© Wendell Ricketts, 1994, 2003. All rights reserved.
First published in Out, April 1994, pp. 100-102, 128-129.
Living on the Edge:
Long-Term "Survivors" of AIDSONE OF THESE DAYS, SWEARS COLUMBUS, OHIO-BASED DANCER and graphic designer Micheal Milligan, he's going to drop all his other projects and open up a T-shirt business. But Milligan's T-shirts won't be typical day-at-the-beach wear--and they won't be for the faint of heart. One of Milligan's favorite designs, for example, parodies the familiar tourist souvenir: "I Have AIDS," it reads, "And All I Got Was This Lousy Handicapped Parking Sticker." Proclaims another: "AIDS Weight-Loss Plan--Ask Me How!"
Across the continent in San Francisco, John Tally, a 37-year-old lawyer who ran a successful immigration practice until he went on AIDS-related disability in February 1992, was struck by a similar inspiration. Tally decided to have a half-dozen prototypes printed up to give to friends. The one that draws the most gasps features a graph of Tally's steadily declining CD4 count, including his "projected date of departure" in mid-1994, and declares, in red letters on a pastel field: "I'm Having A Near-Death Experience. How's Your Day?"
In addition to sharing a penchant for a certain kind of "gallows humor," Milligan and Tally are both, by at least one definition, long-term AIDS survivors--although neither one is particularly comfortable with the term. For although they've battled illness for years, they've only recently become "official" people with AIDS.
Tally tested positive for antibodies to HIV in November 1985; in January 1990, his CD4s fell below 200 for the first time, although he remained in relatively good health. But low t-cells alone weren't enough to fulfill the official Centers for Disease Controls' narrow AIDS definition in 1990, and Tally wasn't diagnosed until he contracted contracted Pneumocystis carinii pneumonia nearly three years later.
During a surreal period in 1992 when activists and CDC officials debated whether or not CD4 counts below 200 constituted "real" AIDS, Tally used to joke: "As of two weeks from now, if the new definition goes into effect, I will have had AIDS for over two years. But if it doesn't, then I don't have AIDS anymore."
Like Tally, Milligan tested HIV-antibody positive in 1985; his CD4s fell to 150 in 1988 and have steadily continued to drop (his most recent count was 7). Yet despite years of declining health that has often kept him from working or performing, Milligan wasn't officially diagnosed until January 1, 1993--when Tally's joke became reality and the latest revision of the CDC's AIDS "surveillance definition" went into effect.
AS THE EPIDEMIC ENTERS ITS SECOND DECADE, A SMALL BUT apparently growing number of men and women have, like Milligan and Tally, defied the common prognosis of death-after-diagnosis. Long-term survivors include both those with official, CDC-defined AIDS who have lived with the syndrome for years, and those who, after testing HIV-antibody positive, have lived up to 15 years without progressing to AIDS. According to various estimates, in fact, anywhere from eight percent to one-third of HIV-antibody-positive individuals may never develop AIDS. Yet another fraction may develop AIDS but never test positive for antibodies to HIV, a factor that baffles researchers.
For Milligan, however, who has battled AIDS-related illnesses for years, the long-term-survivor label is disconcerting. "Other people use that label for me," he says, "specifically, the research nurses and doctors at Ohio State University clinical trials," where Milligan has been a participant for several years.
In fact, says Milligan, "Everybody has been treating me like I've had AIDS for some time--from the language they use when they talk to me to putting the word 'AIDS' on my medical folders in five-inch red letters that you could see across the waiting room."
When it comes to calling him a "long-term survivor," however, Milligan says, "They use it in a sense like you would use the term, 'old timer' or 'war veteran.' I've seen [the clinical-trials program] move, physically, within the building three times, and I've gone through six research nurses. So I'm considered a veteran." Yet by the government's official reckoning, he is a relative newcomer.
For Milligan, years of survival have also meant the dubious honor of becoming what he calls an "AIDS Poster Boy." As one of the only visible long-term survivors in Columbus, Milligan has done more than his share to spread the long-term survivor message in his own area, granting scores of interviews and making countless presentations before university classes and community groups.
One result of that effort, however, says Milligan, is that "I'm often told that I'm a source of inspiration and strength for people who are both HIV infected and affected"--the kind of reaction, he puns, that makes him feel "like 'St. Joan of A.R.C.'"
But the image also makes Milligan angry, because, he says, "people don't really see me. As a dancer, I've always been identified as the guy with the beautiful skin, great teeth, beautiful blonde hair, gorgeous legs and cute butt. Well, the teeth are still there. But I've only had one person tell me that I looked sick. I think there's a certain level of, 'I don't want to deal with this' that people have in the midwest."
Although the phrase "living with AIDS" has become a kind of politically correct cliche in some circles, for many men and women it reflects a more profound reality: the significant emotional, physical, and even political struggles they undergo on a daily basis.
Says Milligan, "The public knows a lot about what happens when someone first [tests positive for] HIV or gets a diagnosis of full-blown AIDS," he says, "and they have a real good idea of the last stages of the illness. But that middle area--which now lasts a decade at least--they don't know much about. So with each new symptom or funny rash or lesion or trip to the hospital, people get their emotions all in a turmoil. Then you come out, and everything is sort of on a plateau for a while, and then it happens again. And it keeps going. It's like the child who cried wolf.
Milligan's experience underscores the either/or lens through which long-term survivors are often viewed: as superheroes on the one hand or, on the other, as a kind of ticking time bomb. But is either image true?
After Milligan went into the hospital for the first time in July 1993, he noticed a subtle change in the attitudes of both his friends and his doctors. "I had let them down," Milligan confirms. "I was threatening the long-term-survivor niche they had put me into, and they couldn't look at me with the same 'Knight in Shining Armor' image. I was becoming tarnished."
Aldyn McKean, the 45-year-old veteran ACTUP New York member and long-term survivor who addressed the opening session of the Ninth International Conference on AIDS in Berlin last July, acknowledges that people do sometimes feel disappointed when their favorite "poster child" falls ill. But that, McKean says emphatically, "is their problem."
Himself a long-time AIDS "poster boy," McKean first began experiencing immune-system problems in 1980; his t-cells have hovered between 100 and 200 since they were first analyzed in February 1983. Throughout the 80s McKean remained healthy and, even by activist standards, was a dynamo, working to develop treatment agendas for PWAs.
Early last November, however, McKean was suddenly hospitalized with a blood infection that seriously damaged his kidneys. For more than a week, it was unclear whether he would live. Six weeks later, McKean went home, but his health status had changed dramatically. He now undergoes daily dialysis and, although he is back at ACTUP meetings, is no longer the picture of health that many associate with long-term survival.
For some, McKean's sudden illness may have challenged the message of hope that underlies long-term survival, but McKean was ready for such an eventuality. People often ask him, McKean explained some six weeks before his hospitalization, "Whether [it isn't] dangerous to present yourself as a long-term survivor and raise hopes. What happens if, after you've done that, you get sick and decline?'
"Whatever happens to me at this point," McKean says, "it's clear that I have done well enough for long enough that the take-home message from my experience with this virus, if you will, is that it is possible to do well for a long time. And that will not change if my health should suddenly deteriorate."
Milligan, however, takes a more ambivalent view of long-term-survivor celebrity. "I'm constantly thinking about how I'm going to be remembered," he says, "and I have this awful feeling now that part of the way that I'm going to be remembered is the longevity with which I lived with this illness. In people's minds, I fear that is replacing the active Micheal, the pre-AIDS Micheal. In a big way, I'm a real different person now, and I'm not sure I want to be remembered as somebody who hung around for a long time with a chronic disease."
FOR MANY ACTIVISTS, THE 1993 INTERNATIONAL AIDS CONFERENCE in Berlin came as a signal that researchers were finally attuned to what veteran ACTUP New York member Aldyn McKean characterizes as a long-unheeded cry from people with AIDS: "Study us!" McKean, a 45-year-old former marketing consultant, made history at the conference with a wildly applauded keynote speech in which he exhorted scientists to learn from the experiences of people with AIDS. It was the first time that a long-term survivor had ever addressed the world scientific community.
"Long-term survivors were this year's hottest topic," wrote McKean after the conference. So much so, in fact, that long-term survivorship became a kind of unofficial conference theme--a positive note amid a chorus of bleak reports about treatments.
Explained McKean in an October interview, "From the beginning of AIDS activism, people with AIDS have been saying that there is a need for a broader range of research into this disease. Focusing attention on people [who] are living long term with HIV is something I've been screaming about for some five years now." The apparent shift in the direction of research efforts, McKean adds, "is, at least in part, a result of hard work over the last few years by ACTUP, TAG, and other activists."
Indeed, McKean maintains, activists have for some time been pushing for research into the clues that long-term survivors may provide about the disease processes involved in AIDS. ACTUP New York Treatment and Data member Mark Milano, like McKean, decries what he calls the medical establishment's and pharmaceutical industry's "obsession with having an etiological agent and therefore with having drugs to address that agent." That "obsession," in fact, has meant that developing a thorough understanding of AIDS pathogenesis has consistently been neglected in the rush to find ways to detect and kill HIV.
Milano, who is an AIDS educator for the New York State Department of Health and one of the prime movers behind the Barbara McClintock Project to Cure AIDS, adds, "We need researchers to find out what is happening in our bodies--how we actually get sick. People with HIV or AIDS [should] be the fonts of information, rather than some virus in a test tube." Continues Milano, "What matters is not so much studying long-term survivors per se. What matters is studying people living with HIV, and that's what hasn't been done."
At Berlin, on the other hand, long-term post-AIDS-diagnosis survivors, together with the group that some call "healthy seroconverters," were the subject of intensive study by researchers seeking clues about a disease that remains, in significant ways, as mysterious today as it was a decade ago.
In fact, in marked contrast to the eight previous international conferences--the Berlin conference featured four regular sessions, one satellite session, a press conference, a "Meet the Experts" panel, and nearly a score of paper presentations--in addition to McKean's opening speech--that addressed aspects of long-term survival with HIV and AIDS.
Among the more intriguing proposals discussed at Berlin was the suggestion that some HIV-antibody-positive men and women may have a genetic advantage that allows them to remain healthy. Another hypothesis is that the interplay between two branches of the human immune system--antibody versus CD4 response--may be responsible for delaying or speeding up the onset of AIDS.
Working with men initially recruited in 1978 as part of the San Francisco City Clinic Cohort study, Dr. Susan Buchbinder proposes that certain genes, which control the structure of human leukocyte antigen (HLA) molecules on the surfaces of cells, play a role in the body's ability to "present" HIV proteins to CD8 cells, including "natural killer" cells, which can attack them. In certain individuals, HLA molecules may more easily "grasp" HIV proteins and, in turn, make them easier for the immune system to identify. At least eight percent of the 593 men in the City Clinic Cohort with well-defined dates of seroconversion are what Buchbinder and her colleagues call "healthy long-term positives": CD4 counts over 500 despite being HIV-antibody positive for 10-15 years. Buchbinder believes these subjects have a genetic advantage that keeps them from getting sick.
Similarly, virologist Frank Plummer has followed a group of Nairobi, Kenya prostitutes who remain HIV-free despite hundreds of "unsafe" sexual contacts annually with male clients who Plummer believes are carriers of HIV. Many of the prostitutes have HLA genes that are similar to those identified in Buchbinder's research. Interestingly, HLA genes also play a role in other immune diseases such as lupus and arthritis.
The research of University of California doctor Jay Levy, meanwhile, suggests that CD8 T-lymphocytes, one class of t-cell, may suppress the replication of HIV within cells without killing the infected cell. His work, and that of others, points to the possibility that a cell-mediated immune response is more effective than antibodies in controlling HIV. Related work by National Cancer Institute immunologists Mario Clerici and Gene Shearer describes a "feedback loop" between two "arms" of the immune system: the TH1 arm (or cell-mediated response, effectuated by CD8 cytotoxic cells) and the TH2 arm (which produces antibodies). Communication and cross-regulation between the two arms seems to be accomplished by chemical messengers, called cytokines, of which only a few of possibly hundreds have been identified. One theory is that the immune responses of some individuals--those who become ill more quickly--are either naturally predisposed toward, or become locked into, the TH2 mode.
On another front, San Francisco treatment activist Billi Goldberg, together with Charles Caulfield, a journalist and lecturer who was diagnosed with AIDS nearly 10 years ago, are co-authors of The Anarchist's AIDS Medical Formulary: A Guide to Guerrilla Immunology, scheduled to appear in 1994. Their book evaluates treatment research and, in particular, lays out a program of immune boosting that Caulfield and Goldberg believe holds significant promise against AIDS: dinitrochlorobenzene or DNCB.
Says Caulfield, "People who maintain cell-mediated immunity rather than antibody immunity are the ones who survive this disease, and DNCB is the most potent inducer of cell-mediated immunity known to man. CD8 t-lymphocytes are the mechanism of the cell-mediated immune cascade, and people with high numbers of activated CD8 t-lymphocytes are surviving. Treatment strategies based on boosting cell-mediated immunity and [on the activation of] CD8 cells are going to be where it's at."
Dr. Toby Dyner, a member of San Francisco's Community Consortium and a physician with a large AIDS-related practice, has some general cautions for anyone drawing conclusions based on the limited medical information available on long-term survivors. "It's the phrase 'where it's at' that gets us into trouble every time," says Dyner. "It's not an issue of this person understands the science and that person doesn't. Immunology is extraordinarily complicated, and the infectious process in AIDS is itself immensely complex. What's dangerous is a kind of reductionism [of the research literature]. If you come with an agenda, I fear you'll always find what you're looking for."
AS WELCOME AS IT WAS TO ACTIVISTS AND MANY OTHERS, THE NEW attention to long-term survivorship evidenced by the Berlin meetings did not come without controversy. To begin with, in a routine that is now a familiar part of AIDS-conference planning, months of political wrangling were required between the office of the conference chair in Berlin, ACTUP chapters in Germany and the United States, the Global Network of People with AIDS, and the International Coalition of AIDS Service Organizations, among others, before the various interests could agree to allow McKean to address the conference.
More significant than the predictable conflicts between activists and researchers, however, is the recognition that the new scientific and political spotlight on survival is fueling a growing demand that basic terms be clarified and that underlying, even long-held assumptions about AIDS be re-examined. The discussion of long-term survivorship itself, that is, has raised a troubling question: "Long-term survivors of what?"
For the first time in years, questions about scientific "givens"--such as Robert Gallo's 1988 assertion that "HIV kills like a truck"--and about the parroting of AIDS "facts" by AIDS-service organizations are being reopened. And all of that suggests one thing: This year's "hottest topic" is in danger of being doused by the same in-fighting, activist power-jockeying, and scientific Balkanization that have characterized AIDS research, media coverage, and politics for nearly 12 years.
Long-term survivors, moreover, are indirectly forcing even activists to reassess familiar strategies: If not everyone with AIDS will die of it, that is, what is to become of such tactics as calling AIDS "genocide," of labelling public health officials and politicians "murderers," and of insisting that "any means necessary" are justified because, as Washington, DC ACTUP member Luke Sissyfag declared when he confronted President Clinton on World AIDS Day last December, "We Die While You Do Nothing!" The reductionist slogans of activism have often been both brilliant and efficient. But that doesn't mean they have always been true.
"For a long time, the people they call long-term survivors have been downplayed because, for AIDS activists, it's not a good thing," says Milligan, one of the founders of the now inactive Columbus chapter of ACTUP. "The more people that die, the louder they can scream that the numbers are growing and that it's a crisis situation and that something must be done. So I often feel caught in the middle. But it's a publicity thing. It's all about advertising and promotion."
McKean, however, ever the pragmatist, sees no conflict between the rhetoric of politics and the realities of AIDS. "It's clear that people are dying," he says. "The facts of this disease are still the facts. A minority of people do well for some reason, but that doesn't change the fact that most people are not still alive 15 years after exposure."
Such differences in perspective are typical of the disputes about political strategy, resentments over who is or isn't entitled to be called a long-term survivor, and even significant conflicts regarding the nature of AIDS itself that are emerging out of the new discourse on long-term survival.
Thirty-six-year-old Boston writer and activist G. Steven Rose puts it bluntly. "I think there's a lot of squirming around to explain why people are living so long," Rose says, "because the longer people live, the more hazy and unsure the whole 'HIV = AIDS = Death' paradigm becomes."
Rose is convinced that the gay movement "doesn't know what it would do if AIDS ever ended. AIDS is the best thing that ever happened to gay empire building. It is the milk and honey that finances and legitimizes [gay politics] and has created this whole class of AIDS millionaires, and massive organizations, and infrastructure that has pushed the gay movement onto the front page. I'm real glad that the gay movement has gotten somewhere but I say that AIDS is now such a part of it that no one wants to let go of it because it finances everything.
"Privately, I'd like to know what they talk about in their corner, swivel-chair suites at AIDS, Incorporated because I think they hate us. We ruin the sales pitch. The Quilt sells AIDS much better than Michael Callen does."
ACCORDING TO THE CDC, A LONG-TERM SURVIVOR IS ANYONE WHO has lived twice the median survival time after an AIDS diagnosis. Currently, that works out to a total of about three years. Despite what we've been encouraged to believe about the reliability of medical methodology, however, AIDS diagnosis isn't an exact science. In fact, it's a moving target. And that's a problem because virtually all statistical and research methods rely on AIDS diagnosis as the signal to start the survival clock. Knowing how and when AIDS is commonly diagnosed, then, is crucial to understanding predictions about long-term survival.
The CDC's definition of AIDS, of course, can be changed by official vote. That has already happened twice--in 1987 and 1993--in part because of a need for compromise between the demands of activists and the opinions of epidemiologists. Largely as a result of the new CD4-related criterion that went into effect at the beginning of 1993--a CD4 count of less than 200/mL or a percentage of less than 14 now qualifies a patient for an AIDS diagnosis--some 37,500 to 45,000 additional AIDS cases are expected to be reported in 1993 over the 50,000-60,000 previously projected for the year.
Even so, the current definition remains strict: For these 40,000-some individuals--including a significant number of women and IV drug users--survivorship points begin to accumulate only now, although there is no telling how many have been battling severe health problems or immune dysfunction for years. In the case of women diagnosed with AIDS on the basis of cervical cancer, for example, CDC AIDS criteria are satisfied only if the cancer has reached an "invasive" Stage III level in which lymph nodes are affected and the tumor has moved into uterine tissue or beyond.
Dr. Toby Dyner finds the new CD4-related criterion "frustrating." She points to two patients--one, a member of the San Francisco City Clinic Hepatitis-B cohort, showed HIV antibodies as early as 1979. Although his CD4s have hovered between 700 and 1000 for years, he has been in and out of the hospital frequently with various infections. A second patient, whose CD4s fell to 21 in 1986 and have stood at zero for two years, only experienced his first OI--and his first hospitalization--last summer. Well-known San Francisco AIDS doc Marcus Conant, similarly, reports more than a dozen long-term survivors--with CD4 counts of zero--among his patients.
In any case, Dyner explains, "We still have to wait for someone's CD4s to drop below 200. Someone 'merely' at 201 isn't 'eligible.'" But weren't significant numbers of patients caught in some sort of limbo before the new definition--seriously ill but unable to qualify for an AIDS diagnosis? "Yes," acknowledges Dyner, "and there still are."
On the surface, such distinctions may appear minor--but they mask an critical financial reason why the government resists broadening the AIDS definition: an official AIDS diagnosis qualifies a person for disability and Medicaid coverage as well as for access to preventive care.
For anyone without access to regular health care, meanwhile, who fears that homosexuality or drug use will be exposed by an AIDS diagnosis, or whose doctor is simply unfamiliar with AIDS, moreover, a potentially AIDS-defining condition can go unrecognized and untreated for months. Epidemiologists acknowledge such "reporting biases"--but it's unclear how seriously they skew survival statistics.
The concept of "median survival time, in addition, is itself problematic, although the official definition of long-term survival depends upon it. The frequently cited median-survival statistic--eighteen months--invites the assumption that the majority of people with AIDS live no more than a year and a half after diagnosis. But that isn't the case at all: The "median" figure actually means that fully half of AIDS-diagnosed people live longer than eighteen months. (In the series 3, 8, 11, 25, 46, and 72, for example, the median is 18.) Put in purely mathematical terms, one's chances of living longer than eighteen months after an AIDS diagnosis are one in two.
Finally, even if one holds the majority opinion that HIV causes AIDS, some clinical evidence of HIV infection (not merely exposure) should logically be required for an AIDS diagnosis--but such evidence is often not gathered. In a 1991 study of long-term survivors published in the Journal of AIDS, for example, 14 out of 40 AIDS-diagnosed, HIV-antibody-positive subjects were later found to be negative on HIV culture and negative for HIV antigen. Some members of the Committee for the Scientific Reappraisal of the HIV-AIDS Hypothesis, such as well-known dissident Dr. Peter Duesberg, believe there are actually thousands of HIV-free AIDS cases.
"Presumptive" diagnosis, finally--meaning diagnosis without so much as an antibody test--has always been allowed by the CDC. No one illustrates the pitfalls of presumptive diagnosis better than John Kuivenhoven, a gay San Francisco man who was hospitalized in 1986 for a serious, pneumonia-like respiratory infection. Although Kuivenhoven had never taken an HIV-antibody test and didn't have PCP, his doctors diagnosed him with AIDS and immediately put him on AZT and a half-dozen other prophylactic and experimental drugs. In a short time, Kuivenhoven became so ill he nearly died. After doctors noticed--six years later--that Kuivenhoven's t-cell count was unusually high for someone with AIDS, they ordered new tests. The result: Kuivenhoven didn't have HIV antibodies and he didn't have AIDS. In late 1992, Kuivenhoven filed suit against his doctors and Burroughs-Wellcome for destroying his health. His suit is still pending.
Ken Wythe-Dickinson is another case in point. A former "Mr. East Coast Leather" title holder, Wythe-Dickinson has had an AIDS diagnosis for nearly five years. He has not, however, ever had an "official" opportunistic infection; in addition, he may be HIV-antibody negative.
In January 1989, Wythe-Dickinson began having serious respiratory and skin problems that his doctors couldn't diagnose. Although Wythe-Dickinson had tested negative for antibodies to HIV six months earlier, his CD4s stood at 240. His doctors told him he had AIDS, prescribed AZT, and arranged for him to join a ddI study. After three months, Wythe-Dickinson felt worse. When he decided to abandon all traditional Western treatments, his doctors assured him he had less than a year to live.
More than four years later, Wythe-Dickinson is still on 100% disability, his CD4s have risen to 570, and he and his partner have begun publishing a free alternative-treatment newsletter, Survival Long Term, out of their home in Malden, Massachusetts. (His partner takes an HIV-antibody test about three times a year; his results have always come back negative.)
Says Wythe-Dickinson, "My opinion is that I do have the virus. I base that on how my physical limits have changed and [the fact that] I do get some of the basic symptoms--I have night sweats and I get sick without cause at times. I have weakness in my limbs, and forgetfulness, and a lot of respiratory problems, which I didn't have before. I think that I have AIDS but that I'm managing the disease. I have it under control."
Wythe-Dickinson has not requested--and his doctors have not offered--another HIV-antibody test.
G. Steven Rose stands at the other end of the spectrum. Rose tested positive for HIV antibodies in May 1987 and was diagnosed with AIDS five months later. But Rose isn't convinced he has AIDS at all. By the time he was diagnosed, he says, "I had been in an endless struggle to figure out what was wrong with my health for years and years. I was convinced I had chronic fatigue syndrome and wanted to be tested for that--but they wouldn't do it."
Instead, Rose was referred by a gay neighborhood health center, Boston's Fenway Community Health Clinic, to an AZT protocol evaluating early neurological illness. All Rose really wanted, he says, were anti-depressants, "but because I had HIV antibodies, no one took me seriously for one minute about depression or about chronic fatigue or EBV or any of it. They told me, 'We say you have early symptoms of neurologic AIDS.'"
After more than a year of finger-tapping, short-term-memory, and other neuropsychiatric tests, Rose's trial was aborted, and Rose waged a successful battle to gain access to the results of all the tests that had been run on him. "My t-cell counts were high the entire time," he says. "HIV cultures of my blood and spinal fluid were consistently negative, and I didn't show signs of any kind of cognitive problems. I thought, 'My god, what are you people doing here? I'm not losing my mind. The only thing you can base this [diagnosis of HIV-related neuropathology] on is that you don't like my personality.'"
Ironically, Rose has insisted that the words "long-term AIDS survivor" be stamped all over his medical records. "It is strange," Rose admits. "I claim that I was sucked in by the AIDS machine and that I questioned and resented my AIDS diagnosis from Day 1, and yet I was desperate to get under cover and taken care of for long-standing health and emotional problems. In a odd way, it worked, but not the way I wanted. When I got diagnosed with AIDS, I was a hotel desk clerk. I was absolutely broke. I never could have gotten the help I needed in life if not for [an AIDS diagnosis]."
At the same time, Rose says, "I don't even have the comfort of feeling securely that I really have AIDS. And when you take away the security and the safety of that paradigm--the construct that you're on a conveyor belt that ends in death--it's a freaked-out way of looking at life. My greatest fear is that I get dumped out at the end of this long, ugly tunnel, and I'm poor, I'm shattered, I'm devastated, I'm still sick, and I don't even have the cloak of nobility that dying of AIDS gives you. And I come out into this sort of bleak wasteland where I have no money, no Section 8 subsidy, no Medicaid, no nothing, because I don't have AIDS anymore."
EVEN FOR THOSE WHO HAVE CHOSEN NOT TO FOLLOW THE INS AND outs of AIDS research and politics, long-term AIDS survival has, for many years, meant essentially one name: Michael Callen. Following a severe bout of cryptosporidiosis, Callen was diagnosed in June 1982 with Gay-Related Immunodeficiency (GRID), an early term for the cluster of diseases that was soon after christened "AIDS." He had KS for more than six years and, since 1981, when his CD4 level was first tested, had never turned up a count higher than 200. Until his death on December 27, 1993, Callen was arguably the most famous and the longest-term survivor of an AIDS diagnosis.
A co-founder of the People with AIDS Coalition, the National Association of People with AIDS, and the Community Research Initiative, Callen has written and spoken extensively about long-term survivorship since the mid-1980s. His 1990 book, Surviving AIDS, with its interviews of long-term survivors, joined two volumes of Surviving and Thriving With AIDS: Collected Wisdom, a 1988 work, as the first compendiums of information by, for, and about people living long term with AIDS. He was, Milligan says, "a beacon of hope for a lot of us for a lot of years."
Despite Callen's credentials--and despite what Aldyn McKean described as virtual "showers of attention" on long-term AIDS survivors at the IXth International Conference--Callen wasn't invited to Berlin. In fact, although Callen says he attempted to broker an invitation to Germany, "all I got back were garbled messages saying we don't have any money and, anyway, we don't know who you are."
In the end, what bothered Callen most isn't his apparent snub at Berlin--"It's not like you launch an issue and it's yours forever," he acknowledges. But he was troubled by the possibility that his outspokenness on difficult issues has branded him an outsider among the new crop of long-term-survival "insiders."
Indeed, Callen's political stands had worked more than a few nerves over the years. In November 1982, for example, Callen and Richard Berkowitz touched off one hurricane with the appearance in the New York Native of "We Know Who We Are: Two Gay Men Declare War on Promiscuity," and another, six months later, when they published How to Have Sex in an Epidemic: One Approach. For the former, Callen was called "sex-negative" and "homophobic"; for the latter he was accused of trying to kill people by promoting promiscuity.
Then there's the fact that Callen had vehemently opposed the use of AZT from virtually the moment of its availability and, together with his doctor, Joseph Sonnabend (one of the better known AIDS "dissidents"), repeatedly questioned the "HIV equals AIDS" orthodoxy, insisting instead that equal attention be paid to "lifestyle" factors.
Callen was, in a word, controversial. In fact, said a spokesperson for San Francisco's Project Inform a few months before Callen's death, "Michael is too controversial. Besides, he's whiny. He gives people the wrong idea of what people with AIDS are like."
Still, love him or hate him, Callen remained one of the most significant and visible spokespeople for long-term survival, and he had a great deal to say about being, as he put it, "a dinosaur in a dinosaur graveyard."
During the last few months of his life, Callen was troubled by the way he saw scientists and activists tackling the concept of AIDS survival. He was especially incensed by the new three-category taxonomy of long-term survivors proposed at a NIAID-sponsored meeting in Bethesda, Maryland in February 1993: people who are HIV-antibody positive, who have not received an AIDS diagnosis, and whose CD4 counts remain above 500; people who have lived for years with low CD4s but remain clinically healthy; and finally, people who have repeatedly been exposed to HIV but who have not become infected.
The characterization of this third group as long-term survivors was so "repulsive" to Callen, he said, that when he read the report of the NIAID meeting, "I literally put the paper down and puked." Notably missing from the NIAID schema, of course, is the first group ever identified as long-term survivors: people with full-blown AIDS who have lived three years or more after diagnosis, an omission Callen found "so deeply offensive I can hardly breathe."
In 1984, Mark Milano joined the NIH's Multicenter AIDS Cohort study and, like several thousand others in similar studies across the country, can dependably date his seroconversion back at least that far. Because of recurrent health problems and "classically out of whack" t-cell subsets, however, Milano had received a diagnosis of "pre-AIDS" in January 1982. Since then, he has remained in good health. Says Milano, "I think we do wear it as a badge of pride, how long we have been fighting this thing. You feel battle-scarred, you feel like a warrior. Even though I haven't been dealing with the real intense illness that people with AIDS deal with, there is still a mental battle that you have to go through on a regular basis."
For people like Callen, however, who had literally been at the brink of death on more than one occasion, that "badge of pride" felt particularly hard-won. Before Callen retired from touring with the singing group, The Flirtations, he said that fans would often stay behind after concerts to talk with him about their health.
"Inevitably," Callen recalled, "queen after queen would come up and take my hand and say, 'I'm a long-term survivor, too.' And I would say, 'How long?' And they would say, eight years, nine years, fourteen years. And I would say, 'Really, what have you had?' And they would say, 'Oh, I'm just HIV-positive.' And by the end of my career, I was throwing absolute shit fits. I wound up saying, 'You're really trying to compare what you've been through with what I've been through? You're really going to use the same term and go after some sort of cheap emotional effect?'"
If Callen was troubled by the terminology of long-term survivorship--and by what he saw as the tendency of some to "take comfort in claiming a diagnosis that has meaning for a lot of people"--he wasn't alone. Indeed, the wrath of activists like Callen fell not so much on deaf ears, but on bureaucratic ones.
The growing body of research on long-term survivors, that is, has generated not only a new collection of medical lingo that people concerned with AIDS must master--cytokine disregulation, major histocompatibility complex genes, the TH1-TH2 "switch," syncytitium- and non-syncytitium-inducing viruses, humoral vs. cell-mediated immunity--but an impressive series of variations on the long-term-survivor label itself--healthy long-term positives (HLPs), non-progressors, slow progressors, sustainers, clinically healthy long-term immuno-compromised (CLICs), and others.
But even with new labels being tossed around, researchers and activists are no closer to agreeing on exactly which men and women belong in the long-term-survivor camp. Some use the CDC's official "two times the median post-AIDS-diagnosis survival time" criterion; others date survivorship from seroconversion and arbitrarily identify seven or ten years as "long-term" survival. Increasingly, moreover, researchers exclude from the long-term-survivor category those who only AIDS-defining condition is KS, since KS is now known to exist independently of immune-system dysfunction. (KS continues to be a life-threatening illness, however, which suggests that yet another category may lie ahead--long-term survivors of KS.)
In addition, although long-term survivors are typically assumed to be white, urban gay men, the fact is that women of color and drug users, including bisexuals and lesbians, were often excluded from earlier CDC AIDS definitions. The common research finding, moreover--that AIDS patients infected through IV-drug use survived as long as or longer than other groups--seemed to have little impact on mainstream consciousness.
Today, long-term survivors include Suzin Gartland, an activist with WORLD (Women Organized to Respond to Life-Threatening Diseases) a recovering drug addict who tested HIV-antibody-positive in 1985, and Liz Cunningham, an African-American lesbian diagnosed with AIDS in 1989 who volunteered to be photographed by Annie Liebowitz for the San Francisco AIDS Foundation's "Be Here For The Cure" campaign. Like Gartland, Cunningham is challenging the complexion of the long-term-survivor image. Some CFIDS activists, meanwhile, argue that the spectrum of disorders linked to chronic fatigue are similar enough to AIDS that distinctions between the two conditions are artificial.
Such confusion is echoed in mainstream media coverage of AIDS, where distinctions are frequently muddied between "long-term survivors" of HIV exposure or infection and those with an actual AIDS diagnosis. The fact that the terms "AIDS" and "HIV-positive" encompass a vast spectrum of states of vitality and illness, moreover, is also sometimes deliberately blurred--by journalists, by activists, by doctors, and by affected individuals themselves--for rhetorical and strategic purposes.
It's that kind of carelessness that gets John Tally hopping mad. "I have a problem with people saying they're long-term survivors when they're not," says Tally. "Anybody diagnosed prior to June 1985 [when HIV-antibody testing became widely available] was a presumptive diagnosis, not confirmed. People can purport to have had AIDS for 10 years, 12 years only because of a fluke in the diagnostic system in the early 80s. And yet the public believes they've survived. Well, there's no miracle about it: Either all they've had is KS, or they're positive but asymptomatic; so they've never had any immune problem. It's no longer unique to have had HIV for 10 years. Having a collapsed immune system for 10 years--now that would be a reason to put someone on Phil Donahue."
TALLY'S POSITION IS A COMPELLING ARGUMENT FOR THE
clarification of terminology, but, for many, the real sticking place in the long-term-survivor label is the word "survivor" itself. "Survivors," that is--of plane crashes or avalanches or even the Holocaust--are generally those who have left their trauma in the past. In that sense, no one has "survived" AIDS--been cured of, beaten, lived beyond it. At least not yet--and yet is the operative word.As Aldyn McKean stresses, "There are people who have lived 15 years with the virus and are still healthy. Of course, that is a fairly small percentage, but it may turn out that some people never die as a result of HIV. They accommodate it and live normal life spans. Until you've followed all of those people to the end of a normal life span, you can't say what the [outcome] is."
Mark Milano adds, "You see these damn charts with a line that goes, 'seroconversion, latency period, AIDS diagnosis, death.' It's like, fuck you, that doesn't apply to everyone. The way you survive the barrage of statistics and death predictions is by telling yourself, 'That's all true for them, but I'm special.'"
John Tally, however, doesn't merely label such thinking dangerous--he rejects the entire long-term-survival category. "There is no such thing as a long-term AIDS survivor," Tally insists. "The idea that you can live a long time [with AIDS] is very important, but that shouldn't exclude the reality that, at this point, it's 100% fatal and you should be dealing with death issues and what you want to do with the rest of your life. You don't have to delude yourself to have hope. You don't have to ignore reality to have hope. I don't see why we can't have both messages."
Michael Callen might have agreed with at least one part of what Tally says. "I actually believe that everyone with full-blown AIDS will likely die of it," said Callen, "because I see absolutely no reason to believe that anybody currently working on AIDS has the track record to justify any hope at all. I don't deny the possibility of extraordinary survival, but I've never seen it. But what my message really has been all along--and I realize how hugely misunderstood and misquoted this has been is that no one needs to die on cue. No one needs to swallow these spirit-sapping 18-month projections and die because of it. And no one needs to buy into that brain-sucking rhetoric: 'Well, [my t-cells are] 800 now, but as Marty Delaney so movingly says, the only co-factor that matters is time. And so they'll be 500 next year and they'll be 300 the year after that and then I'll be dead.'"
Adds Milano, "I first heard the 'only co-factor that matters is time' quote in 1987, and it was a horrible spin to put on it--that every year you live just eats away at your chance of being healthy, rather than showing that you're doing something right. Before I began to be able to discount [a lot what] I was hearing about AIDS, I found that really depressing."
Long-term AIDS survivors, it appears, are shattering not only expectations about mortality, but assumptions about the nature of survival itself. "What have you done to live so long?" ask researchers, friends, colleagues, and even strangers? For most long-term survivors, there's no pat answer: One man's miracle treatment is another man's poison; one woman's spiritual enlightenment is another's airy-fairy nonsense.
Michael Callen, a proud and public "bottom" who admitted to over 2,000 sex partners pre-AIDS and who ate junk food for years, made a mini-career out of interviewing long-term survivors and making their experiences public. In a June 1988 interview with Callen in Spin magazine, Celia Farber wrote, "[Callen] found and interviewed 20 [long-term survivors], one of whom had had AIDS for nine years, and asked them [to] what they attributed their longevity. Some said macrobiotics, some said Classic Coke, some said God, some said acupuncture, some said lipids. All said Hope."
Hope is, in a word, what Milano, Callen, and even Tally are talking about. Indeed, you don't have to own a stack of Louise Hay tapes to understand that the conviction that AIDS must be fatal has profound implications for day-to-day life and health. And that's one reason why activists like Callen and Aldyn McKean consider it essential for the experiences of long-term survivors to be made public: an antidote to the death propaganda. Summing up the credo of many long-term survivors, Aldyn McKean put it this way: "Just the fact that there are people who've lived with the virus for 15 years or who have lived with low CD4 counts for 10 years [is] a life-saving message."
For Anne Bloom, who, with her partner, Ginny Fowler, adopted Baby Sean in Alameda County, California in 1989, hope looks like an energetic little boy begging for "just five more minutes" on his roller blades. Although Sean is black and Fowler and Bloom are white, there is another important difference between them. Born to an addict mother who died of AIDS during his first year, Sean tested positive for HIV antibodies at birth; he received an AIDS diagnosis in January 1989. Sean is now six-and-a-half and has had no serious infections for five years. But Bloom confirms, Sean does worry about dying.
On a recent afternoon, she recalls, "one of Sean's friends, Kyle, asked me, 'Is Sean going to die?' So I turned to Sean and said, 'Sean, are you going to die?' and Sean said, 'Yes.' Then I asked, 'Is Kyle going to die?' and Sean said, 'Yes.' 'Am I?' And Sean said, 'Yes.' I told Kyle, 'We're all going to die someday. Sean might die sooner than the rest of us, but he might not.' At their age, death just means that Sean won't be around to be Kyle's friend anymore. So I tell him that we need to keep Sean healthy and strong so he can stay with us as long as possible."
Bloom adds, "Sean rides roller blades and he skateboards. He's cute and he's sweet and sometimes it's hard for me to find a balance between what I see when I watch him play and worrying about his lab results and the clinical picture."
Dr. Harvey Gochros, a therapist and social-work educator for more than 20 years, co-teachers one of the nation's first graduate-level course on AIDS at the University of Hawaii. Through his work with The LIFE Foundation, Hawaii's premiere AIDS-service organization, Gochros has, for seven years, offered individual and group therapy to people with AIDS and HIV.
For Gochros, one of his most vital counseling tasks is to encourage what he calls "realistic hope." Most important of all, he says, "is don't promise something you can't deliver and don't lie. To give people the hope that they're going to live to be 100 is bullshit. They can hope that they live relatively healthy and relatively longer compared to [those] in the past. A minority at this point, as far as we can tell, may live a normal life span. But I don't focus much on hope for long life. As to whether everybody [who has this disease] is going to die of it, I don't think anybody knows frankly."