And the Band Played On: Politics, People, and the AIDS Epidemic, 20th-Anniversary Edition (94 page)

There was also the question of what would happen to people who were infected with the AIDS virus but did not get one of the opportunistic infections that characterized the CDC definition of the syndrome. Jim Curran noted that people whose immune systems are artificially suppressed for transplant operations later exhibit far higher rates of cancer. Combine this statistic with the fact that the virus fed on the nervous system, and, Curran concluded, “The aging of an infected population means more cancer, neurological disorders and other infections from immune suppression among people infected with HTLV-III.”

The AIDS diseases themselves were, in the most overworked metaphor of the AIDS epidemic, only the tip of the catastrophic iceberg that would haunt the United States for decades to come.

The extensive reports on the international epidemiology of AIDS also boded poorly. Harold Jaffe and Andrew Moss presented data from the San Francisco hepatitis B study that found the virus was present in the blood of 4.5 percent of study subjects in 1978, 20 percent in 1980, and 67 percent by late 1984. In other words, they noted, a substantial number of gay men were infected with the virus years before people even knew the problem existed.

Studies on the prevalence of AIDS infection throughout the nation underscored this apprehension. In Pittsburgh, a city with a relatively low incidence of AIDS, 25 percent of gay men in one study were infected with the virus, and an additional 2 percent of local gay men were being infected every month. A Boston study found that 21 percent of a sampling of gay men were HTLV-III positive. To a large extent, all these studies were biased by the fact that subjects were selected from more sexually active men who went to VD clinics. In San Francisco, for example, only about 40 percent of a randomly selected sample of gay men were infected, compared with the 67 percent infected in the hepatitis cohort. All the studies indicated the dramatic inroads the virus had made into other cities, very few of which had mounted any campaign for AIDS education and prevention.

There was disquieting evidence that the virus was spreading among heterosexuals as well, albeit much more slowly. In one Manhattan study of 300 young, sexually active heterosexual men, 3-4 percent were antibody positive. Most significantly, none had engaged in gay sexual activity or in drug abuse, although they were far more likely to have had sexual relations with a female intravenous drug user than study subjects who were antibody negative. (As in virtually all of the heterosexual studies, however, the use of prostitutes apparently did not correlate with whether people were infected.)

Meanwhile, studies of Haitians, who had just been dropped from the CDC roster as an official risk group, had largely solved the mystery of how they were infected. The high rates of infectivity were linked to the sharing of needles and heterosexual promiscuity. In Zaire, the virus was so widespread that scientists had a hard time constructing studies on risk factors. It was difficult to find a control group that was not infected.

The studies of infection prevalence all pointed to the need for better clinical treatment of AIDS patients, if for no other reason than that there would be so many patients in the years ahead. In his address to the conference, Dr. Paul Volberding noted that “the quality of AIDS patient treatment in the nation has not kept pace” with scientific research on AIDS. He challenged other cities “to take AIDS half as seriously as San Francisco has” and start coordinated treatment programs like those at his AIDS Clinic.

As if to give statistical basis to Volberding’s entreaty, the CDC reported that AIDS had become the fifth leading cause of death among young, single men in the United States, after accidents, homicide, suicide, and cancer. In Manhattan, however, AIDS was responsible for more years of lost life than these other four causes of death combined. The cost to society was skyrocketing as well. The CDC calculated that hospital bills and lost wages and benefits of the nation’s 9,000 AIDS patients had already amounted to $5.6 billion. Within a few years the cost to society would begin to approach the $50-billion-a-year price tag of cancer or the $85 billion in health care cost and lost wages that stem from heart disease.

As if all this bad news were not enough, the conference laid bare the problems that continued to retard AIDS research. On its first morning, both Luc Montagnier and Robert Gallo delivered lectures that were largely extensions of the scientific politicking that consumed AIDS virology. Even though Gallo declared that the nationalistic tenor of scientific infighting was “science debased, science degenerated,” he devoted much of his talk to explaining why his AIDS virus was a member of the HTLV family. A few weeks earlier Gallo had tried to explain away the surprising genetic comparison between LAV and HTLV-III by saying that the Parisian gay man from whom LAV was culled had had sexual contacts in New York, implying that he had picked up the same strain of the virus that Gallo would later isolate in Bethesda.

Luc Montagnier followed Gallo’s talk with a discourse on why LAV was not a leukemia virus but was a member of the lentivirus family. The lectures on retroviral taxonomy accentuated the intercontinental scientific warfare that subsequent handshakes between Gallo and Montagnier could not belie.

The most discouraging note, however, was not struck by battling researchers or depressing studies but by the Health and Human Services Secretary, Margaret Heckler, who came to deliver the conference’s keynote address.

In halting and sometimes confused language, Heckler stumbled through her twelve-page speech, recounting the complicated virological issues that scientists needed to confront with AIDS. Even the phonetic spellings of the technical AIDS terms in her text did not help Heckler pronounce the words right. This problem was less embarrassing than the fact that she bothered to discuss such issues at all.

Scientists hadn’t crowded the auditorium so they could hear the administration’s cabinet officer for health affairs talk about arcane matters of retroviral replication; they wanted to know what the Reagan administration planned to do about it. What kind of money could Heckler promise to AIDS research? When would the government start financing AIDS education? Heckler only promised that “AIDS will remain our number-one public health priority until it has been conquered.”

In her only departure from her prepared text, Heckler added, “We must conquer AIDS before it affects the heterosexual population and the general population…. We have a very strong public interest in stopping AIDS before it spreads outside the risk groups, before it becomes an overwhelming problem.”

The statement infuriated organizers from AIDS groups who considered AIDS already an “overwhelming problem” and did not consider it a priority of AIDS research to stop the scourge only “before it affects the heterosexual population.” Moreover, many gay leaders wondered who had determined that homosexuals were not part of the “general population” that so concerned the Secretary.

Within minutes of the conclusion of the address, gays were organizing a petition campaign to protest the comments, while the red-faced Secretary confronted an incredulous press corps. When pressed as to who determined AIDS funding levels, Heckler insisted that spending was “determined by scientists’ requests.” A reporter brought up the difficulties that Edward Brandt had faced in accomplishing this goal, but Heckler countered, “Ultimately, Dr. Brandt did win.”

The press conference came as a rude awakening for journalists who had largely believed administration rhetoric about its “number-one health priority.” The priority clearly was based on how much AIDS would affect heterosexuals.

April 17

Edward Brandt was given an ovation usually reserved for a returning war hero as he approached the podium for his keynote address at the final plenary session of the AIDS conference. Gay leaders applauded him as one of those rare people who had risen above political perspective and background to truly want to join the AIDS battle. Researchers recognized him as the person who had fought for funding against a recalcitrant administration. Aware of the controversy that had swept the conference in the wake of Secretary Heckler’s comments about the “general population,” Brandt said, “The fact that the people who are at risk for developing AIDS are human is enough to command the attention of all people.”

Brandt endorsed voluntary testing of high-risk groups, saying that the nation “must make progress at a faster rate” against the disease. He added that confidentiality guarantees should be in place as well because “numerous groups would create enormous pressure to report the names of people with the disease.”

As for the past, Brandt conceded, “I don’t think we were as effective as we should have been in the early stages of this epidemic. There must be a mechanism for emergency procedures to deal with epidemics such as AIDS without sacrificing scientific standards. A continuing examination of our response capabilities is necessary…. Throwing money does not solve problems such as AIDS. Starving efforts don’t help the situation either.”

As for the dark visions of the future, however, Brandt recommended calm, and he closed the session with a citation from his favorite book, the Bible.

“This too shall pass.”

April 21

P
UBLIC
T
HEATER
,
N
EW
Y
ORK
C
ITY

A thunderous ovation echoed through the theater. The people rose to their feet, applauding the cast returning to the stage to take their bows. Larry Kramer looked to his eighty-five-year-old mother. She had always wanted him to write for the stage, and Kramer had done that now. True,
The Normal Heart
was not your respectable Neil Simon fare, but a virtually unanimous chorus of reviewers had already proclaimed the play to be a masterpiece of political drama. Even before the previews were over, critics from every major news organization in New York City had scoured their thesauruses for superlatives to describe the play. NBC said it “beats with passion”
Time
magazine said it was “deeply affecting, tense and touching” the
New York Daily News
called it “an angry, unremitting and gripping piece of political theater.” One critic said
Heart
was to the AIDS epidemic what Arthur Miller’s
The Crucible
had been to the McCarthy era.
New York Magazine
critic John Simon, who had recently been overheard saying that he looked forward to when AIDS had killed all the homosexuals in New York theater, conceded in an interview that he left the play weeping.

The formulation of AIDS public policy, whether local or federal, had never been animated by rational forces, and nothing proclaimed this truth like the impact
The Normal Heart
had demonstrated in recent weeks. With his drama, Larry Kramer had succeeded where the reasoned pleas of researchers and experts had failed, bringing the issue at last to the forefront of civic issues.

Just hours before the first preview performance, as photocopied scripts of
The Normal Heart
circulated among the city’s news organizations, Mayor Ed Koch hurriedly called a press conference to announce “a comprehensive expansion of city services” for local AIDS patients. Koch shifted responsibility for AIDS from Health Commissioner Sencer to Deputy Mayor Victor Botnick and instituted the plans for coordinated care and long-term facilities that had been proposed years before by AIDS clinicians. Included in the new $6 million program were pledges of expanded home and hospice care, day-care programs for children with AIDS, and funds for ten interdisciplinary patient care teams at hospitals with large AIDS caseloads. The initiatives were a small fraction of what a city with one-third of the nation’s AIDS cases needed, but it was a start.

In announcing the programs, Koch, who was up for reelection in six months, was characteristically combative. Rather than admit to any past shortcomings in AIDS funding, the mayor claimed the city was already spending $31 million on AIDS, or about 3,000 percent more than Koch’s own health commissioner had dubiously claimed in AIDS spending six weeks before. (It turned out that Koch was including in this expense the cost of every AIDS patient residing in a city hospital, expenses that could only be deferred if the city broke the law and evicted AIDS patients from every room. San Francisco and other cities kept no comparable statistics.) With braggadocio, Koch claimed that his new plan was so good that San Francisco might ultimately imitate New York’s response to AIDS. He dismissed suggestions that the city needed to do more to educate people, both straight and gay, about AIDS. “I think we’ll find out that the city is well informed,” he said.

Koch directly answered the charge in
The Normal Heart
that he, a bachelor, had avoided a high profile in the epidemic for fear that his own life-style might be questioned: “Regrettably in our society, one technique used in order to seek to slander an individual is to simply accuse that individual of homosexuality. These charges are made even more frequently if the person is a single individual over the age of forty and unmarried. It is an outrageous charge because in many cases it is untrue and, even if true, is irrelevant.”