarely hear a thing about it. At first, it seemed to strike only one segment of the population. Now, Barry Peterson tells us, this is no longer the case.”

  The story, one of the first network news pieces to appear on AIDS, had all the right elements: Bobbi Campbell talked about how he wanted to survive; Larry Kramer said the lack of government research was because it was perceived as a gay disease; Jim Curran provided the hopeful note that solving AIDS could lead to the elimination of all cancer.

  “But there is almost no money being spent so far,” concluded reporter Peterson. “For Bobbi Campbell, it is a race against time. How long before he and others who have this disease, finally have answers, finally have the hope of a cure?”

  Of all the sentences in this story, probably none was so pointedly directed at the fundamental problem than Rather’s own lead-in, “you rarely hear a thing about it.” As managing editor of the “CBS Nightly News,” Rather passed the news judgment that made AIDS a disease that one rarely heard anything about. Three years later, television commentators would still be talking about AIDS as that disease you rarely heard anything about, as if they were helpless bystanders and not the very people who themselves had decreed the silence in the public media.

  Because nobody heard much about this disease, nobody in 1982 really did very much about it, save for a few heroic souls. And they were too few to make much of a difference, ensuring that Bobbi Campbell, like thousands of other Americans, would lose his race against time.

  August

  NATIONAL INSTITUTES OF HEALTH, BETHESDA

  Now, more than a year into the epidemic, the National Institutes of Health had no coordinated AIDS plan. Everything was done on the basis of temporary assignments by the handful of doctors who happened to be intrigued by the world’s first epidemic of immune disorders. At the sprawling NIH hospitals, a few doctors struggled valiantly with every conceivable medical technology to save the AIDS patients, and they failed. At Bob Gallo’s lab at the National Cancer Institute’s Division of Tumor Cell Biology, about 10 percent of the staff effort went into poking around the devastated lymphocytes of AIDS patients. In his lab at the NCI, Jim Goedert desperately wanted to launch full-scale bench investigations into finding the AIDS virus but ran straight into the brick wall of limited resources. The dilemma would be hard to explain to outsiders, he thought. The money was in the budget. Indeed, Congress had been generally successful at holding the budget line for health against the Reagan budget cutters. The administration, however, was retaliating by not permitting managers like Goedert to hire anybody. Goedert had enough money to pay for lab tests, to finance computer activities, and to purchase supplies, but he couldn’t put any new people on board. So he didn’t have the scientists he needed to steer studies, analyze data, and then write it up into papers.

  In other labs, this or that contractor may have diverted NIH funds for the research, but no substantial effort was under way. It was nearly eleven months after the NCI symposium on Kaposi’s sarcoma in Bethesda, and still the institute had not released its request for funding proposals or made any move to free money for AIDS investigators outside Bethesda. Researchers outside the government would have to fend for themselves.

  CENTER FOR HUMAN TUMOR VIRUS RESEARCH, UNIVERSITY OF CALIFORNIA, SAN FRANCISCO

  The hemophiliac cases convinced Dr. Jay Levy that he needed to shift from studying Kaposi’s sarcoma to the blood of AIDS patients to find whatever microbe was knocking out their T-4 cells. While East Coast scientists still squabbled over the syndrome’s etiology, West Coast researchers were by now almost unanimously convinced that one infectious agent was at work. The tilt toward a single agent raised an entirely new quandary for Levy. Though his tiny eighty-foot-square lab on the twelfth floor of the Medical Sciences building had been fine for studying the skin cancer tumors of KS, the university maintained that the lab did not have the appropriate safety gear for studying an infectious disease. In order to comply with university safety standards, Levy needed to adapt a flow hood with a new $1,500 filter.

  Again, Levy was at a loss as to how to comply. Like human tumor virus labs across the country, he had been bled dry by the administration’s grant cuts and scientific trends that had put cancer virus research out of vogue. Many of Levy’s colleagues were leaving academic medicine to get more secure jobs at private pharmaceutical corporations; some dropped out of science altogether. Levy knew that, within a few years, America would face a severe shortage of retrovirologists because of the funding cutbacks. In 1982, nobody seemed to care; that would be the nightmare of 1985. As it was, Jay Levy went to a wealthy friend in April just to meet the payroll of the only two staffers in his center, a part-time technician and a part-time secretary. He was under orders from the university to come up with grant money or leave. Now, as he was about to start what he felt would be promising research into the cause of AIDS, his efforts were arrested because he did not have $1,500 for a filter. He asked the chancellor’s office for a few extra bucks but was turned down; there was no mechanism within the university that would channel him the sum.

  Crestfallen, Levy talked to Marcus Conant, who continued to coordinate the efforts of the UCSF doctors. Never one for bureaucratic niceties, Conant decided on the spot, “We’ll just go to the legislature.” Using his growing network of gay political contacts, Conant approached the assembly speaker’s office for the $1,500 for Levy’s lab.

  Back at the university, the hierarchy was furious with the retrovirologist. In the best of times, university officials resented any involvement at all with the political process, disdaining the shortsighted concerns of grubby politicians in the legislature. The only thing they hated more was the tendency of legislators to want to give money for this or that research, taking away the discretionary power of the university chieftains themselves. Such direct legislative funding was deemed, in the lofty towers of academia, tainted money.

  Levy got his money nonetheless. One call from the assembly speaker to the chancellor took care of that. But the money came six months after he had requested it, in January 1983.

  Levy could have spent those six months looking for the AIDS virus. Indeed, when his lab became one of three institutions in the world to isolate the cause of the syndrome, it was obvious that the $1,500 was well spent. It was also obvious, Levy subsequently noted, that it could have happened much faster.

  The story of the $1,500 filter was just one of many that popped up in every corner of the nation in 1982.

  The lack of university enthusiasm over this homosexual disease was not restricted to retrovirology or San Francisco or Paris. In Los Angeles, Dr. Michael Gottlieb’s requests for a clinic to study the burgeoning numbers of AIDS patients were still being shuffled around by administrators who remained uncomfortable with the notion of becoming a center for study o
f a homosexual disease. Some even seemed jealous of the attention Gottlieb had garnered in the past year.

  At the CDC, Dr. James Curran, head of the rechristened AIDS Task Force, continued to cajole eminent virologists and researchers into looking into AIDS, but few were interested.

  The noted lack of enthusiasm among UCSF administrators for housing the nation’s only AIDS clinic prodded Marc Conant and Paul Volberding to shift the clinic’s site out of UCSF and into San Francisco General Hospital, the teaching hospital associated with the university. In July, the city government approved the necessary funds to revamp a cancer clinic at the county hospital into an AIDS outpatient clinic, to open at the start of 1983. Volberding justified this first outlay of any municipal funds anywhere in the world for the AIDS epidemic by noting that between July 1, 1981, and July 1, 1982, he had seen ten cases of Kaposi’s sarcoma. The city’s $40,000 appropriation was based on Volberding’s projection of seeing twenty more cases in the next year. The prognostication, of course, was hopelessly naive, but these summer months of 1982 were the innocent times when the names of all San Francisco’s AIDS patients fit on one blackboard.

  RAYBURN HOUSE OFFICE BUILDING, WASHINGTON, D.C.

  In Washington, Tim Westmoreland also had spent all summer trying to get straight answers about AIDS spending from the honchos at the U.S. Department of Health and Human Services. In a July memo, the National Cancer Institute proposed to dole out $1.25 million in the next fiscal year to support three years of research for scientists outside the government. Westmoreland was flabbergasted. It would be three months before the government would even accept proposals for the funding, he realized, and probably another nine months before the money would be released. For the fiscal year coming to a close, the NCI had spent a total of $450,000 to support extramural research. Next year, they planned to spend $520,000. Out of its $1 billion budget, the NCI had spent all of $291,000 for its own studies on Kaposi’s sarcoma, or about one-fortieth of one percent of its money. The total Centers for Disease Control spending for AIDS, meanwhile, amounted to about $2 million out of the agency’s total $202 million budget.