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The Second Epidemic

Powerful new AIDS drugs don't help anyone who's been fired from his job, kicked out of his apartment, or deserted by his family after testing positive for HIV.

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When it comes to fighting AIDS, hope is a rare and precious commodity. A tiny bit appears now and then like a drop of rain in the desert, and those who are dying of thirst can't help but imagine they're caught in a flood.

It's understandable that recent articles about a new class of HIV-fighting drugs--protease inhibitors--have been overflowing with hope. According to reports, these new drugs, when taken in combination with older drugs, have produced some stunning results in several clinical trials around the country. A new "triple cocktail" of antiretroviral drugs has drastically reduced the amount of HIV in some people's bloodstreams. In one study, a regimen of the new protease inhibitor indinavir and two older drugs, AZT and 3TC, lowered virus levels to "undetectable" in five out of six patients. Reportedly some patients even ended up testing HIV negative.

This is hope indeed, though for a small percentage of people worldwide with HIV--namely the wealthy, the well insured, and the well connected. The new triple-drug regimen comes with an annual price tag of about $15,000. Add to the new cocktail's tab the cost of standard prophylaxis treatments for pneumocystis carinii pneumonia and thrush, as well as a prescription to keep chronic diarrhea at bay, and you're looking at a pharmaceutical bill of $1,500 to $2,000 a month. Hope for the HIV infected can only trickle up as AIDS in the U.S. moves increasingly into poor communities where access to health care has long been a serious problem and as social welfare programs feel the bite of federal reprioritization.

The cost of protease inhibitors has already led to collateral damage among the poorest citizens with HIV. In January the Illinois Department of Public Health added one protease inhibitor, Invirase, to the 126 drugs it provided free of charge to financially eligible people through its AIDS Drug Reimbursement Program. Six months later, due to the high cost and demand for Invirase (along with the newly added 3TC), the department decided to eliminate nearly 80 percent of the drugs it offered and to toughen the eligibility requirement in order to keep the program solvent. As of last month, the department no longer provides any drugs to fight some of the most serious infections for people with AIDS, including toxoplasmosis, cryptosporidiosis, mycobacterial infections, and wasting syndrome. All 47 antibiotics have been eliminated as well. The department also took about a million dollars out of its HIV prevention and education programs--nearly half the budgeted funds for the current fiscal year, according to David Munar at the AIDS Foundation of Chicago--and put the money into the AIDS Drug Reimbursement Program. Nonetheless, the department expects the program to be bankrupt by the end of the year.

Still, you'd have to have a heart of granite not to feel a bit of hope after reading the protease inhibitor news. I know several people who feel healthy for the first time in years thanks to the new drug combinations. Suddenly they find themselves imagining once unimaginable futures. Yet the way in which the news has been delivered--and the way that it continues to relegate nonscientific strategies to near irrelevance--is truly a cause for despair. A recent front-page story in the Wall Street Journal heralded protease inhibitors as "glimmers of a cure" in its first sentence. "Scientists may finally have cornered the long-elusive virus, attacking it with unparalleled force from so many sides that it doesn't readily escape and spread as it has before." Researchers are portrayed as valiant, conquering war heroes; they, rather than people with HIV, have suffered through "a decade of disappointment and frustration."

In stories like the Journal piece, which seem to pop up every few years, a purely medical epidemic rages. The reader is treated to repeated images of "a courageous physician, a thankful patient and a miracle cure," in the words of cultural critic John Nguyet Erni. Scientists work diligently in their pristine, apolitical towers doing their unbiased best to solve the "real" problem, while activists, social workers, and community leaders (if mentioned at all) muddle about confronting peripheral issues--job discrimination, housing shortages, physicians who refuse to treat people with HIV, insurance companies that collect premiums but don't pay claims. It is, in Erni's words, "a lesson about the rise of modern medicine as a force for salvation." A few centuries' worth of evidence to the contrary, we still believe that science will save us.

AIDS is not purely a medical phenomenon. Systematic discrimination against the infected has been called the "second epidemic," but it's central to the reality of living with AIDS. Science may have "cornered" the virus, but it hasn't rescued anyone who's been fired from his job, kicked out of his apartment, or deserted by his family after testing HIV positive.

Yet the victories of science are repeatedly imagined as the only victories when it comes to fighting AIDS, though they tend to come with nasty side effects, high price tags, and unchanged mortality rates. Nearly every other effort to deal with the epidemic is treated as a stop-gap measure, assigned to the occasional human interest column, not-for-profit newsletter, or lefty trade paperback detailing the "social" impact of AIDS. But in keeping with 200 years' worth of public health trends when it comes to fighting infectious disease, community-based efforts have had the most profound impact on the quality of life for those dealing with HIV--and they've been the only interventions that have prevented infections from occurring in the first place.

In the early 1980s, before the scientific establishment saw just how much money nascent heroism could net, gay community leaders designed the first safe-sex campaigns, and these initial efforts resulted in a dramatic drop in new HIV infection rates among gay men, a phenomenon as yet unduplicated in any other at-risk population. As Dr. Mervyn Silverman, then head of the San Francisco Health Department, told the San Francisco Chronicle in July 1984, "What we are seeing is the most dramatic change in behavior of any group in society that I have seen in my career in public health." In 1987 less than one percent of gay men who were tested for HIV in New York and San Francisco--the two cities with the highest number of AIDS cases in the country--turned out to be positive. Safe sex campaigns saved thousands of lives, while so far science hasn't been able to save a single one.

Early safe sex efforts worked in large part because they were decidedly nonclinical, as much about community empowerment and political resistance as they were about public health. Facing an indifferent government and an often paranoid press, which helped to label gay sex as the primary source of the disease, community leaders dared to keep gay sex sexy, encouraging men to express their sexuality in safer but no less exciting ways.

Despite their acknowledged success, these safe sex campaigns were often blamed by conservatives for the spread of the disease. Later public health efforts came to rely on antisex scare tactics ("The best way to avoid infection is not to have sex," says one poster from the Illinois Department of Public Health). But once sex-positive images and language disappeared by federal mandate, infection rates started to rise again.

Right from the start gay community leaders acknowledged that rendering all gay men in America celibate would not be a success, even if it reduced HIV transmission to zero, because they desired an outcome more important than any quantitative medical result--namely the general well-being of gay people. Perhaps the gay community was best able to turn safe sex messages into action; our years of much-maligned "promiscuity" taught us how many diverse forms pleasure can take, and how easy it can be to move between them. As critic Simon Watney would write in 1989, "Sooner or later we must wake up to the uncomfortable fact that it is only the example of gay men which will ultimately save everyone else's lives."

While community efforts aim to produce the maximum benefit for an entire population, research protocols are designed to produce the maximum benefit in each experiment. Researchers can define success on their own asocial terms, typically within the narrow parameters of science. Reducing viral load to zero in a clinical trial is a "success," no matter how severely the patient suffers under a toxic pharmaceutical regimen, no matter how badly a participant's job is jeopardized from taking time off of work to attend the trial, no matter how many people in the trial are given corn starch pills instead of medicine, no matter what services go unfunded to pay for the trial in the first place. By defining success so narrowly, science can claim victory and garner headlines before community leaders can make a dent in the biases that perpetuate the epidemic. Scientific knowledge privileges the microscopically small (the retrovirus) and the collectively huge (the epidemiological model). So when it comes to understanding everyday human behavior, researchers sometimes find themselves at a distinct disadvantage. Yet their limited focus makes the scientists our only recognized "experts."

Nowhere was this myth propped up more emphatically than at last month's 11th annual International AIDS Conference, the much-fanfared gathering of researchers and clinicians on brief furlough from the worldwide "war on AIDS" to discuss their statistically significant findings. Policy analysts, social workers, legal advocates, health educators, and other "nonexperts" also attend the conference. Two of the conference's four tracks are devoted to social and policy issues, but you'd never know it from the way the conference's findings are typically reported in the mass media. Hardly anyone seems to care about the solutions that don't involve medicine--which prevention efforts work best with particular populations, or how human rights violations leave women particularly prone to infection in the developing world, or how antidiscrimination and confidentiality legislation might influence people's willingness to cooperate with public health officials. Science alone has the answers. "Beautiful data" is mistaken as truth from God, while the truly effective community-based work gets ignored. The lives of people with HIV are lost in the shuffle, despite the token speeches they are allowed to make at the opening ceremonies.

At this year's AIDS conference, one high-profile program offered real hope that science might have to share its pedestal, at least for a few hours. The University of Alabama at Birmingham sponsored a "live, interactive video teleconference" featuring several prominent community advocates: Phill Wilson, founder of the National Black Gay and Lesbian Forum; Moises Agosto, director of research and treatment advocacy for the National Minority AIDS Council; Dawn Averitt-Doherty, executive director of the Women's Information Service and Exchange; and Martin Delaney, founder of San Francisco's Project Inform. The program, billed as a summary of the conference's important highlights, was beamed to numerous cities across the U.S. direct from Vancouver, the site of this year's conference. Only one physician sat on the first panel, Michael Saag, associate professor of medicine at the University of Alabama at Birmingham and director of its AIDS outpatient clinic. It seemed reasonable to expect that the viewing audience might learn practical ways to combat the disease at the community level.

But once the teleconference started, it became clear within ten minutes that the program would be another demoralizing exercise in the worship of medicine. Outnumbered four to one, the lone scientist still held sway, offering the first, authoritative word on nearly everything, admonishing anyone who wasn't a researcher focusing on HIV to "get out of the way." Meanwhile, the community leaders--representing a wide range of agencies fighting the disease, often years before many in the medical establishment even got involved--were demoted to cheerleaders or, worse, broken records.

For two hours, Delaney fed questions to Saag. Poised in a navy blue power suit with Rolex and wedding band prominently displayed, Saag proceeded with the kind of camera-coached assuredness that's appropriate for a fount of truth. Whether addressing the importance of the relatively new viral load test, the mutability of HIV, or, most emphatically, the promise of triple-drug therapy, he let the viewers know that he delivered "facts." The community leaders spoke not to the viewers but to the doctor seated a few inches higher at the center of a curving dais. They occasionally interjected their "opinions" about his facts--pointing to the gross inequities of the American health care system, for instance, or the impossibility of delivering $15,000-a-year drugs to a large percentage of people who need them.

Wilson tried especially hard to remind Saag that people with AIDS face nonmedical problems that are not only important but directly impact the efficacy of therapeutic interventions. According to Wilson, before the indigent can enter into Saag's decidedly middle-class vision of health care--patients educating themselves about the bewildering array of drugs, visiting their trusted personal physicians at least once every three months, and unfailingly popping upwards of 15 pills a day for the foreseeable future--"there is social work that needs to be done. We need to help people stabilize their lives." Wilson understood that people with HIV are something more than bits of beautiful data. "There are issues of self-esteem," he reminded Saag. "You can't convince people to take strict drug regimens if they don't feel their lives are worth anything." Delaney's response: "OK." On to the next question.

Of course, any health educator will tell you that self-esteem is no throwaway issue; it's critical to the success of any public health campaign, especially when it comes to prevention efforts. Individuals at high risk for HIV infection are often accustomed to being viewed as deviant or somehow expendable to society. They're unlikely to adopt safer behaviors if, in Wilson's words, they feel their lives are not worth protecting. Outreach to such populations is no stop-gap measure; preventing infection is the only sure way to stop AIDS in its tracks. Science's proposed solution--feeding millions of already-infected people billions of dollars worth of toxic drugs--is the real stop-gap measure.

At this year's International AIDS Conference, four plenary sessions focused on prevention efforts, as did at least eight skills-building workshops, ten poster presentations, and 25 breakout sessions. Yet, for the entire two-hour community update, the need to keep people from becoming infected was never mentioned. This tack may have come as a relief to pharmaceutical giant Glaxo Wellcome, which underwrote the teleconference, since it can't patent behavior modification or sell protease inhibitors to uninfected people.

In his concluding remarks, Delaney thanked "physicians and researchers" for their great contributions to the fight against AIDS. He all but apologized for his early years as an activist, saying he was "not always right" in the things he yelled about (even though pressure from activist groups like ACT UP has in large part kept science accountable to those it hopes to serve). Then he reduced his fellow nonscientific panelists to poster children for multidrug therapy, explaining that a year ago he wouldn't have expected to see Wilson, Agosto, and Averitt-Doherty--all of whom have AIDS--alive at this conference. Thanks to the advances of Western medicine, Delaney marveled, they're doing great. Apparently he felt no need to entertain the possibility that their well-being might at least partially be the result of something else, like their ongoing commitment to fighting for a more equitable, open society. The only success worth mentioning was the one generously handed down from the hallowed halls of science.

The second part of the teleconference was dedicated to a "professional update" for "health care professionals and HIV counselors." The difference between the community update and the professional update, aside from the disappearance of all the community organizers in favor of six physician-researchers, was simple: the professionals hardly had to imagine a world beyond the doors of their research labs, where all the solutions to the AIDS crisis are currently incubating. For example, Carol Brosgart, a doctor who directs the East Bay AIDS Center in Berkeley, agreed with everyone else on the panel that viral load is the single most reliable predictor of disease progression (discounting poverty, of course) and then mentioned in passing that many of her patients couldn't get viral load tests done because their insurance companies weren't willing to pay for them. Apparently among professionals, access to critical care is not a dire problem.

The doctors couldn't stop talking about triple-drug cocktails. They seemed to believe that throwing together the right combinations of pills (Wilson pointed out that there are now 289 possible combinations) and stuffing them into the gullets of enough compliant patients will bring the epidemic to its knees. Medicine will save us.

Like any other group, scientists recast the world according to their own interests. Every one of the professional panelists has received honoraria and research grants from numerous pharmaceutical companies, including Glaxo Wellcome, Bristol-Myers Squib, Abbott, and Upjohn. Most have worked as consultants to these companies as well. And now, coincidentally, they all advocate multidrug combinations. If you were taking six different herbs, doing acupuncture once a week, and meditating daily--all modalities with known immunological effects--your researcher would still chalk up your outcome purely to the effects of artificial chemicals. "Real" medicine is the kind most profitably commercialized.

One panelist thought it "encouraging" to start prescribing protease inhibitors to patients with more than 500 T-cells, who until recently might not have been given any drugs at all (before protease inhibitors, doctors typically did not prescribe antiretrovirals until someone's T-cell count fell below 500, sometimes not until it fell below 200). Another emphasized, without any evidence to back him up, that perhaps everyone who is HIV positive should start taking the triple-drug combination, even those with well-functioning immune systems. They were deemed healthy until protease inhibitors came out of the pipeline.

This is not to say that these scientists are out to line their pockets, or that their science is irreparably contaminated by their financial ties to the pharmaceutical industry. Their science may be impeccable, their hearts pure as virgin forests. But economic realities have greatly limited their vision of a cure.

Consider that research on an AIDS vaccine has dwindled in recent years. Currently only two U.S. drug companies are working to develop clinical vaccine trials, and less than 10 percent of research dollars from the National Institutes of Health is spent on work to develop a vaccine. The slight attention paid to developing a vaccine may be the result of its tiny potential market value compared to the $100 million annual price tag attached to the new HIV therapies. As the most recent issue of AIDS Policy & Law points out, "With the number of new HIV infections stabilizing in the United States at around 50,000 per year [roughly the same as the annual number of AIDS deaths], the demand for vaccines here is considerably less than in developing countries, where infection rates are skyrocketing. However, those countries cannot afford the cost of vaccines."

Certainly science has helped to improve the health of some people living with HIV. Aerosolized pentamidine alone has been critical in reducing the risk of PCP, the number-one killer of people with AIDS (although the drug is not without its unpleasant side effects; my ex-lover used to skip his semiweekly treatments now and again because they made his lungs hurt and made everything taste like pentamidine). Delaney is right to acknowledge such scientific gains, but thanking researchers for doing their jobs sounds a bit like thanking straight people for tolerating gays.

The cruel irony of science worship in the age of AIDS was predicted some 20 years ago in a series of studies by Thomas McKeown in Great Britain and John and Sonja McKinlay in the United States. They showed that modern technological advancements in medicine have never had a significant effect on disease-specific mortality rates. The studies were released at a time when science was proclaiming that it had all but eradicated the threat of infectious disease in the developed world. Looking at 11 major infectious diseases that underwent substantial declines in the United States from 1900 to 1973, and for which identifiable medical interventions had become widely available, the McKinlays discovered that "in general, medical measures (both chemotherapeutic and prophylactic) appear to have contributed little to the overall decline in mortality in the United States...having in many instances been introduced after a marked decline had already set in and having no detectable influence in most cases." For those diseases in which a decline in mortality appeared "substantial" after the appearance of a new medical intervention--namely influenza, pneumonia, diphtheria, whooping cough, and poliomyelitis--the authors estimated "that at most 3.5 percent of the total decline in mortality since 1900 could be ascribed to medical measures introduced." That small percentage certainly represents a sizable number of people, but considering that over 96 percent of the decline in mortality occurred without medical intervention, the news of science's success has been greatly exaggerated. As R. Dubos wrote in Mirage of Health, "When the tide is receding from the beach it is easy to have the illusion that one can empty the ocean by removing water with a pail."

McKeown found a similar pattern in the declining mortality rates of 19th-century England. Discovering that "the decline in mortality...was due wholly to a reduction of deaths from infectious diseases," he concluded, "Therapy made no contributions, and the effect of immunization was restricted to smallpox which accounted for only about one-twentieth of the reduction of the death rate."

Within the last two centuries, community efforts have made the most significant advances toward eliminating infectious diseases. Changes in behavior--especially those improving hygiene and nutrition--have been the most effective strategies for saving lives. Gay communities across the country knew this truth from first-hand experience and didn't need physicians to clue them in.

Yet we still long for science to offer the magic bullet, or perhaps some magic buckshot in the form of a quintuple-drug cocktail. Preoccupied with the peculiarly American notion of the quick fix, dazzled by the kind of technological displays and scientific rhetoric glorified at the International AIDS Conference, we forget that magic bullets only work if everyone is guaranteed access to one. So far this hasn't been the case. In fact, it was recently discovered that many AIDS physicians routinely withhold bronchoscopies--key diagnostic tests for PCP--when Medicaid reimbursements fall below the market cost of the procedure. A 1995 study conducted by the Department of Veterans Affairs and Northwestern and Duke University medical schools found that hospitalized AIDS patients with PCP are 40 percent less likely to have their physicians order a bronchoscopy--and 73 percent more likely to die in the hospital--if they are insured under Medicaid than if they carry private coverage. Perhaps, the study's authors suggested, that's because reimbursements from Medicaid can be as little as one-tenth the amount received from a private insurer.

If scientists could rid the world of HIV tomorrow, they couldn't do a thing to eliminate the legacy of misunderstanding, fear, and intolerance that has been every bit as vicious and destructive as the virus itself. Some key studies even helped to foster these biases in the early years of the epidemic. In the early 1980s, researchers sometimes ignored AIDS cases among nonhomosexuals, even when they showed up in their own studies, arguing instead that something in the fast-lane "gay lifestyle" was causing the disease. Of course, just one case of AIDS in a nongay person disproves the theory, yet when faced with such cases medical authorities discarded their own revered scientific logic, apparently convinced that being gay had to be lethal. For example, in 1983 the Centers for Disease Control published the results of its first multistate case control study--focusing entirely on gay men--in which the authors concluded emphatically that "although the cause of acquired immunodeficiency syndrome in homosexual men remains unknown, the study presented here has identified a distinctive lifestyle as an important risk factor." Yet a year earlier the CDC reported that 22 percent of patients with AIDS were heterosexual, the majority of them IV drug users. Nearly a third of the heterosexual patients were women. Hemophiliacs had also been reported with AIDS. Why would researchers imagine that "the cause of AIDS in homosexual men" was any different than the cause in any other type of person? Why did no researcher see fit to wonder whether "the cause of AIDS in hemophiliacs" had anything to do with their "distinctive lifestyles"? The scientific establishment--to which we now turn for salvation--bolstered the often inhumane backlash that continues to plague the HIV infected. Perhaps in preparation for next year's International AIDS Conference, medical researchers will channel some of their energies into developing a vaccine against hubris, tunnel vision, and willful ignorance. That will be a day of unprecedented hope.

Art accompanying story in printed newspaper (not available in this archive): Illustration of masked doctor and egg timer/cocktail shaker, by Will Northerner.

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