By Erin Sherbert
By Howard Cole
By Erin Sherbert
By Erin Sherbert
By Leif Haven
By Erin Sherbert
By Chris Roberts
By Kate Conger
Fifteen years ago this month, the first case of Kaposi's sarcoma in a young gay man was diagnosed in San Francisco. In the intervening years, AIDS has taken 15,580 more people in this city alone. Walk these sunlit streets, where even on the brightest day the shade is cool -- they who once lived here are everywhere, held in minds and hearts, in the echo of forgotten laughter, in the way the light falls against stone.
And yet, in this city of shadows, there is hope.
June 20, 1979, is an anniversary date for painter Rob Anderson, the day HIV first showed up in the blood that, running through his veins, gives him life. The windows of Anderson's painting studio on Third Street are almost as tall as the room is high, and light from those slices of sky falls onto the large canvas in the center of the room, tracing the sinews and tendons of a young man's leg. Anderson was 25 when he gave blood as part of a hepatitis B vaccine study at the old City Clinic south of Market; the blood, stored, was tested in 1985 as scientists tried to retrace the path of the new epidemic. Anderson is 42 now. His immune system is not impaired. He has no symptoms of disease.
"When there was this talk of everyone who gets HIV is going to die, I already had six years under my belt to let me say, 'Well, I don't know,' " says Anderson. "People like me were not even considered. We were like flukes."
As we enter into the second part of the second decade of AIDS, scientists around the country and the world are showing increasing interest in people who, like Anderson, test positive for HIV but don't get sick. At the San Francisco Department of Public Health, an ongoing study -- called the Clinic Study -- has monitored a group of HIV-positive people, primarily gay and bisexual men, who have lived for a decade and more without falling ill. The research has shown a side to HIV infection once thought impossible: that a positive result on an antibody test doesn't mean instant or certain doom, and that some HIV-positive people are living much longer than expected -- perhaps as long as anybody else. And as scientists search for the reasons behind long-term survival, the stakes are significant: the secret of how HIV operates, and what works to treat it, and what will work as a vaccine, and a cure.
There is no false hope, Rob Anderson says. Hope is not false. To say it is -- well, that's a contradiction to him.
On the day in 1985 when Anderson received the news that his stored blood from the 1979 hep B vaccine study had tested positive for HIV, he walked home through San Francisco and told his lover the news.
"I said, 'Do you think I'm going to die from AIDS?'
"He said, 'No.'
"I said, 'You're right,' " Anderson says.
For 17 years, Anderson has been a healthy positive. His HIV is something that's never very far from his mind, but it isn't the center of his world. "Maybe once a day, I say, 'Yes, I am HIV-positive,' but I don't live my life around being HIV-positive," he says.
But, he says, being HIV-positive has changed his life, if not his health. "How hasn't it changed my life?" he asks. "It's dispelled a lot of fear about living for me because it's the sense that I've been confronted with this form of potential death and it hasn't taken me. I certainly don't feel like I'm immortal or anything like that, but I feel like I've beaten the odds and had greater strength from it."
Anderson has never taken any antiretrovirals or other drugs intended to combat the effects of HIV. "I'm pretty opposed to it all, a little less now than I used to be. I've become a little more conscious of individuals needing to make their way through this thing. For some people, using the drugs gives them hope. But I think it probably would have killed me. I believe strongly that it would have killed me than helped me," he says.
Ask him if he follows any particular health regimen, and he says he does not. But his diet sounds pretty clean -- "I don't drink coffee, I don't smoke or drink alcohol, I limit my intake of things like sugar and fat and red meat. Not too much salt," he says. But he adds, "I'm not, like, a fanatic about it. I'm certainly willing to have a good piece of cheesecake once in a while."
And he meditates. He has practiced meditation since 1979, he says. The practice has given him a spiritual quality, a depth and stillness, like a lake in the morning, that's readily apparent. "I firmly believe that we all make our own choices in life," Anderson says. "That's not to say that somebody who is ill with AIDS is weaker or less ill, but I think their spirit has made that choice in their life experience -- I always think I'm a chicken because I won't go through that. I admire, I have tremendous admiration for my friends who have died from AIDS."
He says that being HIV-positive has not been without its benefits -- "in just discovering the joy in day-to-day living, seeing the wonder of life in everything around me. Even when I'm in a bad state of mind, just looking at that as an aspect of life. I guess it's just made me amazed."
And for those who are just finding out that they're HIV-positive, Anderson says, he has this advice: "In my position I would say don't give into the doomsayers, and listen to your own inner being. That's where I think you'll find the clearest guidance."
In 1982, Paul O'Malley, a researcher at the Department of Public Health, endured the death of one of his closest friends from the new, as-yet-unnamed disease that was making paths through San Francisco's gay community. Mourning his friend, O'Malley remembered something: that the man had taken part in the hepatitis B study the Health Department ran for two years, from 1978 to 1980, out of the old City Clinic. O'Malley had worked on the hep B study, which had recruited 6,705 gay and bisexual men to test the efficacy of a new hepatitis vaccine.
"It put a light on in my head," O'Malley remembers.
He started to cross-check the names of men who were ill with what would be called AIDS against the names of the hep B participants. Nearly half of the names on the two lists were the same. So, as Randy Shilts wrote in And the Band Played On, O'Malley thought there might be some kind of connection between the hep B cohort -- that is, the group of men who had taken part in the research -- and the emerging epidemic.
"I thought maybe we should look at this cohort for this disease," O'Malley says now. He thought the interviews compiled for the hep B study and the stored blood might come in handy to help scientists try to figure out what was going on. And O'Malley was right. In fact, the stored blood from the vaccine study would provide an invaluable window onto the very beginning of the epidemic in San Francisco, as well as the basis for the nation's longest-running study of people living with HIV.
In 1984, the Health Department received money from the Centers for Disease Control (CDC) to begin studying the hep B cohort. From 1984 to 1989, O'Malley and others tried to contact all of the men for permission to test their stored blood for HIV. "We made at least one valiant attempt" with each person, O'Malley says. As the permissions started rolling in, so did the results: Four to 5 percent of the 1978 blood tested positive for HIV; 12 percent of the 1979 blood tested positive; 25 percent of the 1980 blood tested positive. By 1984, when the Health Department began testing the men of the cohort anew, 67 percent were positive. And by December 1989, "75 percent of cohort members were infected with HIV, and 1479 were reported to have developed AIDS," according to a 1990 report on the study published in the British Medical Journal.
But in addition to providing a glimpse into HIV's early years in San Francisco, the stored blood in the Clinic Study added something equally valuable to researchers: a definite date of seroconversion, from HIV-negative to HIV-positive, for some 600 men. Pinpointing the seroconversion dates of the Clinic Study's participants has allowed researchers to accurately track the men's progression from HIV seropositivity to AIDS.
In 1985, it was believed that 90 percent of people who tested positive for HIV would be diagnosed with AIDS within a decade, O'Malley remembers. But by 1987, that belief had changed.
"Around 10 years ago this time, we realized there were people progressing at different rates," O'Malley says. "And there did seem to be this subgroup that didn't progress at all."
What the Clinic Study has shown is this: The median time between seroconversion and a diagnosis of AIDS is 10 years. That is, 51 percent of people in the study have been diagnosed with an AIDS-related illness after 10 years of infection. After 15 years of infection, 79 percent develop AIDS. And similar studies around the country have shown similar results. At the National Institute of Allergy and Infectious Diseases (NIAID), the branch of the National Institutes of Health where AIDS is researched, a study estimates that after 20 years of HIV infection, some 11 percent of people will remain asymptomatic.
But not, necessarily, undamaged. In this emerging area of science, the language is still changing and imprecise, but when it comes to HIV there are some newly invented general categories to keep in mind. There are rapid progressors, who move from HIV to AIDS within 5 years; progressors, who move along the arc of disease at the median rate of 10 years; long-term survivors, or slow progressors, who can remain AIDS-free for more than a decade but who suffer damage to their immunological systems; and long-term nonprogressors, also called healthy long-term positives, who appear to show no damage to their immune systems despite years of living with HIV.
"We make up these terms," says Lewis Schrager, chief of the epidemiologic branch of the basic science division at NIAID. "With the long-term survivors we're just saying that means anybody who goes 10 years or more without a clinical diagnosis of AIDS. It doesn't mean they're a long-term nonprogressor," Schrager says. "Even though 20 years out we're saying 12 percent may be AIDS-free, the billion-dollar question is, 'OK, fine, how many of those are still immunologically intact?' The answer is probably going to be very, very few."
But according to the Clinic Study's data, some 5 to 8 percent of people who test positive will, like Rob Anderson, remain immunologically intact for nearly two decades after infection. And "at this point, with HIV the closest we can get to someone who's cured is these long-term nonprogressors," O'Malley says. "They have the ability to keep their virus in check."
The question, of course, is this: For how long? Forever?
When she calls into radio talk shows, which she does on occasion, she calls herself Ellen. Usually what makes her reach for the phone is something someone says about AIDS -- about how people don't live too long with the virus, or about how Magic Johnson sure looks good despite his infection. When she calls, she doesn't use her real name, and it's not surprising: Almost no one in her life, including her two children, knows she has been HIV-positive since early 1984.
On this weekday morning, Ellen is wearing a sunflowered jumpsuit, the yellow flowers bright on a blue background. Her long, thick, wavy hair spills down her back and over her shoulders. She is a homemaker, she says, and she talks about her HIV status with the ease and practice of someone long grown accustomed to it -- every six months, Ellen has been coming to the Clinic Study to talk to interviewers about her life and to have blood drawn and tested. She wasn't part of the original cohort, obviously, since she is not a gay or bisexual man, but when she heard about the study she called up and asked to be allowed to participate. They opened the doors and let her in.
"I found out in 1991," Ellen says. She and her husband applied for life insurance; they had been married for seven years. Part of the application was an HIV test. He was negative; she was not. She thought back on her life. Her boyfriend, in 1984, had been an IV drug user -- she remembered her own flulike illness around that time, in mid-March, swollen lymph glands and a fever. Many phone calls later, she tracked him down abroad. She asked him to get tested; "I called him two weeks later. His test was positive," she says.
In 1991, when she first found out, "I woke up every morning thinking, 'Another day with HIV.' I would be jealous of people on the street. I was so jealous of other people. I never thought there would come a day when I didn't think, first thing, HIV."
It took about two years, she says. "It was like a roller coaster. First of all I was always terrified of death before. I was always afraid of death," she says. "When I found out, I thought I would die in a very short time. I knew I had had it for seven years. I'm not afraid of death anymore -- but yet I've also realized I'm not going to die."
Since her first illness, 12 years ago, the flulike bout, she has had no symptoms. And since then, "I've been doing the T-cells count," she says. T cells help the body fight infection, and because HIV attacks the body's immune system, the number of T cells in a cubic millimeter of blood is one indication of the severity of HIV infection; in 1993, the Centers for Disease Control changed the definition of AIDS to include anyone with T cells below 200. Ellen's haven't ever approached that number. "The lowest they've been is 540," she says. "Usually they fluctuate from 700 to 1,100."
She hasn't taken any of the antiretroviral drugs -- like AZT or the new protease inhibitors, which prohibit the replication of HIV-infected cells -- and she tries to take care of herself physically. And, as a homemaker, she says, she thinks she has less stress in her life than she would if she had a job. "I'm trying to relieve stress in my life -- just remembering some things aren't that important to get all stressed out about."
And she believes she will not die from HIV infection. "My genetic makeup for some reason is dealing with HIV, and there's no reason for me to think that won't last the rest of my life."
"That's the bottom line," she says. "I believe everything else you do that's positive only helps."
Inside our bodies exist worlds we know nothing about, groves of bones and blood, unrecognizable, perhaps, to an eye accustomed to the outside. It is tempting to believe that the mind directs it all -- to believe that the mind, with its senses and thoughts, can direct the course of any action, or any disease. But throughout the AIDS plague, there have been countless thousands who told themselves they would survive only to find that their best hopes and desires were for naught. In Western medicine, at least, the search for the reason behind why some people with HIV do not progress to AIDS and death, or move toward that end so much more slowly than others, has focused on empirical data, the kinds of things measurable in laboratories. And so far, there have been no easy answers. But there are answers, nonetheless. Or at least, there are the beginnings of answers.
In science, it is helpful to know what's not involved in something, as well as what is. Researchers looking into the whys of long-term survival with HIV have started to rule some things out of consideration -- things which have long been held, in the popular imagination at least, to have something to do with who got sick.
"We found no significant difference in number of sex partners, recreational drug use, or history of sexually transmitted diseases between healthy long-term positives and progressors from our cohort," the Clinic Study's researchers, including Susan Buchbinder, who heads the project, informed the 1992 32nd Interscience Conference on Antimicrobial Agents and Chemotherapy in Anaheim.
"We have been unable to identify any lifestyle factors, such as diet, vitamin intake, sleep habit, and exercise, that set them apart from other HIV-infected persons. Nor does the number of sexual partners appear to influence outcome," UCSF's Jay Levy wrote in a paper published in 1994.
What the data does show, at least so far, is that there are three main variables in whether someone with HIV will progress to AIDS, and how rapidly that might happen: the person's genetic makeup; his or her immune response to the virus; and the strength of the virus itself.
At the Clinic Study, researchers are concentrating on the genetics of long-term survival; that is, on whether people who live healthily with HIV are genetically different than those who don't. So far, the research has identified a number of alleles, which are chromosomes on specific genes, that long-term survivors seem to have in common.
At UCSF, Levy and others are working on sorting out the immune response of long-term survivors to HIV. That research has shown that some people exposed to the virus may have successfully fought off HIV and prevented infection, and that certain kinds of T cells, called CD8+ cells, remain persistently and strongly active in long-term survivors, controlling replication of the virus. "Treatment with the CD8+ antiviral factor, once identified, could be helpful," Levy concludes. "By these approaches, long-term survival could be achieved for all HIV-infected individuals."
And there has been great interest in a New England Journal of Medicine article, published last year, that studied five Australians who were all infected with HIV by the same blood transfusion donor. They are all long-term nonprogressors, and researchers found that the HIV virus they were infected with was missing part of the gene that influences replication, presumably rendering it less virulent than other HIV viruses.
In fact, the reason behind nonprogression -- that is, the reason people can live healthily with HIV -- probably doesn't rest in one single place for every person, scientists suggest.
"The problem is now to a large extent we're flying blind," says NIAID's Schrager. "We're looking for the natural experiment to shed some light where there's darkness."
That's a dark cloud with a silver lining. There's no formula -- not yet, at least -- that will give people with HIV the ability to survive forever; on the other hand, the research into all the different reasons why some people appear to be living untouched by the virus has led to new treatments.
For example, studies of long-term nonprogressors have shown a connection between the amount of HIV virus in someone's blood and his continued health. A low viral load, as it's called, has been linked in several studies to slower or non-progression; these days, the new protease inhibitors have been shown to lower viral load in people with HIV, although whether they do so long term, as well as what effect they might have, remains to be seen.
"Why are we bothering to do this?" Schrager asks. "It's very nice to provide hope to people, and say, 'Look, there are some people who progress less than other people.' Providing hope -- that's great to do. But what we really want is a scientific clue as to what's going on."
On one of the shiny wooden tables in Kirby Maples' living room, there is a snapshot taken at Easter in the late '70s; the colors of the photograph are Kodachrome bright, greens and blues of captured grass and sunshine and two men smiling at each other, hunting for eggs. On another table, across the room, there is a bottle of opium, the letters spelled out in red on a white label. In a way, the two objects are connected, across the room and across time: Love and pain, in this epidemic, have come to stand in for each other, overlapping and overflowing, always present no matter what else is there.
"I first became aware of HIV in the early 1980s," Maples is saying. "At that time, it was very distant, something that could never happen to me." But then Maples' lover Peter, the man in the photograph on the table, fell ill, and in 1989 died of AIDS. "When I say it could never have happened to me, I mean it couldn't happen to my lover either," Maples says. "We were extensions of one another."
In 1986, Maples says, he himself tested positive. But he wasn't sick, and he didn't think much about it. "Peter got progressively worse, so while he was ill my main focus was on taking care of him. I took care of myself, too, but I didn't have any problems," Maples says. He is sitting on his huge red couch as he talks; when he moved in here a year ago, he bought new furniture, and its bright colors are like tropical flowers in the room.
In 1990, the year after Peter died, the Clinic Study called Maples in. Maples had participated in the hep B study, and the researchers wanted permission to test his blood. When they did, the results were astonishing to him: He had been positive for going on 13 years. Learning that, Maples says, "was real strange. I didn't know what to do with the information."
But if Maples was still asymptomatic, the virus was slowly taking its toll. In 1990, he started taking AZT, the antiretroviral drug, and by 1992, his T cells fell below 200, which meant a diagnosis of AIDS. He left his job at the University of California and went on disability, very aware that he was fortunate to be provided for financially and in terms of medical insurance.
"I'm real, real fortunate in that respect," he says. "I'm very aware of it. I know I'm very much in the minority in that, but I'm very grateful."
Over the years, so many of Maples' friends have died of AIDS that he has stopped counting. "I sort of look at it like we're all in this together. I look at them as teachers. I have learned something from each one of them. And if they can die, I can do it too," he says. "I miss them terribly, but I just figure we're all in this together. It's just part of life at this stage of the game."
But at the same time, Maples says, he tries not to let AIDS get the upper hand. "I've always had great respect for the virus. However, I try not to have the virus or AIDS dominate my life. I try to live a quote-unquote normal life," he says. "Although that is getting a little more difficult. My health is not improving. But it's sort of a general attitude."
These days, approaching his 20th year with HIV, Maples has symptoms: Disseminated thrush, which is a yeast infection, has spread down his esophagus; he has chronic diarrhea from the bacteria cryptosporidium; and his body is reed-thin, evidence of AIDS wasting syndrome. In response, he has unleashed a battery of medicine, including Saquinavir, a protease inhibitor, which he says has dramatically decreased the amount of virus in his blood.
In addition, Maples takes weekly acupuncture sessions, and Chinese herbs. And he attends a support group -- as he has for the last nine years -- where he does meditation, guided imagery, and the laying on of hands. "Quite honestly I don't know if it's helpful or not," he says, "but it's comforting. It's very, very comforting."
In the nearly two decades that he's been HIV-positive, Maples says, he has seen improvements in medicine that give him hope. "I think in the last 10 years there have been great, great strides, and if I were going to have AIDS I'd much rather have it in 1996 than 1986. There's a much bigger arsenal out there."
And he has taken the time to travel, to buy things that he wants, to allow himself pleasure in his life. He is close to his family and to the lover who has been a "very, very important" part of his life for the last five years. "Awhile ago," Maples says, "I told myself this whole AIDS journey is one big adventure. You just have to be prepared for what's coming down the pike next."
Science, however, cannot -- or, in any case, does not -- quantify all of the reasons for long-term survival with HIV. There are other, less tangible factors as well, most of which have not been addressed by the empirical realm of Western medicine. But that doesn't mean people aren't talking about them -- and using them to change their lives for the better.
In 1993, at the Ninth International Conference on AIDS in Berlin, New York activist Aldyn McKean made a stir. For five years, McKean had been talking about long-term survival with HIV; finally, in Berlin, scientists and the media took note. In "Long-Term Survivors: A Report from the 'We Told You So' Conference," a layman's-eye view of the science and discussions aired at the conference, McKean spelled out some of the factors and categories of long-term living with HIV. In addition to the three factors generally acknowledged to be involved in long-term survival -- viral virulence, immune response, and genetic factors -- McKean's report listed six "other host characteristics," which included the gender and race of the HIV-infected individual, mode of infection, co-infections, access to health care and medication, behavioral factors, and psychosocial factors.
In particular, McKean's report singled out two not specifically medical factors longer-term survivors had in common: taking an active role in their own medical care, including establishing a relationship with a doctor they liked; and the ability to "realistically acknowledge life's challenges, grieving losses, not using denial as a coping strategy, reformulating their life view to maintain a positive outlook, remaining active with a set of goals to be accomplished, and maintaining social supports."
Certainly that's what Matthew Sharp believes. Sharp is the director of Healing Alternatives, the Market Street resource center that maintains one of the largest AIDS medical libraries in the country. Sharp has been positive since 1988, and he advises "to just keep an open mind. Don't be dogmatic about your treatment, and become an activist. All those things have kept me going."
At Healing Alternatives, people with HIV can browse the library, reading up on different treatments, choosing the one they believe is best for them. "It's sort of patient empowerment," Sharp says. "I think especially here in the Bay Area people are very individual about their decisions."
And that leads people in their own directions.
Sharp, for example, espouses protease inhibitors. "My T cells went from under 30 to 175," Sharp says. "It's very encouraging. It's sort of brought me back to being hopeful again."
But, he says, he has to look at the good numbers the same way he looks at the bad ones -- "I try to keep level about it. Obviously. It's a life-and-death thing."
Emilio Gonzales, on the other hand, has taken another route. Gonzales, who at 58 has been HIV-positive for 10 years, considered taking antiretrovirals years ago but decided against it. Instead, his health regimen includes acupuncture, Chinese herbs, and a kind of exercise called qigong, which is a healing form of tai chi. "It's regular exercise, it's easy to do, and it goes hand in hand with the other treatments I'm doing," says Gonzales, who leads a qigong class for people with HIV and has recently made a video about the exercises for the Immune Enhancement Project.
"There are people living even 20 years, very healthy lives, but number one you have to take charge of your own health care and make some difficult choices," Gonzales says. "You need support from your friends and to educate yourself and keep yourself current on what's coming down the pike."
And regardless of the findings of strict medical science, the connection between the body and the spirit is important for one simple reason: quality of life with HIV.
At the 10th International Conference on AIDS, activist, writer, and psychologist Andrew Velez hosted an evening session on long-term survivors named in honor of McKean, who had recently died. Velez, who has worked in the field of long-term survival for years, says that maintaining social connections -- a sense of community -- is very important for living with HIV, as are the thoughts a person has about having the virus.
"I think it has to be less about life and death and more about 'OK, I'm HIV-positive, what's next?' " Velez says. "You still have your choices. You have a choice to go on with your life in an affirmative way."
Basically, Velez says, what it comes down to is this: "The quality of life of someone who is HIV-positive -- who even becomes a long-term positive -- is inestimably improved by the approach that they control their lives. Even if they ultimately do not survive, the time they have is so much better than they would have had otherwise."
In 1991, furniture-maker and actor Mike Bender got some bad news from the Clinic Study in San Francisco. It wasn't so much that he was HIV-positive, or that he had had the virus for 10 years, ever since the heady days when he'd lived in a house on 18th Street in the Castro, with three floors of gay men and lesbians, a big extended family. The bad news was that he had a count of 100 T cells, an indication that his immune system had been eaten away by HIV disease.
"To tell you the honest truth, it was pretty horrifying," says Bender, looking out at the banana trees in his back yard. "At that time it was assumed that if you had that debilitated immune system that you had a few months left to live. I was perfectly healthy. I had just gotten back from a ski trip when I got the news. I had a really busy life, and the news and the statistics and my health were just total juxtapositions," he says. "The irony of it of course was I was healthy then, and I'm still healthy, and it's been a number of years."
Talking to Bender is a little like getting spiritual advice from a wisecracking old friend. Does it confound him that, 16 1/2 years into his HIV infection, his only symptom -- a low T-cell count -- means that he technically has AIDS? The CDC's AIDS definition includes everyone with T cells below 200, and Bender's count goes up and down around that margin.
"Officially, I guess, I have AIDS," he says. "Last month I didn't. Next month I may have." Living with that idea, he says, is something he's learned to do. "I sat in the chair and cried when I got the news of my T-cell count, and the fact that I was HIV-positive. After you cry, you're over it. I haven't cried about it since then."
Instead, he's made some changes in his life. "I stopped letting people upset me as much. I stopped deciding how much I think I should do at each point in my life, how much I think I should accomplish," he says. "It's like driving a car that eats tons of gas. When you're not having a gas crunch you don't think about it, but when gas is expensive, you get rid of some of the excess baggage. For me, it was the gas crunch. It just made me aware of where the energy was being wasted."
Last year, Bender decided to try to do what he really loves to do, which is acting. "In October I decided if I loved to do it I would do it. I certainly didn't look sick, or even look my age," he says. And if he seems like a medical conundrum, well, Bender has an explanation for that. "The statistics aren't real statistics," he says. "They represent the past, not the future, and in any case the statistics are based on who's been monitored. We have no idea of who's positive, or how long they've been positive. And when you're faced with death, that's initially horrifying -- but once you come to terms with it, you have nothing to lose. Every day is a gift."
Ashes to ashes, light to light. Like life, the Clinic Study is coming full circle. Having started as a hep B vaccine test before HIV was even known, the study is now working on putting together a new cohort of men for a new vaccine trial -- one that, when it starts, will likely signal the beginning of the end of the plague.
"We're trying to assess the willingness of sexually active men who have sex with men to see if they're willing to participate in HIV vaccine trials," O'Malley says. At this point, that's all off in the future, but the Clinic Study is getting prepared.
In the meantime, the research continues. So much is not known, even this: whether people living healthily with HIV will eventually be taken by AIDS -- three, four, or five decades out -- or whether they will truly be able to control the virus for the rest of their lives. We all die of something; nobody lives forever; enough time under the bridge and in a way it doesn't matter. On an indi-vidual level, that is. But in the way that we are, as Kirby Maples says, all in this together, it matters very much indeed, this idea of HIV as a virus that can be controlled.
"There's still a lot we need to learn from these people: like why? What is it? Is it the immune response? Is it the virus? Or both? Different things in different people?" NIAID's Schrager asks. "The real core of this, you know, goes to theoretical research on preventative vaccines."
In addition, the research needs to be expanded. Most of the people living healthily with HIV who have been studied in San Francisco and around the nation so far have been gay men, and it's not known how what's been learned from their lives relates to HIV-positive people of other skin colors and genders.
"The applicability of these results may be limited because the study population is primarily white, well-educated, and well-off economically. Women, injection drug users, and members of other ethnic groups will perhaps show different results," Johns Hopkins epidemiologist Alvaro Munoza wrote in a 1994 paper in the Journal of Acquired Immune Deficiency Syndrome and Human Retrovirology.
But if the hard scientific facts are still yet to be discovered, 15 years into this terrible time it isn't still necessary to consider things universally dark.
"Here I am, this little living example that flies in the face of everything," says Rob Anderson, sitting in front of the pellucid yellows and sands of his canvas, beneath his windows and the bright blue sky. "But then, I've always been kind of contrary."
"Maybe once a day, I say, 'Yes, I am HIV-positive,' but I don't live my life around being HIV-positive," says Rob Anderson.
According to the Clinic Study's data, some 5 to 8 percent of people who test positive will remain immunologically intact for nearly two decades after infection.
The reason behind nonprogression -- that is, the reason people can live healthily with HIV -- probably doesn't rest in one single place for every person, scientists suggest.
Regardless of the findings of strict medical science, the connection between the body and the spirit is important for one simple reason: quality of life with