Hold Tight Gently (24 page)

Mike continued to work closely with Sonnabend, though in Mike’s view they “had a very tortured relationship.” They had a doctor-patient relationship, a personal friendship, and a political alliance. Mike had a subtle and deep intelligence—and a writing style of absolute clarity—yet he considered Sonnabend “the most brilliant person I’ve ever met. He is completely eccentric. He thrives on chaos.” And though basically tender and caring, he could be prickly, irritable, and uncommunicative. But Mike never doubted that Sonnabend was the reason he was still alive.

Sean Strub—the founder and publisher of
POZ
, an important source of information about AIDS research and treatment—was also a patient of Sonnabend’s and also credits him with keeping him alive. Recently, Strub conducted a series of interviews with Sonnabend at his home in England, where he’s retired. Throughout the long sessions, Sonnabend made it clear that he’s continued, with some adjustments, to hold to the theory he’d outlined in the early 1980s. Emphasizing that infection and disease are not the same thing, Sonnabend did, and does, believe that every disease (as opposed to infection) is multifactorial in nature in the sense that one passes into the other depending on a variety of factors—the way the infection enters the body, the immune response of the host, varying genetic susceptibilities, the presence of other diseases in the host, nutritional factors, psychological states of mind, and so on. In Sonnabend’s view, the course of
all
infectious diseases is in that sense dependent on a wide variety of factors.

Many questions about the role of HIV remained unanswered. Some people were getting sick in the apparent
absence
of any trace of HIV. Ironically, Mike himself was, as he put it, “an HIV factory. One of the cell lines for HIV antibody tests comes from me. . . . I’m notorious among researchers in the city. Whenever somebody needs to culture active, live virus, they come to me.” Duesberg claimed that there were four thousand AIDS cases in which HIV was absent, but others found only 299 HIV-seronegative individuals with AIDS, and even that figure was subsequently lowered to 168. Other questions—perhaps inevitable in the early stages of research for any disease—that the
skeptics raised included: Why isn’t HIV found in many of the T cells it purportedly kills? Why do some HIV-positive people suddenly test negative—without any intervening treatment? Why do so many spouses of HIV-positive people remain negative, even when safe-sex techniques aren’t used? Does the “AIDS test” measure antibodies or the virus itself—and can one test positive for antibodies without having the virus?

It was a sign of Mike’s sophistication that he wondered what reasons, other than scientific ones, led someone to prefer one explanation for AIDS to another. What might be the political or psychological advantages to the choice made? He decided that, in his own case, the “killer virus” theory was too “disempowering.” He found the notion that those with HIV were “ ‘timebombs’—that all that matters is having or not having HIV—that once one is infected, nothing one does matters much since HIV is a conveyor belt leading inevitably to sickness and death”—too frightening for someone like himself, “a control queen.” He was also a temperamental skeptic with a knee-jerk distrust for “experts” and “authority”—in contrast, he felt, to the many “religious” gay men willing to suspend reason and logic and genuflect before “revealed truth.” Further, Mike believed that most gay people preferred the HIV theory because it held a virus rather than particular sexual practices responsible for the transmission of AIDS. He recognized, though, that putting the blame on a multiplicity of sexually transmitted diseases played into the hands of all the right-wing crazies who held the behavior of gay men itself responsible for their plight—and thus deserving of neither compassion nor adequate research funding.

Mike was even more adamant (as was Sonnabend) about rejecting the antiretroviral drug AZT when it first became known in 1985. Sonnabend read the study reports on AZT and was immediately suspicious of it. Among other things, he was struck by the number of deaths during the trial of participants who were on the placebo, not on AZT. What had in fact happened was that some participants in the study—by now sophisticated about trials—had been able to discern the difference between the AZT pill and the placebo, had sent their pills to commercial labs for analysis, and had gotten those taking the actual medication to share it. Despite the unreliability of the trial, the FDA proceeded to approve AZT in 1987.

Hailed for its ability to prevent HIV from replicating, AZT was widely prescribed and earned millions of dollars for its manufacturer, Burroughs Wellcome. Along with having potentially disastrous side effects, like anemia, it showed a short-term increase in T-helper cells for some—but did not extend life. Mike read deeply in the medical literature and concluded that the Phase 2 trials of AZT had been inept, the research conducted by “amateurs.” He pointed to a French study published in 1988 that concluded that the benefits of AZT were limited at best to a few months of additional life, and also to a Veterans Administration study that suggested AZT actually
shortened
life span.

Besides, Mike had begun to deplore the slogan—and actuality—of “drugs into bodies, meaning any drug into any body.” It was predicated, he felt, on what he called “the conveyor-belt conceptualization of AIDS”—on the cruel (and, he felt, unsupported) notion that once a person is infected with HIV, death became inevitable and therefore any experimental drug was worth taking even if the odds of it having any efficacy were low. To Mike that was the “equivalent of resorting to thermonuclear warheads to rid their homes of roaches, rather than starting first with less extreme measures”—like reducing risky sexual behavior.

Mike welcomed the birth in 1987 of the group ACT UP. “The blunt truth,” he felt, was that up to that point “the familiar cast of AIDS buffoons in charge of the federal AIDS response are third-string scientists: lethally arrogant, ignorant and inept; and in several cases, probably actionably corrupt. Those in charge of AIDS . . . have botched it hopelessly.” ACT UP, through militant direct-action protests, Mike felt, might well force the powers that be to speed up the drug approval process. Nonviolent direct action was decidedly in the American grain; it had been successfully employed both in the black civil rights struggle and in the protest against the war in Vietnam, and it had been a staple during labor struggles as far back as the late nineteenth century. During 1987–88, ACT UP’s first year of existence, it managed to mount some two dozen civil disobedience actions that effectively mixed anger and theater, put direct pressure on NIAID and the FDA—and achieved some notable results.

But Mike’s active opposition to the use of AZT put him at odds
with many of the most prominent members of ACT UP, as well as several other notable figures in the AIDs struggle: the federal AIDS czar, Dr. Anthony Fauci, who predicted that eventually all of the 1.4 million Americans with AIDS would need to take AZT; John James, the prestigious editor and publisher of the San Francisco–based newsletter
AIDS Treatment News
, which was the bible for many in the AIDS community; and Martin Delaney, founder of the respected Project Inform, who acknowledged “some problems” with AZT but nonetheless stood by it. As early as the May 1986 issue of
AIDS Treatment News
, James had written, “The general public, and even most AIDS organizations and activists, do not yet realize that we already have an effective, inexpensive, and probably safe treatment for AIDS”—namely, AZT.
¹⁵

The controversy over the drug would drag on for years. When Mike published his book
Surviving AIDS
in 1990, his publisher, HarperCollins, “begged” him not to include the chapter titled “The Case Against AZT,” but Mike held out against the pressure. It would only be with the rigorous “Concorde” study in 1993 that the efficacy of AZT for extending life was disproved and the position taken by Mike and other dissenters validated. When the results of the Concorde trial reached him, Mike deplored the “nauseatingly shameless recent attempts to rewrite history” and reminded people that “a majority of AIDS activists joined with federal researchers in brutally suppressing doubts about AZT and
aggressively
promoting so-called ‘early intervention’ ”; their advice had been to “get tested, and if you’re HIV antibody positive, and if your T-cells happen to fall below 500,
get on AZT right away
!”

The troubling questions that Mike, Sonnabend, and others had raised from 1987 to 1993 about whether AZT might actually
shorten
survival by destroying bone marrow and causing lymphoma had been shunted aside and those raising the questions denounced as uninformed fools. Mike’s detractors included those he called “key AIDS activists”—his allusion was to those members of ACT UP’s Treatment and Data (T&D) Committee who vigorously defended AZT and to its “star,” Mark Harrington in particular. The T&D Committee members had coalesced around the need to develop additional AIDS drugs but who in Mike’s opinion had settled “for being near the center of power instead of questioning whether the powerful person’s scientific output justified the power in the first place.” Mike had come to believe that
“the obvious and simple notion of PWA self-empowerment” had “mutated into the absurd belief that one opinion was just as good as another. Desperate and confused people with AIDS,” he wrote, “facing life and death treatment choices have been duped into believing that the opinion of a Marty Delaney, a Mark Harrington or a Michael Callen is just as good as the opinion of someone who has spent 20 years tending the sick and studying virology.”

As Mike himself came to acknowledge, his own early insistence on self-empowerment and his view that AIDS patients were
the
experts on the disease “had a hand in fomenting rabid anti-expertism,” had helped to influence the Harringtons and Delaneys to highlight their own considerable expertise and to emphasize getting “drugs into bodies.” As he put it, “I realize, looking back over my collective writings, that by excoriating establishment AIDS-think, I created the impression that there wasn’t any such thing as true expertise.” He felt that somewhere along the road, “the self-evident truth that the opinions and experiences of people
with
AIDS had value got twisted into the absurd notion that all opinions are of equal value,” whereas in fact the typical PWA could not evaluate complex pharmacological and toxicological questions.

In the years before the release of the 1993 Concorde study, Mike took a great deal of abuse—not only for his early stand against AZT but also for his disparaging reaction to what had become a burgeoning number of New Age nostrums. Given the lack of viable treatments for AIDS, it was understandable that some patients, most of them young and desperate to go on living, would resort to magical thinking and clutch at the robes of assorted spiritual gurus. The most prominent of these was Louise Hay, the self-proclaimed “author, lecturer, and metaphysical teacher.” She originally established her Church of Religious Science in New York City but then moved to the more receptive environment of Santa Monica, where she established Hay House. It came to have a staff of twenty-two, an office complex for which she paid $11,000 a month rent, and a storage warehouse for her books and materials that extended for several blocks.
¹⁶

Hay’s philosophy centered on the two-prong doctrine of “positive thinking” and “personal responsibility,” and her substantial group of followers took weekly “Hay Rides,” a mix of colonics, reflexology, nutritional supplements, and “visualizations.” She also wrote and sold
pamphlets and audiocassettes in which she urged people to forgo self-criticism of any kind and to substitute self-love and responsibility. In 1984 she published a full-length book,
You Can Heal Your Life
, subsequently appeared on countless national radio and television shows, and held seminars across the country. Central to Hay’s “philosophy” was the insistence that those who had a terminal illness had self-consciously
chosen
that illness—and needed to learn how to
un
-choose it. One prime technique was “mirror work”: seated before a mirror, one repeated over and over, “I love you.”

All of which made Mike (in his words) “curl my lip uncontrollably.” With Western doctors frequently sending their AIDS patients for radiation and interferon injections—all of it harmful, none helpful—Mike had enough contempt for Western science to at least sympathize with those AIDS sufferers who believed that at a minimum Hay’s techniques made them feel more hopeful and relaxed. He had been, after all, one of the earliest advocates of “self-empowerment.”

Yet he found Hay unbearably pretentious and mocked Hay House as “The Church of the Happy Face.” He also thought it outrageous for anyone to preach about “keeping the right attitude.” The implication of such an injunction was that those who got depressed about the death sentence hanging over them had only themselves to blame if they fell ill and succumbed. The further implication was that the thousands (it would soon be millions) who’d already died somehow hadn’t lived “correctly.” Not that Mike advocated whining—far from it. When he heard someone bemoan their fate—“Why me? Why me?!”—he was more likely than not to say “Come on,
girl
! You had to
work
to get this disease. It’s not like it tapped you on the shoulder one day while you were standing in line at the grocery store. Yeah traumatic, but let’s get on with it.”
¹⁷

From his many conversations with other long-term survivors, some of them taped, Mike concluded that the one characteristic common to all of them was
grit
. As he put it, “These people were all fighters, skeptical, opinionated, incredibly knowledgeable about AIDS, and passionately committed to living.” He was of course describing himself as well. Like most long-term survivors, Mike was all but uniformly skeptical about experimental drugs—and they kept surfacing, both in the underground and in doctors’ prescriptions. Year by year, as the number of those infected multiplied and then multiplied again, one “miraculous”
drug or treatment after another was invested with magical healing power: interferon, AL-721, rifabutin, catnip enemas, horse urine therapy, amino acid combos, Ayurvedic medicine, carrot juice, quinolinic acid, macrobiotics, NMDA, intravenous penicillin or ceftriaxone, Compound Q, trichosanthin, suramin—the list went on and on, as did the mounting desperation. By the early 1990s, various studies showed that 52 percent of all HIV-infected patients were on one kind of “unapproved” therapy or another.
¹⁸