And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (30 page)

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 of 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.

R
AYBURN
H
OUSE
O
FFICE
B
UILDING
,
W
ASHINGTON, 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.

Meanwhile, in an August 5 memo to Bill Kraus, the National Institutes of Health outlined their efforts. The entire undertaking from this $4-billion-a-year behemoth of health consisted of twelve different experiments being conducted at a leisurely pace by the National Cancer Institute and the National Institute for Allergy and Infectious Diseases. The complete AIDS program fit neatly on three typewritten pages, with plenty of room to spare. There was no mention of any future release of funding to outside investigators nor any plan for a coordinated response beyond their experimentation.

“This is appalling,” Kraus groaned, reverting to his standard complaint: “Doesn’t anyone care?”

F
IFE’S
R
ESORT
,
R
USSIAN
R
IVER
, C
ALIFORNIA

Gary Walsh had finally broken out of his militant introvert stage and was his old charming self, Joe Brewer thought. Lounging by the pool under the redwoods at Fife’s, a popular gay resort, it seemed to Joe that their decision to be everything-but-sexual lovers was working out well. Gary had just moved into a wonderful apartment above the Castro District with a panoramic view of the downtown skyline. Matt Krieger was ensconced in the quaint home he and Gary had purchased a mile away. Joe was single too, so he and Gary commiserated on boy troubles, enjoyed the sun, and planned their Christmas trip to Mexico.

Inside the rustic log cabin, taking a private respite from the sun, Gary Walsh applied lotion to the red flaky streaks over his bushy brown eyebrows. He hated the creams and despised the constant attention he had to devote to these blemishes. But the thirty-eight-year-old was terrified at what they really were—outward manifestations of the collapse of his immune system. No doctor had come out and said it, and Gary sometimes kept the conscious knowledge even from himself. For months, however, the thought had formed, rising from his mind like a poisonous vapor, as he tossed alone in sweat-soaked sheets.

By this hot August weekend, he had stopped editing the idea from his inner monologue, even though he never spoke of it with Matt or Joe. If he did not have AIDS now, Gary knew, he was certainly about to get it and there was nothing he could do except wait.

Gary finished dabbing the hydrocortisone cream above his eyebrows and checked his smile in the mirror before leaving the cabin to join Joe again by the pool.

B
ELLEVUE
H
OSPITAL
,
N
EW
Y
ORK
C
ITY

The patient, a Hispanic family man, was delirious when Dale Lawrence arrived at his bedside. His fever, fueled by severe
Pneumocystis carinii
pneumonia, was spiking and much of what he said didn’t make sense. English was not his first language, creating even more problems for the interview. His doctors already had asked whether the man was gay or had used intravenous drugs; he may have said yes, but nobody was sure. His wife, however, insisted that he was neither gay nor an intravenous drug user. His physicians agreed and pointed to a more likely cause.

In January 1981, the man had received massive blood transfusions for a coronary bypass operation at Bellevue. Twelve American blood donations and eight European units of blood were pumped into the man during the surgery. None of the American donors were on the list CDC kept of AIDS patients. Lawrence realized he needed to interview the dozen New York donors to see whether any were showing early symptoms of the syndrome or whether they fit into any high-risk group. Transfusion AIDS was a disaster waiting to happen, he felt, and the nation needed to be alerted at the earliest possible moment.

Lawrence was disappointed when the officials at the New York Blood Center, the nation’s largest blood bank, refused to supply him with the addresses of the donors so he could launch his planned interviews. No, the blood-banking officials maintained, there’s no evidence that AIDS can be spread through blood transfusions. The legal protection of donor confidentiality could not be breached unless transfusion-associated AIDS already was an established fact. Beyond allowing the CDC to compare donor names to its AIDS roster, the blood bank would not allow the CDC to have direct contact with the donors. The center did agree to call donors and ask if they belonged to a risk group. Not surprisingly, they later reported all donors were well and not at high risk for AIDS.

Dale Lawrence’s boss, Bruce Evatt, had made several trips to Washington over the summer to try to goad the blood industry into taking measures to limit donors from high-risk groups. Blood banks and the commercial manufacturers of blood products such as Factor VIII, however, could not comprehend the seriousness of the CDC’s warnings about possible AIDS contamination of the blood. When moral persuasion failed to move the blood industry, Evatt mentioned the fiscal implications for blood banks. They could be open for a wave of negligence lawsuits for failing to heed the CDC advice and continuing to spread AIDS. Nothing worked.

Lawrence continued the probe as best he could. He checked on who else was in the operating room the day of the surgery, in case a health staffer might have infected the man. He checked into who shared the same ventilator, which bed the man had Iain in, and even the heating duct in the room where the man slept. None of it panned out. Because the proof of AIDS transmission likely lay in the ability to interview the donors, he could not provide the necessary evidence.

There was something else that was curious about this case, although it wouldn’t make sense for some time. While reviewing the patient’s medical records, Lawrence discovered that the first signs of the patient’s illness were not the typical symptoms of nightsweats, swollen lymph nodes, or fatigue. Instead, three months after the transfusions, the man had complained of nerve problems in his leg. He used a cane until he got better, but then he became strangely forgetful and disoriented, almost as if he were senile. One of the patient’s children sighed sadly to Lawrence, “It seemed that Daddy had started to lose his mind.”

August 6, 1982

S
T.
F
RANCIS
H
OSPITAL,
S
AN
F
RANCISCO

The obituary the family sent to the newspapers that afternoon said the international trade consultant had died “after a long illness.” Indeed, the demise of the forty-eight-year-old trade expert was recorded more to interest the socially prominent than the medical community, even though the man was one of the first local AIDS patients to die of encephalitis, another new complication of a disease that seemed chock full of grisly surprises.

Concealing an AIDS diagnosis in a death notice was nothing unusual in these times. In the first years of AIDS, obituaries disguised the reality that an epidemic was stealing the lives of the renowned, not just the better-publicized profligates. One had to read the obituaries closely to understand this, to look for the vague long illness or the odd reference to a pneumonia or skin cancer striking down someone in, say, their mid-thirties. People, especially the plutocracy, didn’t die of some homosexual disease, according to the death notices; they just wasted away after a “long illness,” like Camille. Wives and children were never among the survivors listed in such obituaries. Instead there were brothers and aunts, nieces and nephews, and all too often, at least one parent assigned the unnatural task of presiding at his or her own child’s funeral.

Nevertheless, at 1:30 P.M. on an unseasonably sultry Friday afternoon, this graduate of Middlesex and Harvard had given a last painful groan, his head splitting from the horrible encephalitis brought on by his lack of T-4 lymphocytes, and his lungs constricted by the primordial protozoa that multiplied so prodigiously in his air sacs. And then he had died.

It made all the papers. The family pedigree was rolled out, right down to the fact that his great-grandmother had founded a famous local hospital. He was fourth generation of San Francisco high society, a member of the prestigious Pacific Union Club and all the right tennis clubs, and his services were held in the most fashionable Episcopal Church. The family preferred contributions to be sent to Harvard University, among other charities, none of which had anything to do with homosexual diseases.

The death would be little noted nor long remembered except that there was an ailing baby whose immune deficiencies were baffling an eminent pediatric immunologist at the University of California in San Francisco. Dr. Mort Cowan had ushered the seventeen-month-old infant through infection after infection, candidiasis and severe hepatitis, a swollen spleen and later the horrible
Mycobacterium avium-intracellular,
a bizarre opportunistic infection rarely seen in the United States.

It was about this time that Cowan showed the infant and all the immune mysteries his body presented to one of the nation’s foremost pediatric immunologists, Dr. Art Ammann. Ammann surveyed the infant’s charts and blood work and came to a quick, albeit startling conclusion. “It looks to me like this baby has AIDS,” he told Cowan.

Ammann was keenly aware of the controversy his conclusion would engender. As far as he knew, he was the only doctor to arrive at such a diagnosis in an infant. Because all the prestigious journals of pediatrics and immunology had rebuffed the attempts by physicians like Dr. Arye Rubinstein in the Bronx to advance precisely this hypothesis, Ammann, 3,000 miles away, had no idea that others were cautiously coming to the same conclusion.

August 13

D
ALLAS,
T
EXAS

At the first National Lesbian and Gay Leadership Conference, the hallways were crackling with talk of who’s in and who’s out. Most of the major gay leaders ignored the fifty earnest organizers meeting in a small conference room off to the side in the first national AIDS Forum.

Cleve Jones had felt so isolated in San Francisco that he was ecstatic to finally meet all the people who, like himself, could see how much of the future of the gay cause lay inside the mysteries of AIDS. The forum, Cleve thought, wasn’t like the dozens of other gay conferences he had attended, or even the gay leadership conference at the same hotel. He couldn’t get over how cute Paul Popham from Gay Men’s Health Crisis was. He also thought Larry Kramer, with his grating confrontational personality, would probably do much better in San Francisco than with all those closet queens in New York.

For his part, Larry felt like a fresh-faced, smart-assed new kid on the block. GMHC was growing by leaps and bounds, boasting over 300 volunteers now. The group would open their headquarters next month, and the organization was training scores of volunteers for a “Buddy Program” that would give the ailing people practical services. Support groups for people with AIDS and their friends and lovers would move out of the hospitals and into the new headquarters, as well. GMHC was creating an entirely new social service network, its leaders proudly told each other, and doing it completely without the self-important, politically correct bimbos who made such fools out of themselves in gay leadership conferences.

The mere fact that few of the big-time leaders bothered to take part in the AIDS Forum was itself proof of their lack of vision, Larry Kramer thought. As far as he was concerned, there was no other gay issue to be involved in. With a new epidemic beginning to erode the very core of gay political power in the big cities, the community couldn’t afford the old agendas. As it was, the gay political community was running on empty in its attempts to steamroll a national gay movement; AIDS threatened to bring the whole effort to a screeching halt.

Jack Campbell looked a little worried as he handed Cleve a check for the San Francisco Kaposi’s Sarcoma Education and Research Foundation. Cleve Jones understood why. From a single bathhouse Campbell had opened in Cleveland years back, he had built the legendary Club Baths chain, a franchise that ran bathhouses in every region of the United States and Canada. By virtue of their substantial largess to the always-starved gay political community, bathhouse owners long had been influential gay leaders in New York, Los Angeles, Miami, Chicago, and to a lesser extent, San Francisco. Campbell, a former chairman of the board of the National Gay Task Force, carried the most clout both nationally and in Florida, where he was the undisputed gay leader. Florida, it turned out, was one of the states hardest hit by the epidemic.

As he talked with Cleve, Campbell gently turned the conversation toward what AIDS might mean for his business.

“I think it’s a sexually transmitted disease that’s caused by a virus,” Cleve tried to say delicately, folding the check neatly into his wallet. “Nobody has advocated closing the baths, but I think there need to be changes.”

Privately, Cleve favored setting up informational pickets outside bathhouses to let patrons know they might be risking their lives in the sex palaces. But even hints toward such action were met with fierce resistance by others who still viewed bathhouses as symbols of the sexual liberation gays had fought so long to gain. Many still were not convinced that AIDS was a venereal disease. Wouldn’t they just be playing into the oppressors’ hands if they went and closed down businesses—gay businesses at that—and it turned out the disease was caused by poppers?

As a political issue, the bathhouses were put to rest quickly. The idea of closing them was too shocking even for those involved in the fight against AIDS, most of whom had cut their political horns in civil rights causes. Meanwhile, bathhouse owners like Jack Campbell and Bruce Mailman, the proprietor of the sprawling St. Mark’s Baths in New York, showed their keen interest in the epidemic by lavishing donations on AIDS groups, the people from whom warnings about bathhouses would be expected to come. We’re all in this together, everybody said.

The night after the AIDS Forum, the leading AIDS activists gathered in the hotel room of Dr. David Ostrow from Chicago to brainstorm with Dr. James Curran, the main speaker at the forum. Like the rest, Curran was surprised that so many of the gay leaders at the conference seemed so little concerned with the epidemic that could render all other gay issues irrelevant—but he wasn’t there to scold. He was there to listen. He kept asking, What’s new in the gay community that might have started it?

As the group reviewed old territory, Curran was taken aback when Larry Kramer said he already knew twenty-one people stricken with AIDS. How does one person know twenty-one victims? Curran wondered. What would that be like?

Cleve watched Curran draw out the various gay leaders, tapping their ideas, not saying much himself. Being a political animal, Cleve wondered what the politics of AIDS looked like from within the government. Were they getting enough money? What was really going on at the CDC? Curran didn’t talk much about that. The doctors in the group didn’t ask.

The week that gay leaders met in Dallas, the numbers of AIDS cases in the United States surpassed 500. The task force in Atlanta was aghast at the speed with which casualties were mounting. At least 20 percent of the cases had been diagnosed in the previous five weeks alone. At this rate, 1,000 people would be diagnosed by the end of the year, they figured. It was at this time that Bill Foege, director of the Centers for Disease Control, was heard to wonder aloud, with genuine curiosity: Why was nobody excited about this disease?

M
ANHATTAN

The opening of the Gay Men’s Health Crisis offices only underscored how badly the growing numbers of New York City AIDS sufferers needed city services. Once immobilized by the progressive disease, many were left stranded in their New York City apartments. They needed more than support workers in the Buddy Program; they needed home nursing care. Education was also needed. Hospital workers were getting more antsy with word that AIDS was spreading like hepatitis B. They needed to have their fears quelled. Meanwhile, gays needed their fears heightened so they wouldn’t be out fucking themselves to death, as Larry Kramer put it.

Attempts to meet with Mayor Ed Koch were rebuffed. It wasn’t hard to see why. Koch had just lost a bitter primary fight for the New York governorship against Queens Democrat Mario Cuomo. The issue of Koch’s perennial bachelorhood, of course, was badly manipulated in conservative parts of the state for Cuomo’s campaign. Posters appeared in the Archie Bunker land of Queens, saying: “Vote for Cuomo, Not the Homo.” Most gay leaders with any clout also had lined up for Cuomo in the state primary. Koch obviously was not about to start championing funds for a homosexual disease.