History of LGBT: AIDS and People with AIDS

Jennifer Brier. Encyclopedia of Lesbian, Gay, Bisexual, and Transgendered History in America. Editor: Marc Stein. Volume 1. Detroit: Charles Scribner’s Sons, 2004.

The Acquired Immune Deficiency Syndrome (AIDS) has fundamentally changed many aspects of life in the United States since doctors diagnosed the first cases in the early 1980s. This has been most true for the gay community, which has had to cope with the fact that, at least initially, the overwhelming majority of documented cases of AIDS in the United States were among men who have sex with men. The disease forced gay men in the U. S. to reevaluate sexual practices and mores, and drastically changed the medical system and the political landscape to deal with the effects of the AIDS epidemic in America, and in turn, the world. As the AIDS epidemic has evolved over the last two and a half decades, it has increasingly affected many different groups within the LGBT community, particularly gay men and lesbians of color, transgender people, and gay and lesbian intravenous drug users. The effect of this transformation on already diverse communities has proven that AIDS was, and continues to be, more than a medical crisis. It is in fact a political crisis that requires a political solution, a chant made popular by the activist group ACT UP at rallies in the late 1980s and early 1990s.

Early Epidemiology

In June 1981, the Centers for Disease Control’s Morbidity and Mortality Weekly Report (MMWR) reported on a strange disease infecting five gay men in Los Angeles, California. This illness weakened the men’s immune system so severely that they contracted Pneumocystis carinii pneumonia (PCP), a form of pneumonia that was exceptionally rare in healthy young people. Each of the five men also was infected with cytomegalovirus (CMV), a virus related to herpes. A month later, another article appeared in the MMWR detailing similarly surprising cases of gay men with PCP in New York City. The report also told of twenty-six men who had been diagnosed with Kaposi’s sarcoma, a kind of cancer that until that time had been diagnosed only in older men of European and African descent. In addition to voicing a fear that these men represented the first cases of a new disease, both articles expressed the idea that the disorders were probably related to “some aspect of homosexual lifestyle.”

These first reports of what health care providers and government scientists initially called Gay-Related Immune Deficiency (GRID) profoundly shaped both the course of the new epidemic as well as the diverse responses that emerged to deal with it. Even when public health officials, at the behest of gay activists, created the term “Acquired Immunodefiency Syndrome” and its acronym AIDS in July 1982, most people continued to consider AIDS to be a gay disease, which effectively meant that being gay caused a man to get sick.

While the idea that AIDS was a gay disease continued to gather steam, as early as December 1981 public health officials reported immune disorders in heterosexual intravenous drug users. Not long after these initial reports, studies showed that a significant number, about 22 percent, of all people with the disease were heterosexual. It soon became apparent that children born to women with AIDS were also at risk of contracting the disease. In 1982, public health officials reported a statistically significant number of Haitians with immune disorders. Within a few months of that documentation, the first case of immune disorders also appeared in a hemophiliac, and by 1983 twenty-one U.S. hemophiliacs had been diagnosed with AIDS.

To account for the different groups of people who seemed especially at risk for contracting what appeared to be AIDS, epidemiologists categorized these new cases as belonging to one of the “four H” groups—homosexuals, Haitians, heroin users, and hemophiliacs. Almost immediately, the emerging public face of AIDS was linked to certain kinds of people instead of to certain kinds of behaviors. Public health officials regularly talked about the likelihood that a member of a risk group would be infected with AIDS, but rarely seemed interested in detailing how a person’s behavior, whether sexual or not, made him or her more likely to become infected. This construction had major implications for how the epidemic would be reported and understood from then on.

Initial Search for Causes


As soon as the first reports of a new disease affecting gay men appeared in the mainstream medical press, the gay press began an effort to translate this scientific discovery into language its readership could understand. Journalists struggled to comprehend a disease that they realized could be used against the community, contributing to a wide-ranging speculative conversation about “lifestyle” and illness. The New York Native, New York City’s biweekly gay newspaper, was one of the first to report on the new medical condition. In fact, only ten days after the June 1981 MMWR article on the “gay” cancer, the Native published its first reports written by the medical adviser Dr. Lawrence Mass. Theories about what caused the disease appeared in numerous forms. Initially, some scientists and gay men hypothesized that recreational drugs played a key role. In this theory, gay men’s use of poppers, a chemical inhalant that enhanced sexual arousal, threatened the immune system to such an extent that it caused illness. Facetiously, although with a modicum of fear, the Native’s Dr. Mass wrote in a 1982 article entitled “The Epidemic Continues” that other factors “might touch on being gay and living in New York. On the superficial basis of numbers alone, of course, wearing handkerchiefed Levi’s and having Judy Garland records in one’s collection might also seem risky” (p. 1). Another prominent physician, Dr. Joseph Sonnabend, argued that the disease was not caused by an infectious agent, but rather was the culmination of an overloaded immune system produced by consistent exposure to various sexually transmitted diseases. Sonnabend was one of the first in the gay community to connect AIDS to the sexual revolution, though he tried to resist being labeled moralistic or antisex. As these competing theories circulated throughout the gay community, epidemiologists at the U. S. Centers for Disease Control studied people who displayed the new illness. Throughout 1981 and 1982, a team of scientists and doctors analyzed reported cases to try to determine whether the illness was caused by an infectious agent or by environmental factors as had been the case in the 1976 outbreak of Legionnaires’ disease, caused by a bacteria circulating in a hotel’s air conditioning system. By 1982, scientists began to collect enough evidence to confirm that AIDS was probably caused by an infectious agent, even though the actual agent remained unidentified. At the same time, these scientists tried to document how this agent spread between people. Almost immediately they began to define the disease as infectious and not contagious. This was an important distinction because it suggested that AIDS could not be spread through casual contact. Instead, early investigations indicated that sexual practices produced conditions that made transmission possible.


At the same time as scientists looked for the medical cause of AIDS, epidemiologists sought to understand the etiology of the syndrome. Following this lead, journalists began to investigate the question of where the disease came from. Because Haitians were deemed a high-risk group, public health officials focused on the role of the Caribbean island’s culture in the spread of the disease. Relying on what were in fact racist assumptions, some argued that supposed voodoo practices involving animal blood put Haitians uniquely at risk for contracting AIDS. This posed a danger to the United States because the island was known as a favorite destination for gay male tourists who would return to the United States after having frequented infected male prostitutes in Haiti. This epidemiological model effectively stigmatized and marked Haitians as an AIDS threat, even though little, if any, scientific evidence could link Haiti or Haitians with AIDS. People interested in documenting the geographical origins of AIDS also turned their attention to the African continent, another area where early AIDS cases were identified. In the early 1980s cases of an illness that had a similar presentation to AIDS appeared in several African countries. This epidemiology, when coupled with the long held belief that most infectious diseases had origins in the third world, telescoped media attention and public health studies on Africa. Newsweek carried one of the first cover stories on AIDS to run in a national magazine in July 1983. In it a French epidemiologist suggested that AIDS came from Equatorial Africa, while another doctor who specialized in the study of tropical disease thought that Cuban soldiers returning from military duty in Angola brought AIDS to Cuba and then to the Cuban community in Miami. Some of these hypotheses were fleeting, particularly because the investigators lacked sufficient evidence to substantiate their claims. The underlying impulse to study the origins of AIDS in Africa, however, remained strong, effectively solidifying the connection between AIDS and Africa in the popular imagination.

Early Community-Based Response

The focus on where AIDS originated was, for many dealing with the consequences of the epidemic in their daily lives, the wrong approach in confronting the disease. Across the nation, gay men without any formal medical training attempted to address a general lack of knowledge and the growing discrimination and fear of AIDS by organizing community-based responses to the epidemic. They did this in three distinct ways: first by trying to imagine new communal practices, both sexual and social, to confront AIDS; second by creating networks to provide services for people with AIDS; and third by launching criticisms of various segments of society from the federal government to the gay community itself for failing to address the epidemic.

Some of the first lay people to discuss AIDS in print, Michael Callen and Richard Berkowitz, suggested that in the age of AIDS gay individuals had a responsibility to change their sexual behavior and embrace an ethic of caring. In 1983 Callen and Berkowitz, two gay men living with AIDS in New York City, published How to Have Sex in an Epidemic. The book represented an attempt to provide a manifesto for how the gay community should respond to AIDS, including the first description of “safe sex” as a form of AIDS prevention. In this book, Callen and Berkowitz critiqued the proliferation of commercialized sexuality that had become central to gay life in the aftermath of the sexual revolution of the 1960s and ’70s. They argued that the effects of AIDS would not end the struggle for gay liberation, as many in the popular press claimed, but rather had the potential to resuscitate the most progressive and anticapitalist aspects of the movement.

Still, some people in the gay community believed that too little was being done to stem the tide of the AIDS epidemic. The most vociferous member of this group was Larry Kramer, a New York playwright and novelist. In numerous articles written over the course of the first decade of the epidemic, Kramer criticized the mainstream media for failing to report on AIDS, the gay community for ignoring the extent of AIDS, the federal government for removing the social service safety net for people with AIDS, and the New York City municipal government, particularly Mayor Ed Koch, for refusing to meet with AIDS activists. While Kramer was one of the founding members of the Gay Men’s Health Crisis (GMHC) and AIDS Coalition to Unleash Power (ACT UP), his stinging prose left many people unwilling or unable to hear his arguments, and foreshadowed major divisions within the gay community over the need to eliminate or at least drastically change sexual practices that put people at risk for contracting HIV/AIDS.

Other gays and lesbians began to devise a system for helping people directly affected by AIDS in conjunction with the effort to create material that would be used as AIDS prevention within the gay community. In 1983 at the Second Annual AIDS Forum held in Denver, attendees formed the People with AIDS Coalition. The group’s members, all of whom had AIDS, fought to resist the idea, propagated by the media, that they were victims of AIDS, powerless to deal with the effects of the disease. The Coalition built on models for establishing gay-positive health institutions first suggested by the Women’s Health Movement of the 1970s. In keeping with this model, they wanted to be known as People with AIDS (PWAs) who could live with AIDS if society in general and the health profession in particular treated them with respect. The group encouraged all people with AIDS to come together and resist the isolation that accompanied illness.

Women participating in the AIDS Forum informally created the Women’s AIDS Network (WAN) at the same time. It took a few months for the group to take hold, but by 1984 women in San Francisco came together to help provide services for women affected by AIDS as well as women who provided services to people with AIDS. The creation of WAN highlighted the important role women played in early community organizing. In some cities, lesbians donated blood in honor of gay men who were prohibited from making such donations, calling themselves “Blood Sisters,” while in other places women volunteers provided a backbone for the new community-based organizations set up to address the AIDS crisis. Women, both straight and lesbian, recognized that their history of activism could provide gay men with a powerful example of what a social movement should look like.

Women’s roles as AIDS activists have often overshadowed the existence of women living with AIDS. This has been especially true for lesbians with HIV/AIDS, a group that has been all but ignored by public health officials and many gay men’s AIDS organizations, both of which groups seemed unable to understand how lesbians could be at risk. It was not until 1992 that the Lesbian AIDS Project (LAP) opened at GMHC with the express purpose of designing prevention material and caring for lesbians. LAP not only created public health campaigns that eroticized the use of latex barriers for women who have sex with women, but also focused attention on the particular needs of lesbians who were sex workers and IV drug users.

Initial Governmental Responses

Much of the initial work done within gay communities highlighted the blatant inaction of the federal government in the first years of the AIDS epidemic. The minimal response was made possible because the first cases of AIDS were documented at the same time that the Reagan administration sought to drastically cut expenditure on social services in general and the public health apparatus in particular. This meant that fewer funds were available to study the AIDS epidemic at precisely the moment when study was most needed. In 1985, less than 1 percent of the Public Health Service’s budget was spent on AIDS. In addition to the lack of funds, the election of Ronald Reagan in 1980 signaled the growing strength of conservatism in America, a political ideology whose followers believed that homosexuality had no place in U.S. society. When the federal government did initiate action to address AIDS, it focused more on identifying and isolating people with AIDS than on providing services to them.

To fill the hole created by the lack of federal expenditures, municipal governments, in particular those in New York City and San Francisco, had little choice but to deal with the growing number of AIDS cases themselves. Each municipality, however, responded differently. At the behest of the sizable and organized gay voting block in San Francisco, the municipal government dedicated more funding and attention to AIDS than any other city in America, and significantly more money per person with AIDS than the government of New York City. In 1982, the San Francisco Department of Public Health requested $180,000 to provide funding for AIDS programs and soon thereafter created the AIDS Activities Office to coordinate the services designed for people with AIDS in San Francisco. This signaled the first steps toward instituting an integrated model for helping people with AIDS, including providing city-sponsored mental health services and creating a dedicated hospital ward for people with AIDS at San Francisco General Hospital.

In New York City the government response looked quite different. While New York had significantly more cases of AIDS than any other city, the city’s gay community was not, at least initially, as organized as it was on the West Coast, and therefore was less effective in getting the government to take action. In 1983, the New York City Health Department established a formal AIDS surveillance program, but did not create the Office of Gay and Lesbian Health until several years later. The Office did not have the same kind of authority as the AIDS Office in San Francisco, leaving the bulk of the responsibility to the gay community itself.

Scientific Breakthroughs

In May 1984, two groups of scientists—one in the United States, the other in France—completed studies that connected a then unnamed and unique retrovirus with AIDS. In practice this meant that scientists had isolated the entity that caused AIDS. The French scientists, headed by Luc Montagnier of the Pasteur Institute, named the virus lymphadenopathy-associated virus (LAV), while the American scientists, headed by Robert Gallo of the National Cancer Institute at the National Institutes of Health, named it human T-cell leukemia virus type III (HTLV-III). While the virus was not renamed human immunodeficiency virus (HIV) until 1986, by 1984 it was clear that the virus was not spread through casual contact. All of the groups involved with tracing the epidemiology of AIDS, from public health officials to gay activists continued to vociferously argue that the illness was spread only sexually and through the exchange of blood products.

Once scientists identified the virus that causes AIDS, testing for the presence of that virus not only became possible, it became a central piece of the federal government’s AIDS policy. As early as 1986, the federal government called for a national testing strategy that would allow the government to document who, in fact, was HIV-positive. Many gay groups and AIDS service organizations discouraged testing because they feared how the results would be used. They saw testing as a first step in surveillance that would encourage a kind of organized discrimination. These groups reasoned that testing could not be the only strategy for dealing with AIDS, particularly because the will to provide treatment for those who tested positive was not nearly as strong as was the interest in identifying them.

Increasing Public Awareness

At the same time that the HIV test became a tool to identify people with AIDS, several events brought the AIDS epidemic into sharp relief in the public imagination. In 1985, the famous 1950s heartthrob and actor Rock Hudson disclosed that he had AIDS. The media frenzy surrounding this announcement was tremendous, but highlighted the continued discrimination faced by gay people in America. Although he divulged he had AIDS, Hudson never came out as a gay man. Nonetheless, Hudson’s disclosure forced many Americans to think about AIDS as part of their lives. President Reagan mentioned AIDS in public for the first time when learning of Hudson’s status.

In 1987, St. Martin’s Press published Randy Shilts’ And the Band Played On, arguably the most popular book on AIDS ever written. A Book-of-the-Month Club selection in its first month on the market, And the Band was an instant best-seller. The exposé documented the fundamental failures of both the state and the gay community in early responses to the AIDS epidemic. In fact, Shilts argued that gay men, particularly in their refusal to change sexual behavior, were to blame for the AIDS crisis. Because of this accusation, many of his contemporaries called Shilts a self-hating gay man and argued that his writing would do little to help the gay community cope with AIDS. In spite of this, over 200,000 copies of the book were sold, and people read it as a history of the first decade of the AIDS epidemic.

As Shilts’ book hit the shelves, a group of men in San Francisco came together to document the experiences and lives of people who had died from AIDS by designing and sewing quilt panels dedicated to loved ones. The project had been conceived two years earlier by the San Francisco activist Cleve Jones when he asked people to hold placards with names of people with AIDS at a rally. The resulting quilt not only served to memorialize the dead, it also used a classic American art form, which in turn made the quilt, and the epidemic it represented, significant to people who seemed to have no gay affiliation.

AIDS Service Organizations

As public awareness of the AIDS epidemic grew, community organizing to deal with both the effects of the disease and the prevention of it expanded as well in the form of AIDS service organizations (ASOs). ASOs produced systems to deal with the lack of state-sponsored initiatives. Many initially relied on volunteers, but as the organizations grew they increasingly hired professional staff to address the needs of people with and without AIDS.

In 1982, five gay men met at the writer Larry Kramer’s New York City apartment and formed the Gay Men’s Health Crisis (GMHC). In San Francisco, a similar group was born. First called the Kaposi’s Sarcoma (KS) Research and Education Foundation, it soon became the San Francisco AIDS Foundation (SFAF). Across the country, gay men and lesbians led the movement to create ASOs in cities with significant numbers of people with AIDS. From Los Angeles to Boston and Houston to Chicago, organizations developed to provide treatment and prevention services for city residents. These ASOs created and distributed safe sex material and developed other AIDS prevention campaigns to help contain the spread of AIDS. Organizations such as GMHC in New York and the Shanti Project in San Francisco also designed services to help care for people with AIDS. Whether in the form of a “buddy” system, which paired a volunteer with a person sick from AIDS, or by delivering food to housebound people, these ASOs gave invaluable support to their clients.

Racial Disparities

While AIDS service organizations created a broad safety net for some people living with AIDS and designed AIDS prevention materials for various groups, the disparities in infection rates between whites and people of color continued to grow. By 1986, African Americans and Latinos accounted for 25 percent and 14 percent of reported AIDS cases respectively, but only 11.7 percent and 6.4 percent of the total population. Seven years later the numbers showed even greater inequality. In 1993, the CDC showed that 66 percent of the more than 106,000 reported cases that year occurred among African Americans, and 32 percent occurred among Hispanics.

But these disproportionate statistics did not manifest themselves in policies that effectively addressed the racial disparity. While overwhelmingly white ASOs, and to a lesser extent state and federal governments, attempted to deal with how communities of color were affected by AIDS, the strategies emerged in an environment where conversations about race were ever present, but solutions to the problems created by racism remained few and far between. This led gays and lesbians of color to form organizations to deal with the inequality accentuated by the AIDS crisis. In 1983, activists in San Francisco created the Third World AIDS Advisory Taskforce. The taskforce began with the express purpose of documenting how communities of color experienced AIDS as well as how the membership, made up exclusively of people of color, could help ASOs design culturally relevant prevention and treatment services. In New York City, black gay men led the charge to create the Minority Taskforce on AIDS in 1986. On the national level, the National Minority AIDS Council emerged as an organization dedicated to helping grassroots organizations in communities of color expand.


As the epidemic continued to expand and the government failed to respond, activist groups dedicated to finding political solutions to the epidemic began to emerge. The best example of this activist impulse was the AIDS Coalition to Unleash Power (ACT UP). ACT UP grew out of a series of community meetings held at New York City’s Gay and Lesbian Community Center in Greenwich Village in the spring of 1987, rooted in a history of gay and lesbian activism in the city. The group believed that the only way to end the AIDS crisis was to initiate direct action against federal and local governments as well as industrial giants such as pharmaceutical companies. Some of the group’s first protests, especially those directed at the obvious markers of global capitalism like the New York Stock Exchange, linked the AIDS crisis to economic and political inequalities. Using powerful imagery to argue that homophobia and racism were responsible for AIDS, ACT UP prided itself on deploying advertisements to make its anticapitalist message appealing. The Gran Fury collective of ACT UP created the slogan “Silence = Death,” and soon the words appeared on T-shirts and posters across the country. ACT UP reinvigorated a protest style from the 1960s and 1970s in an attempt to produce the conditions for getting “drugs into bodies,” a slogan that symbolized the work of the group. But real battles within the membership about how ACT UP would deal with the relationship between AIDS, racism, and sexism presented a serious challenge to the group.

Artistic Production

Part and parcel with activist responses to the AIDS epidemic, artists working in various media, used art as both a form of protest and a way to deal with the harsh realities of the epidemic. In 1990, the playwright Tony Kushner wrote Angels in America: A Gay Fantasia on National Themes, a play that sardonically and acerbically chronicled the lives of men dealing with the effects of AIDS. The play ran on Broadway and won both a Tony Award for best play and a Pulitzer Prize for best drama. While some art created to confront AIDS received public acclaim, other artists did not have their work embraced by heterosexual America. Activist filmmakers Marlon Riggs and David Wojnarowicz, who were both HIV-positive, produced documentaries that portrayed the experiences of people with AIDS. Riggs’s 1991 film, Tongues Untied, documented what it was like to be black and gay in America. The film, roundly praised by critics, sparked a major controversy when it aired on public television. The conservative activist Pat Buchanan vilified the film and its maker and used it to argue for defunding the National Endowment for the Arts. Dancers and choreographers such as Alvin Ailey and Bill T. Jones created pieces dedicated to documenting the lives of people with AIDS, and visual artist Keith Haring painted huge public murals designed to fight AIDS. Haring died of AIDS in 1990, but his legacy of activist art continues to be felt today. Within a decade of the first cases of AIDS, the epidemic transformed the art world by infusing it with a new political purpose and taking the lives of numerous artists.

The AIDS Epidemic in the Twenty-First Century

While there is widespread hope for a cure for AIDS, U.S. and worldwide statistics show a devastating pandemic in full swing. Led by the gay and lesbian community, the United States now has a system in place for dealing with the effects of the AIDS epidemic in the twenty-first century. The advent of protease inhibitors, or “the cocktail,” as many people have began to call the drug regime, has effectively prolonged the lives of many people with HIV/AIDS. While these new treatments have made it possible for many in the West to live healthy lives, no system is yet in place to disseminate the drugs to people who cannot afford them, whether they live in the United States or on the African continent. This inequity is most noticeable when the needs of men and women of color are considered. Recent statistics indicate that 70 percent of new male infections will be men of color, most of whom will be men who have sex with other men. The racial disparities are more severe in the case of women, where over 80 percent of new infections will be among women of color. When looking at the international scope of the epidemic, the statistics are truly alarming: an estimated 42 million people are living with HIV/AIDS. The current strategy of AIDS researchers and activists is to attack the disease in all its manifestations as a medical, social, political, and economic phenomenon.