- BIOETHICS FORUM ESSAY
The AIDS Epidemic @ 25: Between Memory and Activism
Not even useful medical treatments have put AIDS activists out of business. In the past few years, activists have taken the fight against AIDS global by protesting drug costs beyond the reach of most people, government failures to release money promised for treatment and research, and abstinence-only educational programs. For all the ethical fieldwork they do, if AIDS activists did not exist, health care ethics would have to invent them, and it has been that way from the beginning of the epidemic.
On June 5, 1981, the U.S. Centers for Disease Control published a report about five cases of a rare pneumonia in “active homosexuals” who had died from their disorder very quickly. Other cases soon surfaced, as well as a rare cancer showing up in homosexual men. Women with the same trouble came to official notice later that year. Even though it has been just twenty-five years since these first cases, the World Health Organization estimates that in December 2005 there were approximately 40.3 million cases of AIDS around the globe.
The first sentinel cases were unusual enough to make their way into the national press, and the news spread quickly from there, at least in gay communities. My first conversation about AIDS was short, but I remember it well. One sunny Sunday in 1981, two friends and I were on the way down the circular stairwell of the Boston building in which we all had apartments. A veterinarian in the group asked whether we had heard about “that gay cancer.” I had read a short article in a local newspaper, and our friend, a medical student, pronounced it all very scary. Because the cases were so odd, there seemed little more to say, there was nothing obvious to do with the information, and so we headed on to our favorite bar to idle away the late afternoon with drinks and dancing, even as the epidemic was rising to full bore. Retrospective studies would show cases in the United States – unrecognized for what they were – as far back as 1969, and even earlier in other parts of the world. The news media began to pay closer attention as these unusual diseases started showing up in non-gay people. For example, The Wall Street Journal‘s first article on the disorders appeared February 25, 1982, under the headline, “New, often-Fatal Illness in Homosexuals Turns Up in Women, Heterosexual Males.”
From the very start, the epidemic took victims as it went, but some victims were more equal than others. Social distaste for homosexual men and drug users expressed itself through the term “innocent victims” for people infected through unfaithful lovers, blood transfusions, and medical accidents. But even for innocents, the protective umbrella “victim” was only temporary shelter. In 1985, Life used its July cover to proclaim “Now No One is Safe from AIDS.” The bodily fluids of people with AIDS put others at risk, no matter the means of the original infection.
To counter damaging public images, people with AIDS and their families came forward to tell their stories and to assert the dignity of their lives. In her 1986 Screaming Room, for example, Barbara Peabody, an ordinary mom as the world reckons things, talks about helping her son navigate the health care system, ultimately to no avail. Paul Monette’s Borrowed Time combined equal doses of compassion and political rage as he recounts how sickness and death took his partner, Roger. Other people with AIDS told about hunting for treatments, about going anywhere merchants offered hope for sale, throwing themselves at the mercy of “midnight chemists,” swallowing the extract of Chinese cucumbers and injecting solutions of blue-green algae, as well as breaking research protocols by swapping pills to increase the odds of getting medication and not just placebos. Whatever else they were, AIDS “victims” were not fatalists; they took to the streets, demanding research and treatment, accusing the government of lethal indifference.
Media filters sometimes worked to keep them at a distance, but the activism of gay men and their allies – working toward a better and more responsive healthcare system – undercut like nothing else the one-time view of the American Psychiatric Association that homosexuality was a “sociopathic personality disturbance,” a fundamentally antisocial behavior rooted in pathological deficits of conscience. Yet not long into the epidemic, people began to complain that too much attention was being given to AIDS, that the very struggle against the disease was blind to its own sins: privileging AIDS and the AIDS of gay men above all else. In fact, the fight against AIDS was not just a fight on behalf of gay men, though it sometimes seemed that way as activists responded to anti-gay politics. For example, former North Carolina Senator Jesse Helms successfully shepherded legislation through Congress barring federal support of anti-AIDS education that promoted homosexuality. The United Kingdom followed suit with Clause 28, which prohibited government support for publications or teaching representing homosexuality as morally acceptable. These strictures airbrushed inconvenient homosexual men and women out of AIDS education altogether. AIDS activism could hardly go forward, then, without also being activism on behalf of gay and lesbian people.
In the name of moral order and protecting the public health, some individuals took noxious steps against gay people on their own. One of the very friends with whom I first talked about AIDS in 1981 – even before it had a name – went on to a distinguished academic career in cardiology. Before he died in 2000, he did his part for AIDS activism; he had no choice. A physician colleague wrote a letter to my friend’s patients and outed him as “a homosexual” and as having AIDS. Insofar as my friend’s non-invasive work never put anyone in jeopardy, he sued for defamation and prevailed in court. But it was a fight he never wanted. Mostly, he didn’t understand why anyone would do this. Really, why? In Reports from the Holocaust, the playwright and activist Larry Kramer had no doubt why: he saw the malignant hand of anti-gay genocide everywhere.
Mixing as it did sex and morality, AIDS was from the very beginning a political crisis. The epidemic threw American identity and national dogmas into question: we were not one indivisible community, sharing the same social status, rules, and opportunities. We were not all heterosexual adults, faithful in marriage, abstinent outside marriage, immune to the lure of drugs, with the same access to health care. The epidemic told a very different story, and some social authorities were on edge, fearful to accommodate AIDS on its own terms, for what that meant about who “we” were. Political fissures undermined a unified front against the epidemic from the very beginning. The political right generally supported an identify-and-control strategy and supported various forms of quarantine, mandatory testing, and identified case reports, alongside an ethic of sexual and narcotic restraint, among other things. The political left held out a different strategy that included education above all else, voluntary and confidential testing, anonymous case reporting, and cooperative strategies to keep sex and needle use safe. Bathhouses proved especially contentious in this debate, but the country ultimately split the difference: some cities closed bathhouses outright while others never closed theirs for a day. While many debates about AIDS are now settled as a matter of law and policy, the outcomes sometimes represent political stalemates rather than genuine agreements. New HIV infections prove both the right and left wrong in their strategies, as each side sees it, ensuring that the future of the epidemic will be no less political than its origins, especially with so many of the world’s people at risk.
It is a rhetorical reflex when writing about AIDS to cite the ever-escalating numbers of people with the disease around the globe and, usually, to note the number of children losing their parents this way. But the unforgiving scale of AIDS can be emotionally and politically numbing. Various waves of activism have come and gone against the backdrop of ever-rising numbers, but the sheer magnitude of the problem can blunt the will even of first-hand witnesses to AIDS. The people there first, the people who know what it means to lose someone to the disease, have done more than their share of AIDS work. What shape will activism take when the origins of the epidemic become increasingly disconnected from memories of its origin? It is the rare student now in medical, nursing, and dental school who remembers the time before AIDS. As far as the overwhelming majority of these students are concerned, AIDS has always been there and – barring a miraculous breakthrough – always will be, alongside every other disease competing for their professional attention.
This generational remove from the beginning of the epidemic is not necessarily a bad thing, and some rough edges of the healthcare system have been smoothed over because of it. At the beginning of the epidemic, for example, some health care professionals freely announced that they would not be going anywhere near a patient with AIDS because of the risk, because of their obligations to family, and because of the investment sunk into their careers. Since people with HIV are now an irreducible part of the patient population, this posture has faded into the background. Students in the health professions know that they will encounter people with HIV. The idea that AIDS is avoidable in health care has worn off, even as activists press other issues important to people with AIDS. Scratch an advocate of medical marijuana, for example, and there may well be an AIDS activist underneath.
In fact, some effects of AIDS activism are visible across health care today. Gay men and their allies modeled a way to take a fight against disease public. AIDS activists showed how to get public attention through street protests, powerful symbols, traffic tie-ups, phone zaps, and direct appeals to people in power. They also showed how important it is to avoid pejorative labels, to have the trust of communities under study, and to consult with these communities when doing research. Whether it was their goal or not, AIDS activists raised the bar for disease advocacy, showing the value of a tribe of committed men, women, and children who are willing to work- sometimes antagonistically – with institutional and public officials.
But what will AIDS activism look like as time passes, when it is no longer connected to the goal held out by early AIDS activists: restoring the world to a time without AIDS? Without witnesses to the onset of the epidemic, will activism wither? Will the world treat AIDS as inevitable? Not necessarily. Maybe someone wholly detached from the history of AIDS will take the essential steps necessary toward a universally available vaccine, maybe even someone simply looking for profit and not distributive justice. In biomedical innovation, sometimes the motives that matter are the motives that work. There will be AIDS activists so long as there are people who refuse to accept the global AIDS epidemic as an unfortunate fact about which nothing can be done.
In 2006, AIDS still seems to me what it was 25 years ago: disease, only more so. The epidemic has made inroads against every dimension of social, cultural, legal, and political life. In 1993, the National Research Council’s Panel on Monitoring the Social Impact of the AIDS Epidemic declared that U.S. social institutions could withstand AIDS. But that wasn’t the right question. As the German philosopher Hans Jonas had pointed out almost two decades earlier in Philosophical Essays (1974), society and its institutions are capable of withstanding enormous amounts of disease. Our obligations toward the ill come from beneficence, not fear of social collapse.
Yet powerful undercurrents of moral worry still work against effective AIDS prevention. For example, Illinois currently authorizes physicians to disclose the HIV infection of a patient to the spouse of that patient if the patient is unwilling to do so (410 Illinois Compiled Statutes 305/9). When it works, the disclosure might help protect a spouse from the risk of infection. Yet this law makes no provision for disclosure to unmarried partners. How is it that Illinois lawmakers do not care about unmarried sexual partners, who are at exactly the same risk of HIV infection as any spouse would be? What is the rationale for this law except to make a statement about the social value of spouses, as against all other people in relationships outside marriage? By ignoring the health and welfare of people outside marriage, Illinois legislators are applying to AIDS a moral standard of marriage and the family that is no longer true to the social facts. Bear with me for the repetition, but the deficit in this law shows precisely why there can be no fight against AIDS that is not also a fight to protect gay men, lesbians, and others who stand outside the circle of marriage by choice or social exclusion.
Following a heroic global effort, the World Health Organization announced the eradication of smallpox in 1980. People steeped in medicine and history knew full well what burden had been lifted from humanity. Well into the 1960s, there were tens of millions of cases, a noxious fraction of them ending in death. The WHO wrote a report that contains no oratory equal to its message, and it was otherwise an unremarkable public funeral for one of the greatest scourges of humanity. Yet another scourge was rising to take its place. The discovery of HIV reified this new epidemic, giving hope it could be tracked and brought under control. Maybe. In making that 1984 announcement, then Secretary of Health and Human Services Margaret Heckler said that a vaccine ready for testing could be expected within two years. At the time of her statement, there were fewer than 8,000 cases of AIDS in the United States. In the United States alone, that was about one million cases of AIDS ago. No vaccine is yet at hand, and the global epidemic has not yet crested. Yet we believe – if only dimly – that the end of the epidemic is at least imaginable.
AIDS will not end with my generation or the next, but I hope there comes a day when it does, when AIDS activists – however few remain – file a report, hold a ceremony, look wistfully back at the past, and remember in a gentle way those who died and those who did their part. Everyone else can go blithely about the business of their lives as if AIDS had never happened, spending sunny summer days according to their own lights. I, for one, will not blame them. That is – after all – the goal of AIDS activism and activism in its wake: to free children, women, and men from all illness and disease from which there is no lesson worth learning, whether anyone is left to remember the origins of the epidemic or not.