Two Decades of AIDS:
Scenes from an Epidemic

People Dying from a Disease They Didn't Have: The CDC Revises the Case Definition of AIDS, January 1, 1993

Considering how much is now known about the nature and workings of HIV, it can be easy to forget that the earliest definition of AIDS came into being much the same way as the proverbial three blind men described an elephant. One felt the tusk, one felt the tail, and one felt the trunk -- but they had little idea of the essential character of the elephant as a whole.

In 1981, for instance, doctors could see that AIDS seemed to be related to pneumocystis carinii pneumonia and to Kaposi's sarcoma, but had little understanding of how or why. In 1982, the Centers for Disease Control and Prevention (CDC) made the first attempt to systematize a case definition of AIDS by simply creating a checklist of the most commonly occurring symptoms and conditions. The definition was expanded in 1985 to include a total of 20 conditions, mostly opportunistic infections and cancers, and then again in 1987 when it was recognized that HIV could directly infect the nervous and digestive systems.

However, problems began when the CDC definition -- which was intended to be used as descriptive -- was adopted by the U.S. government as the basis for the provision of public benefits. What began as a tool of epidemiology was turned into a weapon of bureaucracy, and a blunt weapon at that. For instance, the case definition could not assess how much damage HIV had been done to individuals' immune systems, just whether or not they had been diagnosed with something from a checklist of 23 AIDS-defining illnesses.

Even more seriously, early evidence was based was derived largely from gay men -- even as other populations had begun to be seriously, and differently, affected. For instance, it turned out that an early signature condition of AIDS, Kaposi's sarcoma, was limited mostly to gay men. Meanwhile, injecting drug users with HIV were revealing high levels of pulmonary tuberculosis and recurrent bacterial pneumonia, while HIV-positive women were predisposed to develop invasive cervical cancer. Yet none of these three conditions were recognized as AIDS-defining, cutting off many people from treatment options and from essential public benefits. The limits of the case definition also led to a systematic undercounting of women, people of color, and other populations among AIDS case statistics, thus shifting research and prevention funds away from them.

By 1990, advocates for people with AIDS had grown tired, as they put it, of seeing "people dying from a disease they didn't have" in terms of the official case definition. Activists led by attorney Theresa McGovern, founder of the HIV Law Project in New York City, brought a class action lawsuit which forced the CDC to expand the AIDS case definition include the three additional conditions. But at that time the CDC went a step further, finally recognizing that HIV disease represents a spectrum of impaired immune functioning, and that the sudden emergence of an opportunistic infection represents only the later stages of that spectrum. And so, in a new case definition which took effect on January 1, 1993, the CDC indicated that an AIDS diagnosis could be made not only upon diagnosis of an AIDS-defining illness, but also when CD4 cell count dropped below 200 (or when CD4 cells represented less than 14 percent of all lymphocytes).

This revised case definition has made an enormous difference in recognizing the many ways in which HIV affects the human body, and provide a far wider range of people with eligibility for care and benefits. Fortunately, this change took place before the advent of combination antiretroviral therapies, so that a precedent had by that time already been established for widespread access to medications. The understanding of HIV/AIDS as a continuum has also helped to provide protections under federal disability law (although recent court decisions have eroded some of these protections).

Inevitably, the arrival of new technologies has now begun to make the 1993 case definition obsolete. For instance, no mention is made of viral load testing, even though this has become as standard a procedure as CD4 cell count testing. Even moreso, some question the meaningfulness of the very concept of AIDS itself, which was envisioned as a permanent condition leading more or less quickly to death. But if someone's viral load is undetectable, if their CD4 cells have rebounded to 500, and if they've gone off even prophylactic medication, they may remain HIV-positive -- but do they still have AIDS? The 1993 case definition revision was a huge victory for accuracy, equity, and inclusion in health care, but even its time may now have passed.

Living La Vie Bohéme: Rent Opens on Broadway, April 29, 1996

It was the perfect prelude to the "Summer of Love" when, on April 29, 1968, the musical Hair opened on Broadway. Telling the story of a tribe of hippies in New York's East Village, Hair shocked audiences by engaging head-on all the great issues of the day: the sexual revolution, the generation divide, the drug culture, and -- looming above everything else -- the ongoing decimation caused by the Vietnam War.

Twenty-eight years later to the day, on August 29, 1996, another musical opened on Broadway whose artistic lineage led directly back to Hair, and which would on its own terms have as great a cultural impact. While relating the story, once again, of a loose-knit group of homeless outcasts in the East Village, Rent was also a retelling of the Puccini opera La Bohéme -- which itself had premiered exactly 100 years before. But while Vietnam loomed over the draft-age hippies of Hair, and tuberculosis threatened the Parisian artists of La Bohéme, the characters of Rent lived in the shadow of AIDS.

Rent is set over the course of a year in the late 1980s/early 1990s, when squatter riots tore apart the East Village, the national economy had taken a nosedive into recession, and the radical protest group ACT UP was at its peak amidst a mounting AIDS death toll. The story revolves around three multiracial couples, one straight, one lesbian, and one gay, with narration by a friend who is an aspiring documentary filmmaker. Although marginalized by many measures -- the characters are variously gay, lesbian, transgender, drug users, homeless, jobless, and, especially, HIV-positive -- they form a tight-knit family in the face of adversity.

More than one critic has detected some mawkish sentiment in Rent, and, certainly, songs such as "Seasons of Love" ("525,600 Minutes") have become as kitschy as red ribbons in some AIDS circles. Yet on the whole, Rent presents a powerfully empathetic portrait of life with HIV, capturing its time in a way that only a few musicals -- such as Hair -- have managed to do.

Yet, the picture in Rent is often darker than in its predecessors. Where Hair showed the tribe taking LSD together at a "be-in," Rent features a communal "AZT" break, triggered by the pager beeps. Where the performers of 1968 tried to elude draft boards, the PWAs cannot escape the virus in their bodies. Where Claude, a sympathetic central character in Hair is felled in Vietnam, Angel dies of AIDS onstage in the second act. Still, throughout Rent, there is also the other side of AIDS: the support of friends and communities, the solidarity and Self-empowerment of PWAs, the unwillingness to surrender to despair.

In one tragic, real-life development, the musical's creator, Jonathan Larson, died of an aneurysm the night before its final dress rehearsal. Larson's death at age 35, on the brink of phenomenal success, has added another layer of depth to the show. As Tim Weil, the musical director who helped bring Rent to Broadway, told Playbill: "I think Rent is about living with AIDS and maintaining a certain quality of life, as much as it's about people dying from this horrible plague. Since Jonathan's passing, it's even more clear to me that the show deals with the hope and joy of living each day to its fullest."

Inevitably, Rent is no longer completely cutting-edge in its content. Its setting, the East Village, has gentrified in recent years; the run-down environs of Rent are now ringed with upscale bistros and trendy shops, with the squatter riots a distant memory. Amidst an improved economy, the gloom of the early 1990s recession has largely lifted, and homelessness and unemployment have receded. Most of all, the new medications that have revolutionized HIV treatment are nowhere to be found in Rent; indeed, they were still little-known and totally unproven when the show opened.

Yet in its own way, Rent does anticipate today's AIDS epidemic as well. In the final scene of La Bohéme, the heroine Mimi dies of tuberculosis, but at the end of Rent, a desperately ill Mimi seems to die -- but then suddenly, unexpectedly, she revives. Jonathan Larson may have died never hearing words like "protease inhibitors" or "antiretroviral therapy" but he went ahead anyway and spared the life of Mimi. Thus, at the show's close, Mimi is by no means cured, and her future remains plagued with doubt, but in the present Mimi remains alive. And so, for Mimi, as for so many PWAs today, the ending of the old script of AIDS has been rewritten, even if no one can say with certainty what the next act will bring.

HIV Denial at the Epicenter of the Epidemic: The Durban International AIDS Conference, July 2000

Without diminishing its importance, the International AIDS Conference might reasonably be called the "Olympics of AIDS." This biannual conference is, after all, the one event at which the best and brightest among the world's HIV/AIDS researchers, activists, and practitioners gather together, each time in a different, carefully selected city.
And, like the Olympics, the event never fails to be steeped in politics or to generate media coverage, perhaps never more so than in July 2000 when the conference met for the first time in sub-Saharan Africa. Yet what was intended as an opportunity to turn a spotlight the very epicenter of the epidemic very nearly ended up setting back the global battle against AIDS.

For the first several years, the U.S. was the main site for the international AIDS conference. The inaugural conference, in 1985 took place in Atlanta, Georgia, the home city of the U.S. Centers for Disease Control and Prevention (CDC). At that time, AIDS was just emerging into the consciousness of the general population, HIV itself had been discovered scarcely two years before, and the test for HIV antibodies had only recently been developed.

By the time of the Washington DC international conference in 1987, however, the U.S. was in the midst of full-blown AIDS hysteria. The Secretary of Health and Human Services had prophesied that spring that AIDS would be worse than the Black Plague. Even President Ronald Reagan, who had remained silent on AIDS to that point, used the occasion of the 1987 conference to give his first policy address on the epidemic -- mostly outlining "get-tough" policy prescriptions.

That harsh approach would come back to haunt the U.S. during the 1990 San Francisco conference, when U.S. immigration officials refused to admit Hans Paul Verhoef, a Dutch man with AIDS. A huge controversy ensued, marked by protests against inflexible U.S. policies prohibiting entry to anyone with HIV. Although the Bush administration eventually announced a ten-day waiver of the policy for people attending conferences, the boycott mounted in 1990 has lasted to this day; international AIDS conferences are no longer held in the U.S.

After 1990, the location of international conferences shifted largely to other parts of the industrialized world, such as Yokohama, Japan in 1993 and Berlin, Germany in 1994. But by that point, the much hoped-for early breakthrough of an effective vaccine or treatment for AIDS had not materialized. With progress so slow, pessimism had grown to the point that it was decided to switch to a biannual meeting schedule.
Thus it came as quite a surprise when the 1996 conference in Vancouver turned out to be the most important ever. In the early 1990s, there had been some small advances in the treatment of HIV though the use of nucleoside analog reverse transcriptase inhibitors ("nukes"), drugs which block one of the enzymes needed by HIV to replicate. But by 1996, dramatic advances had been made in the development of drugs to inhibit another essential enzyme, protease.

The news of the very real power of protease inhibitors took the world by storm. Inevitably, however, when presented through the lens of the media, protease inhibitors came to be presented as virtually a "cure" for AIDS. Those who carefully read the fine print of media coverage would recognize the limitations of protease inhibitors, but it took the 1998 international conference in Geneva, Switzerland to finally quell the unrealistic euphoria over combination antiretroviral therapies by spelling out their many shortcomings.

Right on cue, the major controversy of the 2000 conference in Durban, South Africa, began to materialize in the spring of 2000 when South African President Thabo Mbeki undertook consultations with scientists from outside the medical mainstream who question the huge body of evidence which indicates that HIV is the cause of AIDS. Mbeki's actions cast a pall over the conference, and sparked discussion of a boycott by those concerned that meeting in South Africa might seem to endorse such views.

Ultimately, the conference did proceed without major boycotts. But so rancorous was the debate that former South African President Nelson Mandela, a hero in the struggle against apartheid, decided he had to use his keynote address to defend his ally Mbeki. Meanwhile, a group of over 5000 scientists felt compelled to issue a "Durban Declaration" forcefully restating the evidence that AIDS is caused by HIV. These scientists and countless others warned that the cause of HIV prevention and treatment might be incalculably set back by their seeming dismissal by the Mbeki administration.

In the months that followed Durban, however, a relative equilibrium seemed to be restored. Sensing the damage being done to his presidency and reputation, both at home and abroad, Mbeki withdrew from the debate over the HIV. Deprived of a platform, HIV skeptics began to recede back to obscurity.

And, perhaps most importantly, the conference did in the end succeed in bringing the catastrophe of AIDS in Africa to the attention of the world. Many conference attendees, in fact, reported that they had witnessed a sense of urgency and a revitalization of activism not seen for most of the 1990s. A potential disaster had somehow muddled its way to success.

Missed Opportunities: Turning Points in the AIDS Epidemic, 1977-1985

The preceding "scenes from an epidemic" have examined several of the major historical events that have shaped the AIDS epidemic. This final "scene," however, considers an "alternative history" in which greater leadership at major turning points might have caused the epidemic to play out very differently.

January 20, 1977: The Inauguration of President Ted Kennedy
Fulfilling the promise of his slain brothers, Edward M. Kennedy was sworn in today as the 39th President of the United. Moving beyond the personal scandals of his past and backed by a solid Democratic majority in Congress, Kennedy vows to initiate major progressive reforms, including the launch of a network of community-based health care clinics.

Soon afterward, a health system established that promotes comprehensive sex education and reproductive health services to help prevent the spread of genital herpes, hepatitis B and any other sexually transmitted diseases that may emerge.

November 22, 1978: San Francisco Supervisor Dan White Arrested
San Francisco police arrested former supervisor Dan White today after he attempted to enter City Hall with a loaded revolver. An emotionally distraught White told police that he intended to kill Mayor George Moscone and Supervisor Harvey Milk, the openly gay politician who was his political opponent.

The following October, Milk gives a spellbinding keynote address to a nationwide March on Washington which establishes him as the "Martin Luther King, Jr." of the gay and lesbian rights movement, and the movement's first truly national leader.

December 1, 1981: "Kennedy centers" Respond to Unusual Cases of Immune Deficiency
The national network of primary health-care clinics, known as the "Kennedy centers" because of their patronage by President Ted Kennedy, began a vigorous outreach and education effort amidst unexplained cases of immune deficiency within the gay male communities in major cities. The recently re-elected Kennedy announced the new program at a press conference with gay leader Harvey Milk.

The term "safer sex" becomes universally known, and widely practiced, by the end of 1981. After being endorsed by Milk, safer sex is accepted, although reluctantly, by many sectors of the gay community. Without such an initiative, the idea of safer sex might have taken years to become entrenched.

June 6, 1983: Catholic Archbishop of Chicago Announces Support for Use of Condoms
Joseph Cardinal Bernardin, a leading moderate among U.S. Catholic bishops, today gave an address on the theological principle of "double effect," which allows for the morality of certain types of behaviors that are intended to achieve good results, even if they have unintended negative side effects. In his address, Bernardin called upon this historic Catholic principle to support the use of condoms in order to prevent the spread of HIV, even though condoms can have the have the unintended side effect of contraception, which the Vatican prohibits.

Under this doctrine, hundreds of Catholic schools and health-care facilities throughout the U.S. as well as Europe, Latin America, and Africa begin to revise their restrictive policies regarding condom distribution and their political opposition to sex education.

November 3, 1983: Rock Hudson Reveals He Has AIDS
Actor Rock Hudson revealed today that he has been diagnosed with AIDS. The Hollywood legend's stunning revelation took the country by storm and sparked a widespread public recognition that everyone may be vulnerable to HIV infection.

In the two years before his death in October 1985, Hudson becomes the world's most prominent person with AIDS and a leading figure advocating for research, treatment, and prevention of HIV.

December 21, 1984:
Congress Passes Comprehensive Needle-Exchange Bill
Based on a model successfully implemented in the Netherlands, Congress today passed a bill providing emergency funds for needle-exchange and urging states to decriminalize syringe possession. Proponents of the law argued that without needle exchange, hundreds of thousands of injecting drug users, their sexual partners, and their children might become infected with HIV, causing the AIDS epidemic to become entrenched among the most vulnerable sectors of society.

The epidemic among injecting drug users never gets off the ground in the U.S., and thanks to U.S. foreign aid programs, needle-exchange and condom distribution become established throughout the developing world. At a global summit in 1985, world leaders agree to provide massive funding for HIV prevention activities, development of an effective vaccine, and refinement of antiviral medications. Although acknowledging that many thousands will die of AIDS, the leaders dedicate themselves to emulating the successful global eradication of smallpox and set a goal of containing the spread of the HIV by the year 1987.

Raymond A. Smith, Ph.D., is the editor of Body Positive and of the Encyclopedia of AIDS.