And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (27 page)

Brandy Alexander was typical of these patients, his doctors told Don Francis before he entered the room. Although Don Francis had come to Sloan-Kettering with Jim Curran on other business, he felt embarrassed that he’d been working on this disease for nearly a year and still had not met a patient. The physicians led him to Brandy Alexander, who exuded a gracious charm. He lifted his hand to Francis, as though he wanted the young blond scientist to kiss it. Francis immediately saw the large splotches of purple on the man’s arm.

It wasn’t even his favorite color, Brandy confided. He didn’t have any bags to match.

Alone, in the room, Brandy talked honestly with Francis about his life. Brandy could tell Francis wasn’t particularly shocked at anything he heard.

“The sex got to be unstoppable,” he said, his eyes wandering around their hollow, gaunt sockets, trying to see the answer. “I don’t know whether it was to be close to another person because I didn’t want to be alone. I don’t know if I just got bored with normal sex, so I’d try something new. Something more exciting. Fisting. Another rung.”

The monologue was taking Brandy to a conclusion that irked the scientific side of Don Francis’s mind. Brandy was trying to find a reason he was lying in pain in that bed in Room 428A about to die. The old moral teachings, Francis thought, die hard.

“I think this is a communicable disease and you got it,” said Francis, matter-of-factly. “You’re not being punished. A virus has made you sick.”

Back with the Sloan-Kettering doctors, Don Francis got down to the purpose of his mission. Sloan-Kettering had one of the handful of retrovirus laboratories in the country. Even the CDC didn’t have a retrovirus lab, and it would be months before they could get one together. They weren’t set up to investigate long-latent viral diseases in Atlanta, Francis said, just the quick hits that burst forth and need a fast solution. They were floundering on GRID and needed help.

Sloan-Kettering needed to get to work on GRID, Francis prodded. There wasn’t time to delay.

The doctors listened patiently and agreed this was an important problem. They’d think about it and get back to him. Of course, Francis knew then that they would never call back.

The dream came to Don Francis often during those long, frustrating nights in the gathering darkness of 1982. Just beyond his reach, a faint orange light was suspended, shimmering with promise. It was The Answer, the solution to the puzzle. He reached for it, stretching so he could draw the light toward him. But it drifted farther and farther out of reach. The answer was always there before him, tantalizingly close, and still beyond his grasp.

Don’s wife usually awoke him at that point. His mournful groaning would disturb the kids.

June 11, 1982

C
ENTERS FOR
D
ISEASE
C
ONTROL,
A
TLANTA

Sandy Ford called Dr. Bruce Evatt, the CDC hemophilia expert, as soon as the order came in. Sandy, who had first alerted the CDC to the GRID epidemic last year, had even worse news to break to Evatt.

It had happened, Ford told him. An order for pentamidine had come in from Denver. The
Pneumocystis
victim, the doctors had said, was a hemophiliac.

That night, Evatt’s associate in the Division of Host Factors, Dr. Dale Lawrence, took a flight to Stapleton International Airport in Denver.

June 14

D
ENVER

With his white shirts, plaid ties, black oxfords, and thinning dark hair that fell over earnest dark eyes, Dr. Dale Lawrence looked like everybody’s favorite biology teacher in high school. He sounded like a serious instructor too, soft-spoken even as he strained to put his words together just right so everything he said would be easy to understand. He had to ask all these questions, he told the stunned wife of the hemophiliac patient, because so much was at stake.

Although Lawrence had worked for a year with the CDC’s Division of Host Factors on issues of genetics and susceptibility to GRID, he had been to enough Task Force meetings to know what needed to be asked. He had to positively eliminate the chance that the man might have been involved in gay experiences or, perhaps, some kind of drug use or medication that could have engendered his immune deficiency. Lawrence’s intense investigation the earlier few days had eliminated everything else. Just that morning, he had gone to the local blood center. Blood bank officials were very skittish about his arrival; Lawrence knew why. Just one or two documented hemophiliac GRID cases would severely shake the foundations of the blood banking industry.

Lawrence carefully drew out grids of all the different batches of the Factor VIII clotting factor that had been injected into dozens of other hemophiliacs served by the same Hemophilia Treatment Center in the Denver area. Maybe there was just one bad lot that was making people sick, and the
Pneumocystis
diagnosis was a wicked coincidence. Looking back at three previous years, however, he could find no single such lot.

Instead, Lawrence went back to the wife of the man wheezing on the ventilator at the University of Colorado Medical Center. The couple’s troubled life story was laid out. The man, a janitor, had struggled against his disease for a lifetime, already living decades beyond what doctors had predicted when he was born. The uncontrolled bleeding in his joints had left him partially crippled, but he toiled to eke out a living for his wife and children just the same. Factor VIII, of course, had been a godsend, but now he was in there dying. Wasn’t there anything anybody could do?

At the end of the conversation, Lawrence felt he had eliminated other possible routes of infection. Lawrence’s boss, Bruce Evatt, was convinced that GRID was being spread through Factor VIII even before Lawrence returned with the final results of his investigation. Evatt had suspected it for months, after the first Florida man had died of
Pneumocystis.
The Colorado case was the clincher. Because bacteria, protozoa, and one-celled microbes were easily weeded out of the Factor VIII during its preparation process, this meant that GRID was caused by a virus, the only organism small enough to pass through the filters.

Both Lawrence and Evatt knew there would be more GRID cases among the hemophiliacs soon and blood transfusion cases would follow. Because of their exposure to vast numbers of donors, the hemophiliacs simply had the misfortune to get it first, like the gay men playing on the freeway in the late 1970s.

That Afternoon

C
ASTRO
S
TREET
, S
AN
F
RANCISCO

While Dale Lawrence was wrapping up his Denver interviews on the nation’s first documented hemophilia GRID case, Cleve Jones eagerly made his way to the doorway of the Castro Street building that he had leased as the headquarters for the Kaposi’s Sarcoma Education and Research Foundation. Marc Conant and a couple of doctor friends had put up the money for the rent. This was the first office of any agency established specifically for the epidemic of immune suppression, and it started with one beat-up typewriter donated by a local gay bartender, office supplies pilfered from volunteers’ various employers, and one telephone that started ringing within an hour of its installation. And it never stopped ringing.

Years of leading demonstrations and hanging out on Castro Street gave Cleve a vast reservoir of fellow rabble-rousers, old tricks, and prospective boyfriends from whom to cull volunteers. There was a deadly enemy out there. The fucking thing didn’t even have a name.

“I don’t know what to say,” said friends Cleve recruited to answer the new gay cancer hotline.

Cleve sighed, “Nobody does.”

F
EDERAL
B
UILDING
,
S
AN
F
RANCISCO

Bill Kraus had respected San Francisco’s Congressman Phillip Burton ever since Harvey Milk pointed out the bulky legislator at a political rally and called him “II Patrón” of the city’s liberal Democratic establishment. The congressman had created the awesome liberal clique that had dominated local politics for two decades through the weight of his wily, hardball tactics and his pioneering coalition of black, labor, and gay votes. Burton had engineered the ascension of the late George Moscone to mayor and had been a key ally to the flamboyant Assembly Speaker Willie Brown, generally regarded as California’s second most powerful state politician after the governor. Burton’s younger brother John represented another San Francisco congressional district. Phil Burton himself was one of the most powerful members of the House of Representatives, having missed being elected House Majority Leader in 1976 by one vote.

However, Phil Burton’s obsession with playing Washington politics had weakened his San Francisco base, and never was he more vulnerable than when he sought his tenth term in 1982. The Republicans had nominated State Senator Milton Marks, the only GOP politician ever to make much of a name for himself in recent local political history. His successive wins in difficult elections, everyone knew, were because he had courted and charmed the gay community for years. Although the liberal Marks was a thorn in the side of the state’s increasingly conservative Republican party, his election gave the GOP a chance to oust that troublesome Burton, so major donations from Republican political action committees flowed to Marks’s coffers.

When Burton called Bill Kraus for a meeting, he was worried. Burton needed a liaison to the gay community. He wanted to win the election and get back to Washington.

“And what’s the most important issue today?” Burton asked Bill.

“Gay cancer,” Bill said.

The fact that the response came almost as a reflex stunned Bill. He hadn’t really taken GRID that seriously in recent months. Like everybody else, he was eying his pimples more suspiciously, but fundamentally, he saw gay cancer as something that happened to other people, sleazy people with 1,100 sexual contacts. That’s what he had read in the paper.

Self-conscious that he had pounced on the issue so hard, Bill laid out the political terms for the Godfather of San Francisco politics in a conversation that would have far-reaching implications for the epidemic.

He couldn’t believe that the government wasn’t ringing alarms and pledging tons of money to this disease, Bill explained. It didn’t make sense. Look at all the hoopla they made about Legionnaire’s and toxic shock. Bill didn’t have the proof yet, but he suspected they weren’t talking about it because they didn’t want to spend money. They wanted to save their bucks so they could finance death squads in Central America.

When placed so sharply in the partisan terms with which Burton was most comfortable, Burton began to see Bill’s point. Bill could work on this gay cancer stuff, he promised, reminding him not very gently that there was an election to win first.

Bill Kraus was ecstatic about his new congressional staff job. His relationship with Kico Govantes wasn’t going well. He had shown Kico everything about the gay scene and defended the liberating sexuality so much that Kico was now intrigued with exploring it himself. In hopes of rekindling their fading passion, Bill had taken to escorting Kico to local baths.

Kico was always uncomfortable in those places, feeling they were dirty, even evil. And he had begun a romance with a handsome older architect, so he didn’t need the release. Bill was fiercely jealous, although he and Kico remained part-time lovers, ensnared in a partnership that would never dissolve. In a corner of his mind, Bill welcomed the staff job because it would give him an escape. He never was much into alcohol or pot. Although he occasionally sniffed a line of coke, he preferred to use work to pull himself away from personal problems. The job also positioned him to work in Congress, the only elected job he felt mattered.

At night, when Kico was with his architect, Bill drove his Datsun to a desolate windswept hilltop set above the Castro District. From a craggy outcropping of Corona Heights, he could see the small, busy, gay enclave below and the tall skyscrapers of downtown set against a porcelain-blue sky. As the fog crept from the ocean and wound lazily through the high rises, a fear sometimes tugged at him. He couldn’t define it, so his thoughts would drift away again to the speeches that would need to be written.

H
ARVARD
S
CHOOL OF
P
UBLIC
H
EALTH
,
C
AMBRIDGE
, M
ASSACHUSETTS

Dr. Max Essex eagerly took the blood samples that arrived from a Japanese infectious disease ward to his lab. The experiments to detect antibodies to the Human T-cell Leukemia virus, or HTLV, were performed easily with reagents sent from Dr. Bob Gallo’s lab at the Division of Tumor Cell Biology of the National Cancer Institute. They yielded the expected results. Patients with infectious diseases in the ward, such as pneumonias and bacterial maladies, were three times more likely to be infected with HTLV than noninfected people. Essex was far less interested in what this meant for the Japanese than its implications for GRID. It proved that an infectious agent, particularly a retrovirus, was capable of engendering diseases by crippling the human immune system. The retrovirus itself could be transmitted, providing for an infectious disease of the immune system. HTLV, for example, could be transmitted in sex, through semen, or through contaminated blood products. Essex also hypothesized that some strains of this virus were more likely to induce immune suppression than others. Perhaps it was HTLV itself that was causing GRID.

Essex called Don Francis with the news. Bob Gallo’s lab, Francis knew, was already poking around the lymphocytes of GRID patients in search of retroviruses. Essex decided to spend the summer testing GRID patients’ blood for evidence of HTLV infection.

June 18

C
ENTERS FOR
D
ISEASE
C
ONTROL,
A
TLANTA

Although just about every scientist at the CDC was convinced that the cluster study gave them precisely the evidence they needed to show that GRID was an infectious disease, its release came with a deluge of qualifiers and maybes from CDC officials.

Ironically, it was Jim Curran and the CDC Task Force who were most terrified at the implications of the cluster study. For public consumption, however, Curran and Harold Jaffe reassured reporters that no evidence existed that GRID was an infectious disease. “The existence of a cluster provides evidence for a hypothesis that people are not randomly associated with each other, and the cluster is a sexual cluster,” Curran said. “It doesn’t say we have evidence of one person giving to another person, certainly. The alternative hypothesis on the cluster would be that it isn’t transmissible from one person to another. It’s just that these people are really members of a very small subgroup among whom it might not be unusual to have sex. This is the less likely of the two hypotheses. Yet I don’t think either should be discarded. We need to focus research into this. We’re not prematurely releasing information that’s not validated. On the other hand, we’re not holding back information that might have some important health benefits.”

Scientists accepted the information in the spirit that it was given. Most wanted to see more convincing evidence. Clinicians worried that such small clusterings among sexual contacts could lend credence to the toxic exposure theory because it was possible that one batch of bad drugs could have gotten into one crowd. Paraquat on one shipment of marijuana, for example, might have caused all these mens’ immune disorders if the pot made it across the gay air bridges between New York, Los Angeles, and San Francisco. Of course, this argument belied the random way gay men, particularly the bathhouse-oriented men who made up most of those in the clusters, chose their sexual partners. It wasn’t as though they were going to bed with each other because they were all friends. But the clinicians tended not to be sociologists, and the intricacies of the sexual 7-Elevens were lost on some of them.