And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (39 page)

At the next meeting of the working group of doctors that Willy Rozenbaum and Jacques Leibowitch had assembled a year earlier, Rozenbaum enthusiastically explained the Pasteur’s findings. Leibowitch was immediately doubtful that the Pasteur people had found anything but HTLV. By then, of course, the flamboyant doctor’s antipathy for the Pasteur Institute was well known. In the fall, Leibowitch had applied for an immunologist’s job at Pasteur Production, the commercial arm of the institute. He was turned down for the post and was still furious.

At the study group meeting, the scientists argued bitterly over the significance of the discovery. Rozenbaum felt the Pasteur Institute had found the cause of AIDS. Leibowitch was certain that nothing of any significance could come from Pasteur. The National Cancer Institute—now there was a major-league institution, Leibowitch said. As for Willy Rozenbaum, Leibowitch thought privately, he was like a child.

Across the country, the blood issue also was drawing battle lines among gay community leaders. A split had engulfed the Bay Area Physicians for Human Rights and its national parent group, the American Association of Physicians for Human Rights (AAPHR), after the Bay Area leaders revealed they would urge gay men to cooperate with the local blood bank in screening themselves out as blood donors. As a compromise, however, the Irwin Memorial Blood Bank did not directly ask whether donors were gay, instead inquiring only whether people giving blood were suffering from swollen lymph nodes, nightsweats, and other overt signs of immune deficiency.

At its national convention, AAPHR issued its national policy, calling for hepatitis B core antibody testing and opposing the elimination of gay men from the donor pool, except for those “who think they may be at increased risk for AIDS.” Said the AAPHR statement, “We object strongly to the attempts by some members of the blood products and banking community to identify gay men by questionnaire and exclude them from blood donation. These attempts are an unnecessary invasion of individual privacy and grossly misrepresent the issues to the American people.” In Washington, gay leaders were successful in persuading Red Cross officials to back off from their plans for sexual-orientation questions and, instead, to work with gay activists to develop a donor policy the gay politicians could support. One longtime veteran of gay politics, Frank Kameny, said he would “advise fellow gays to lie” if the local blood bank officials proceeded with screening.

In New York, the National Gay Task Force rounded up virtually every gay leader in Manhattan to stand on the steps of the New York Blood Center for a press conference denouncing efforts to screen donors. As he scanned the group, Michael Callen, a leader in the newly formed New York chapter of People With AIDS, relished the irony of the press conference. He knew that virtually every gay man there had had hepatitis B and that most had engaged in the kind of sexual activities that put them at high risk for AIDS. Not one of them could in good conscience donate blood, Callen thought, and here they were, exuding self-righteous indignation at the thought that someone would suggest they did not have the right to make such donations.

The question of risk-reduction guidelines was even more problematical for gay groups. At its national convention, AAPHR released its tepid proposals for “healthful gay male sexuality.” Sensitive to concerns that the group not be “sex-negative,” the guidelines assured gay men that there was nothing wrong with having sex, but that they should check their partners for KS lesions, swollen lymph nodes, and overt symptoms of AIDS. It might be a good idea to have fewer partners, the guidelines also suggested tentatively. The Gay Men’s Health Crisis in New York had put the accumulated wisdom of homosexual physicians in one phrase: “Have as much sex as you want, but with fewer people and HEALTHY people.” Complicated considerations of asymptomatic carriers—the people who looked perfectly healthy while they deposited a dose of AIDS virus—were not weighed for the guidelines, even though they were well documented in the medical literature.

In San Francisco, the more cautious Bay Area Physicians for Human Rights was still holding committee meetings to wrangle over every phrase of risk-reduction guidelines. Some doctors were squeamish about the very idea of telling people what to do in bed. The remainder felt it best to take their time and be prudent so they didn’t say anything wrong. Meanwhile, calls still deluged the KS Foundation from people wondering what they could do to protect themselves. Foundation leaders could only suggest they call back, once the gay doctors finished their committee meetings.

In Washington, friends told Tim Westmoreland he was turning gloomy because of his propensity for warning them about their sex lives and AIDS. The disease was a problem of New Yorkers and San Franciscans, friends told him. Westmoreland started to feel like a guy talking airline safety in a crowded airport. In a guest editorial for the local gay paper, the
Washington Blade,
he wrote a long warning about the ramifications the epidemic could have for years to come. There may come a time when insurance companies refuse to insure gay men or try to eliminate AIDS diseases from insurance protection, Westmoreland warned. “To some extent the insurance industry exists to discriminate among risks and to pool or avoid them,” he wrote. For this, other gays denounced Westmoreland as an alarmist.

O
RLY
I
NTERNATIONAL
A
IRPORT
,
P
ARIS

The airline steward eyed the thermos warily while the handsome young scientist took his seat. Passengers craned to see from where the smoke was coming. Jacques Leibowitch explained to the supervising attendant that he was a scientist taking specimens to the National Cancer Institute in Bethesda. This was top-priority science. The smoke was only liquid nitrogen. No, he couldn’t open it. The young scientist’s charm prevailed and he settled into his seat, with the smoking thermos beside him.

Pasteur Production had paid his way to Bethesda, not to deliver these specimens, he laughed to himself, but to pick up the antibodies to HTLV for Drs. Luc Montagnier and Jean-Claude Chermann. Leibowitch also carried a letter from Montagnier explaining the French discovery.

Jacques Leibowitch desperately wanted to prove the Pasteur Institute wrong. He’d do anything he could to help Dr. Robert Gallo prove that his virus, HTLV, was the cause of this epidemic. Leaving nothing to chance, he had even taken biopsies of lymph nodes from one of his sister’s Zairian AIDS patients that he planned to hand-deliver to Gallo. Oh, how he loved getting one over on those assholes at the Pasteur Institute.

T
IJUANA
, M
EXICO

The holistic healers had promised that the amino acid and DMSO treatments would cure Gary Walsh. They had cured AIDS patients before, they assured him. Moreover, the medical establishment
knew
the treatments were effective; that was the very reason they were illegal in the United States, they said. Doctors would go out of business if they let people get about the business of really curing disease.

The reasoning appealed to Gary’s iconoclasm. In the days before leaving for San Diego, his hope burned fiercely.

He didn’t have a deadly disease, he told himself. That was a lot of bunk, he thought as he walked into the clinic for the first of his ten days of treatment.

Almost immediately, Gary felt better. The holistic practitioners told him that with the help of the amino acid injections, his healthy cells would consume his Kaposi’s sarcoma lesions. Sure enough, by the end of the regimen, it looked to Gary as though the lesions were getting smaller. Thank God, he thought. I’m going to live.

February 25

S
AN
F
RANCISCO

Marc Conant was not surprised at the letter he received from Gary Walsh in the morning mail; he’d seen this all before.

“My KS lesions are going away,” Gary wrote. “I’m feeling much better. The healthy cells are dissolving the cancer cells.”

Gary wrote that he might not need to see Conant again if the trend continued. He expected to recover.

Gary Walsh was not Conant’s first patient to go traipsing off to Mexico for a miracle cure. The amino acid clinics were making a killing from desperate AIDS victims seeking a reprieve from their death sentences. The fact that you had to leave the country for treatments rejected by the medical establishment only made them seem all the more tantalizing. Patients recently diagnosed with a fatal illness tended not to be wild about anything that smacked of official medicine.

Conant’s own psychologist, Paul Dague, had tried the amino acid route, going to the same clinic that was made famous by its promotion of laetrile for cancer patients. It was Paul who suggested the amino acid treatments to Gary. Other patients returned from healers, usually in Mexico, and chatted excitedly about how their lesions were disappearing even while Conant could measure a substantial growth in the tumors. It was all part of the process of accepting a terminal illness, Conant knew. First, denial.

For Paul Dague, one of the early well-known community organizers to contract AIDS, the search for a cure took one final bitter turn when, in the last days of his life, he flew to the Philippines for “psychic surgery.” Marc Conant visited Paul days before his departure. Although near death, Paul was sitting in a chair when he greeted Conant. He was forced to sit, Conant knew, because a Kaposi’s sarcoma lesion the size of a ping-pong ball was dangling on the inside of his throat. If Paul lay down, the lesion would fall into his windpipe, choking him. Conant thought it was particularly cruel that God would not even let the man lie down to die, that he would spend his final months always sitting.

Paul hesitated briefly after he told Conant about his travel plans for the Philippines, as though he were waiting for Conant’s blanket condemnation of such alternative therapies. Conant instead wished Paul the best of luck.

“I’m not going there for a cure,” Paul said. “I’m going for a miracle.”

March 3, 1983

D
EPARTMENT OF
H
EALTH AND
H
UMAN
S
ERVICES,
W
ASHINGTON,
D.C.

Throughout February, pressure had continued to mount on the federal government to move to protect the blood supply. The nine-month stall on a national blood policy, dating back to the discovery of the hemophiliac cases, could not be sustained. Sensitive to the demands of hemophiliacs, virtually all the private pharmaceutical companies had fallen in line with the National Hemophilia Foundation’s guidelines restricting donations from gay men and other high-risk groups. The federal government, meanwhile, had to steer its policy through turf wars between the Centers for Disease Control and the Food and Drug Administration, as well as the pressures exerted by blood bankers, easily agitated gay groups, and congressional representatives promoting their various interests.

The Centers for Disease Control took the hard line in their proposed guidelines, calling for both blood testing and mandatory exclusion of all people in high-risk groups, not merely the voluntary self-deferral the blood banks wanted. Taking its cues from the blood industry, the Food and Drug Administration favored more moderate restrictions. The blood bankers were worried that they would not have enough blood and would suffer economically if all gays were restricted; they also fretted about accusations that they would look like anti-gay bigots if all homosexuals were summarily rejected.

The government’s final recommendation was as broad a compromise as could be worked out. It was issued as the policy of the U.S. Public Health Service, the umbrella agency for the CDC, NIH, and FDA. “As a temporary measure, members of increased risk for AIDS should refrain from donating plasma and/or blood,” the guidelines said. High-risk people, however, did not include all gays, according to these guidelines, but merely those who were sexually active, had overt symptoms of immune deficiency, or had engaged in sexual relations with people who did. There would not be the hepatitis antibody blood screening that the CDC wanted. Instead, the guidelines called for studies to evaluate screening procedures. With the weight of the Public Health Service behind them, the American Red Cross, the American Association of Blood Banks, and the Council of Community Blood Centers had no choice but to announce that they would comply.

The Public Health Service guidelines came seven months after the CDC first had proposed policy for the AIDS blood problem in July 1982, and two months after “that horrible meeting” in Atlanta. Between that January 4 meeting and the March 4 publication of the guidelines in the
MMWR,
nearly one million transfusions were administered in the United States.

The Public Health Service pronouncements on AIDS also included the first risk-reduction guidelines ever issued by the federal government. The PHS saw fit to offer only two sentences of guidance to gay men eager to avoid the strange new disease, despite reams of data collected in the still-unpublished case-control study. “Sexual contact should be avoided with persons known or suspected to have AIDS,” the PHS wrote. “Members of high-risk groups should be aware that multiple sexual partners increase the probability of developing AIDS.”

That statement represented the sum total of the U.S. government’s attempt to prevent the spread of acquired immune deficiency syndrome among gay men in March 1983, more than twenty months into the epidemic.

C
ASTRO
S
TREET
, S
AN
F
RANCISCO

Gary Walsh picked through his pasta salad at the Village Deli on Castro Street, looking out the broad plate-glass windows at a passing parade of men, all buttoned up in thick wool jackets. Joe Brewer could see that the disease had skimmed the extra fat from Gary’s body. Where he was once cheeky, his face now displayed prominent cheekbones. Although Gary’s eyes occasionally flashed their old merriment, they were deeper set now, in gaunt sockets, making them look larger and more open.

Gary speared a spinach pasta curl on his fork and watched it slip around as he finally said what he wanted to say:

“What do you think of suicide with extreme illness?”

“I think it’s wrong,” said Joe, surprising himself at how automatic his answer was. “It’s a disrespect of the life force to end it. That’s playing God, to end it before it ends itself.”

“I don’t know,” Gary said, unconvinced.

After the meal, the pair made their way to Gary’s apartment on Alpine Terrace. Joe studied the cityscape that spread below the bay windows while Gary made coffee in the kitchen. Joe, of course, knew how bitterly disappointed Gary had been with the amino acid therapy. Gary had felt better for a week but, within days, the fatigue and aches had returned, and he had angrily canceled a check for $1,000 that was to be his final payment for the treatment. He hadn’t wanted to see any of his friends for days after that. He had moved from denial into depression, Joe thought. Gary would be better off once he got to anger.

Gary sat down on the couch and continued his thought. He had spent most of his life in pain, from the time he was hit by a car when he was seven years old. Finally, just a few years ago, he had found relief with corrective back surgery, but recovery from the surgery had required him to be bedridden for three months, again in chronic pain.

“I know all too much about pain,” Gary said, “and I might not want to follow this all the way to the end.”

Joe recalled those agonizing days after Gary’s back surgery and understood his point. Besides, it was Gary’s decision to make.

“All right,” Joe answered, reluctantly. “I’ll do whatever it takes to help you.”

March 7

N
EW
Y
ORK
C
ITY

“If this article doesn’t scare the shit out of you we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get…. Unless we fight for our lives we shall die. In all the history of homosexuality we have never been so close to death and extinction before. Many of us are dying or dead already.”

With those words, Larry Kramer threw a hand grenade into the foxhole of denial where most gay men in the United States had been sitting out the epidemic. The cover story of the
New York Native,
headlined “1,112 and Counting,” was Kramer’s end run around all the gay leaders and GMHC organizers worried about not panicking the homosexuals and not inciting homophobia. As far as Kramer was concerned, gay men needed a little panic and a lot of anger.

Kramer built his story around the burgeoning statistics, the fears of doctors who were at a loss as to how to handle the new caseloads, and the first rumors of suicides among gay men who preferred to die rather than face the brutal, disfiguring disease. He lashed out at the delays in grant funding by the National Institutes of Health and chided the CDC for falling behind on gathering epidemiological data. “There have been so many AIDS victims that the CDC is no longer able to get to them fast enough. It has given up,” Kramer wrote. “This is a woeful waste with as terrifying implications for us as the alarming rise in case numbers and doctors finally admitting they don’t know what’s going on. As each man dies, as one or both sets of men who had interacted with each other come down with AIDS, yet more information that might reveal patterns of transmissibility is not being monitored and collected and studied…. How is AIDS being transmitted? Through which bodily fluids, by which sexual behaviors, in what social environments? For months the CDC has been asked to begin such preparations for continued surveillance. The CDC is stretched to its limits and is dreadfully underfunded for what it’s being asked, in all areas, to do.”

On the local level, Larry Kramer attacked
The New York Times
for its scant AIDS coverage and the “appalling” job of health education conducted by city Health Commissioner David Sencer. Kramer’s sharpest barbs were directed at Mayor Ed Koch, “who appears to have chosen, for whatever reason, not to allow himself to be perceived by the non-gay world as visibly helping us in this emergency. Repeated requests to meet with him have been denied us. Repeated attempts to have him make a very necessary public announcement about this crisis and public health emergency have been refused by his staff…. With his silence on AIDS, the mayor of New York is helping to kill us.”

The gay community received no better marks. Kramer said that the New York gay doctors, as a group, have “done
nothing.
You can count on one hand the number of our doctors who have really worked for us.” And he noted that the only national gay newsmagazine, the
Advocate,
“has yet to quite acknowledge that there’s anything going on.”

“I am sick of guys who moan that giving up careless sex until this thing blows over is worse than death,” Kramer wrote. “How can they value life so little and cocks and asses so much?”

At the end of the story, Larry Kramer listed friends who had died, people like Nick, Rick Wellikoff, Jack Nau, Michael Maletta, and the two men he had seen that first day in Alvin Friedman-Kien’s office, David Jackson and Donald Krintzman. Kramer knew twenty-one people who had died—“and one more, who will be dead by the time these words appear in print. If we don’t act immediately, then we face our approaching doom.”

Larry Kramer’s piece irrevocably altered the context in which AIDS was discussed in the gay community and, hence, in the nation. Inarguably one of the most influential works of advocacy journalism of the decade, “1,112 and Counting…” swiftly crystallized the epidemic into a political movement for the gay community at the same time it set off a maelstrom of controversy that polarized gay leaders. Endless letters poured into the
Native,
denouncing Kramer as an “alarmist” who was rabidly “sex-negative” and was using AIDS to deliver his
post-Faggots
“I told you so.” Even as the issue sold out on Manhattan newsstands, Kramer laid plans for wider publication of the piece around the country, where it would prove to have a far greater impact on AIDS policy, particularly in San Francisco.

The New York AIDS Network timed the release of its own demands for city services to Mayor Koch to coincide with Kramer’s piece. “It must be stated at the outset that the gay community is growing increasingly aroused and concerned and angry,” its statement said. “Should our avenues to the Mayor of our City, and the Members of the Board of Estimate not be available, it is our feeling that the level of frustration is such that it will manifest itself in a manner heretofore not associated with this community and the gay population at large.”

To drive home the point, the
Native
printed a request for 3,000 volunteers to be instructed in civil disobedience such as sit-ins and traffic tie-ups to force city officials to confront AIDS concerns.

Two days later, on March 9, Mayor Ed Koch and Health Commissioner David Sencer hurriedly announced the formation of an Office of Gay and Lesbian Health Concerns under Director Dr. Roger Enlow, an architect of the low-profile handling of AIDS in the gay community. Dr. Enlow, gay leaders knew, would not rock any boats.