The Origin of HIV
Scientists suggest that traces of HIV date as far back as 1931 in the Democratic Republic of Congo. Before the 1980s, researchers estimate that about 100,000 to 300,000 people contracted HIV around the world.
In 1969, a Black teenager in St. Louis named Robert Rayford died of an illness that baffled his doctors. Officially, his death was the result of pneumonia. Robert Rayford, also known as “Robbie” or “Bobbie,” was said to have been shy and socially awkward and possibly had a cognitive disability. Little is known about the young man’s life. His doctors have stated that Rayford often avoided or refused to share much information about his life or family; however, it has been suggested that he contracted an HIV-like virus through sexual assault. Nineteen years later, in 1988, molecular biologists at Tulane University in New Orleans tested samples of his frozen tissue and found evidence of HIV, although the lack of 100% certainty of these test results is still talked about in the scientific and public health communities. Still, Robert Rayford is often remembered as the first known case and fatality of HIV-1 in the United States.
Many people in the LGBT community and health care workers anecdotally say they were beginning to see people die mysteriously in the 1970s, from what they now believe were HIV-related illnesses. But it was on June 5, 1981, that the Centers for Disease Control and Prevention (CDC) noted in its Morbidity and Mortality Weekly Report the appearance of a rare pneumonia in five young gay men in Los Angeles. Additionally, the men, all of whom would die, showed compromised immune systems. Across the country, a New York dermatologist tipped the CDC to a baffling spate of cases of an aggressive cancer called Kaposi’s sarcoma. Each of these cases appeared in gay men. Newspapers and other media outlets began to report about a “gay men’s pneumonia” and “possible gay cancer.” Headlines across the United States and, shortly thereafter, the world, claimed a new “Gay Cancer” was responsible for the otherwise uncertain cause of death of multiple gay and bisexual men. At the close of 1981, there were 270 reported cases of severe immune deficiency among gay men, and 121 of them had already died. Uncertainty lead to fear in queer communities; acknowledgement and, therefore, action were almost nonexistent in mainstream culture and communities.
By 1982, the scientific and medical communities realized that the symptoms and related conditions were due to a virus that was compromising the immune system. The CDC first named it “gay-related immune deficiency,” or GRID. Later, they would refer to it as acquired immune deficiency syndrome, or AIDS. Hallmarks of AIDS included a loss of essential immune system cells (CD4 cells) and the development of opportunistic infections (such as Pneumocystis pneumonia) and cancers (such as Kaposi’s sarcoma), diseases that occur much more often in people with compromised immune systems.
The first HIV-based travel ban was also initiated in 1982, when the Reagan administration prevented Haitian people from entering the United States in reaction to what was known at the time as the four H’s of risk (homosexuals, hemophiliacs, heroin “addicts,” and Haitians). This policy based in racism and fear-mongering led to many years of protests by U.S. activists, including the Rev. Jesse Jackson.
In 1983, the scientific community identified the virus that causes AIDS. They first named the virus “human T-cell lymphotropic virus type III.” Later, researchers changed the name to human immunodeficiency virus, or HIV. They also identified the leading methods of HIV transmission and learned that a person could not contract HIV from air, water, food, or casual contact. Meanwhile, fear, hate, and stigma ensued through mainstream America and focused on those most affected at this time—gay men.
The AIDS Activist Is Born, and New Organizations, Policies, and Programs Are Created
Out of the fear, hate, stigma, shame, and death, came the seeds of legendary and prolific AIDS activism. Some of the earliest activism led to the creation of Gay Men’s Health Crisis (GMHC) in 1982. Founded by writer Larry Kramer and a small group of his friends and other volunteers, GMHC began to organize and raise money for research, and started the first AIDS hotline. The group received over 100 calls in the first night alone. Other community agencies began to pop up in Los Angeles, New York, and across the country.
By 1985, more than 6,000 Americans had already died. The budget for AIDS research was a fraction of what the U.S. government spent on diseases that were far less threatening ($96 million was allotted to AIDS research that same year); President Ronald Reagan didn’t say the word AIDS in public until that year; actor Rock Hudson announced his AIDS diagnosis (he was also personal friends with Nancy and Ronald Reagan); and only one private pharmaceutical company was seriously pursuing a treatment. It was local activist groups that demanded care, treatment, funds, media, and acknowledgment from mainstream culture and from the Reagan administration. Upon his death in October 1985, Rock Hudson left $250,000 to start the American Foundation for AIDS Research (amfAR), making way for future celebrity charity foundations to begin AIDS work.
In the absence of major federal attention or support, it was local queer communities that began the fierce activity that mainstream America eventually took notice of, but there was some help coming. It was actor and philanthropist Elizabeth Taylor who lent her international celebrity, time, and money to force AIDS into the mainstream. After her good friend, Rock Hudson, died of AIDS, Elizabeth Taylor co-founded amfAR and regularly lobbied President Reagan and Congress to address the crisis. She would go on to establish the Elizabeth Taylor AIDS Foundation in 1991 to provide direct care to those living with AIDS.
Gay Black man were not silent during the crisis, either. There were already many local Black LGBT groups that had formed in the late ’70s and early ’80s, many as cultural organizing projects. In 1986, Gay Men of African Descent was founded in New York City and began to use culture, art, and activism to make the needs of Black gay men more visible to the larger LGBT community and within Black communities in New York. Also in 1986, Black gay activist Craig G. Harris stormed the stage of the American Public Health Association (APHA) meeting to hold public health officials accountable for their resistance to and disinterest in including Black people in HIV-related policy, health practice, and funding decisions and in public engagement—but especially to call out the APHA for not including people of color in the first-ever HIV plenary. When storming the stage at the APHA, Harris proclaimed, “I will be heard!”
By the end of 1987, the United States death toll to AIDS had surpassed 40,000. Worldwide numbers reached past 5 million. Queer communities were particularly fearful and angry. It was in 1987 that the first reports emerged showing HIV/AIDS was disproportionately impacting Black people, which furthered the activism in communities of color by organizations like the National Task Force on AIDS Prevention, the National Coalition of Black Lesbians and Gays, and the National Minority AIDS Council (NMAC). It was this anger and fear that led to world-class community organizing, fundraising, protest art, and lobbying.
The most well-known group to arise from this period is the AIDS Coalition To Unleash Power (ACT UP), which gained national attention for their protest, work, and commitment to the political and commercial arms of the epidemic. ACT UP was founded in New York City in 1987 by a group of gay men and allies but transformed quickly into an international movement, with chapters that organized militant actions of civil disobedience to not only raise public awareness of the crisis, but push for funding and policies for people with AIDS in the areas of biomedical research, clinical trial design and access, evidence-based education, harm reduction, social safety net programs, and efforts against discrimination and stigma.
Art played a role in the national AIDS response. The Silence=Death Project , a consciousness-raising group founded by Avram Finkelstein in 1987, launched a powerful and graphic campaign that became a pillar of the AIDS movement and the LGBT movement alike. The poster campaign consisted of the project’s title and a pink triangle, which during the 1970s had become a gay pride symbol reclaimed by the gay community from its association with the persecution of homosexuals in Nazi Germany and the Holocaust. The image would be used by ACT UP in protests and campaigns for the next several decades.
The NAMES Project AIDS Memorial Quilt (also known as the AIDS Quilt), a memorial to celebrate the lives of people who have died of AIDS-related causes, also began in 1987. Each quilt panel is decorated and crafted to celebrate the life a person who died of AIDS. The quilt was displayed for it first national showing in 1987 on the National Mall in Washington, D.C. Weighing an estimated 54 tons, it is the largest piece of community folk art in the world. Parts of the quilt have been archived by the Library of Congress. The project was nominated for a Nobel Peace Prize in 1989.
Black gay filmmaker Marlon Riggs, whose legendary documentary film about the lives of Black gay men in the first wave of the AIDS pandemic, Tongues Untied, debuted in 1989, was critical in breaking with the idea that HIV was just an issue for white gay men. The film was also critical of homophobia in the Black community as well as racism in the white gay community, both of which fueled virus spread among Black gay men. The film became national news in the early 1990s, when the PBS show POV was set to air it and was met with calls to defund PBS by religious conservatives, including Pat Buchanan, who was running for the GOP presidential slot occupied by incumbent President George H. W. Bush. Some PBS affiliate stations chose not to show the film due to the controversy, but it has since become one of the works that continues to inspire Black gay activism and art.
One of the most influential books of the epidemic is Randy Shilts’ And the Band Played On: Politics, People, and the AIDS Epidemic, published in 1987. Through investigative journalism, Shilts chronicles the early ’80s discovery and spread of HIV/AIDS and government indifference, as the government neglectfully allowed the disease to flourish in queer communities. In 1993, HBO adapted the book into an HBO film of the same name. Shilts got tested for HIV while he was writing the book; he died of AIDS in 1994. The book introduced the now-debunked idea of Patient Zero, who was thought to be a promiscuous gay French-Canadian flight attendant named Gaetan Dugas, who was first named in CDC contact tracing reports in 1981, as several gay men who had contracted HIV named Dugas as a partner. It was even speculated that, being a flight attendant, Dugas had been to Haiti and contracted HIV there, and then transmitted it in the U.S. This theory inadvertently helped further the notion of foreign bodies, whether Black or gay, as vectors of disease and a public health threat. Activism through the next decades would seek to reverse this notion and its subsequent stigma.
Activists were also pushing for changes in clinical research trials at the National Institutes of Health (NIH), and the process of accessing medications through the Food and Drug Administration (FDA). Activism pushed the FDA to fast-track the first drug approved for the treatment of AIDS, azidothymidine (AZT). It was approved for release by the FDA with only a single research study to back up its efficacy, which led many critics to suggest AZT was not a reliable treatment for HIV. AZT was notorious for its severe and numerous side effects at its originally approved dose, and its unaffordable price. In 1989, ACT UP protested the pharmaceutical sponsor of AZT, Burroughs Wellcome, at the New York Stock Exchange. The cost of AZT in 1989 was approximately $10,000 per patient per year (roughly $20,875 today). Following this protest, Burroughs Wellcome dropped the drug’s price by 20%.
The medical research and community activism of the 1980s begets change in the 1990s. On April 8, 1990, Ryan White, a teen from Indiana who contracted HIV from a blood transfusion in 1984, died at the age of 18 from AIDS-related pneumonia. Ryan White became a national advocate for public education and AIDS when he rallied to return to public school after his diagnosis. Federal care and services legislation named after the young advocate would be passed in August 1990 and titled the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act. It has been reauthorized by Congress four times since and continues to serve more than half of all people diagnosed with HIV in the U.S.
ACT UP continued their activism work into the 1990s. Katrina Haslip, a Black woman living with HIV and "jailhouse laywer" incarcerated in Bedford Hills Correctional Center in New York along with attorney and activist Terry McGovern with the National ACT UP Women's Committe, launched the campaign to have the list of “AIDS-defining illnesses” expanded so that more women living with HIV/AIDS could receive essential Medicaid, Medicare, and Social Security benefits, which included an action at CDC headquarters in Atlanta. They eventually won the fight but Haslip died in a hospital in New York City in 1992, just weeks before the definition of AIDS was officially changed.
ACT UP and GMHC continued their fight through the 1990s to get the FDA to create accelerated approval mechanisms, as well as compassionate use and expanded access frameworks that now are available for all people with serious conditions that lack approved treatments, making their work not just about HIV/AIDS but for the rights and health needs of people with a variety of illnesses.
Medical and pharmaceutical breakthroughs through the early to mid-1990s created more effective treatments. In December 1995, the FDA approved the first protease inhibitor for use in combination with other HIV drugs, ushering in a new era of highly active antiretroviral treatment (HAART). Once incorporated into clinical practice, HAART brought about an immediate decline of between 60% and 80% in rates of AIDS-related deaths. Treatment remained expensive and often times inaccessible due to cost, the sometimes severe side effects (some of which were visible), and the challenge of taking multiple drugs a day, often at different times with different requirements (some taken with food, some on an empty stomach, for example). Then in September 1997, the FDA approved Combivir, a combination of two antiretroviral drugs, taken as a single tablet twice daily, making it easier for people living with HIV to take their medication. This marked the beginning of the new era of single-tablet regimens, culminating when Atripla (efavirenz/tenofovir disoproxil fumarate/FTC) was approved in 2006—the first one-pill, once-daily antiretroviral therapy. While the new treatment was certainly a game-changer, the racial disparities in HIV diagnoses and death rates continued to worsen, as the disease became more entrenched in Black and Brown communities while beginning to drop more rapidly among white gay men. Responding to the changing demographics in HIV rates, the U.S. government created the Minority AIDS Initiative (MAI) in 1998 to respond to growing concern about the impact of HIV/AIDS on communities of color by creating dedicated resources for HIV prevention and treatment programs for people of color in the United States.
The early 2000s were significantly marked by the development and refining of antiretroviral treatments. People living with HIV or AIDS saw their treatments drop to three-, two-, and one-pill-a-day regimens. Side effects from HIV medications became less common and less severe. People with HIV began to live longer, healthier lives. Testing methods were also refined to oral swab and finger prick methods, producing results in minutes. Over-the-counter test kits became available to the public and in community health centers across the country. The CDC greatly expanded HIV testing and issued new guidance for all Americans to be tested for HIV annually, as part of routine health care, while calling for people more at risk for HIV to be tested even more frequently. For people who were living with HIV, more evidence began to mount that it was better to start treatment sooner than waiting for CD4 counts to drop to levels where illness would be more likely. Soon, that became known as “test-and-treat”—a strategy that was adopted by health care providers in an effort to control and care for people with HIV.
One of the biggest political and cultural issues in the early 2000s was the growing media focus on HIV among African Americans. More specifically, media stories about Black men “on the down low” began to dominate the national discussion, which attempted to explain the high rates of HIV among Black women by saying Black men who were bisexual (and didn’t disclose their gay sexual desire or practices to their Black women partners) were responsible for the high rates of HIV among Black women compared to other women. While some Black HIV activists (including women) decried these media stories as criminalizing Black male sexuality, these stories persisted for many years. And in them, Black gay men were usually only ever discussed as vectors of the disease—not also as victims of systemic racism and homophobia. Many Black gay activists worked actively to challenge these stereotypes, most notably with Keith Boykin’s 2005 book, Beyond the Down Low. Also, research studies were done that disproved the idea that Black bisexual men were a bridge of HIV transmission from Black gay men to heterosexual Black women.
Due to intense, ongoing pressure from activists, the early 2000s also saw major support and funding for domestic and international HIV/AIDS relief by President George W. Bush and his administration. Beginning in 2001, the administration delivered more than $148 billion to fight HIV/AIDS, created the President’s Emergency Plan for AIDS Relief (PEPFAR), created the Office of the Global AIDS Coordinator under the Department of State, and put funding to support HIV prevention and treatment efforts in many federal agencies, including the CDC, Department of Defense, Department of Commerce, and the Peace Corps. President Bush’s PEPFAR included plans to address prevention, treatment, care, and housing needs. But the program also came under fire for making countries receiving PEPFAR funding promote abstinence-based sex education and prevention programs, as well as preventing funding from going to institutions that provided abortion education or services to women.
By 2005, 1 million Americans would be living with HIV. After PEPFAR was implemented, U.S.-based HIV activists began to question why PEPFAR required country plans for HIV prevention and care in order to receive funding, when the U.S. had no such plan for its own residents. In May 2007, HIV activist Chris Collins published Improving Outcomes: Blueprint for a National AIDS Plan for the United States, which provided a vision for U.S.-based activists to rally around. The same year, the Community HIV/AIDS Mobilization Project (CHAMP) began mobilizing U.S. groups around a vision to create a U.S. HIV plan (Housing Works had also begun a national project, Campaign to End AIDS, or C2EA, in 2005 around the same idea). The election of President Barack Obama in November 2008 was a watershed moment for many Americans and also helped support many longstanding policy changes HIV activists had been mobilizing around. As transgender activists began to create more organizations and push for more visibility and representation (sans violence and discrimination in America), the community also began to push for more representation at all levels of the HIV response. This included a push to remove transgender women from “men who have sex with men” data sets (and remove transgender men from the category of women) collected by local and state health departments as well as the CDC.
The AIDS Pandemic Gives Way to HIV as a Chronic Disease in the Obama Era
In 2009, Barack Obama was sworn in as the 44th president of the United States. Obama was seen as a champion of HIV/AIDS, making it a top priority of his administration, with policy priorities for the development and implementation of a National HIV/AIDS Strategy (NHAS), a success of activists’ work during the Bush presidency. NHAS included three primary goals: reducing HIV incidence, increasing access to care and optimizing health outcomes, and reducing HIV-related health disparities. NHAS, coupled with the Affordable Care Act’s passage in 2010, allowed for further funding opportunities, better access to comprehensive health care, an end to legal protection for discriminatory health care coverage practices, expansion of community health initiatives, introduction of cultural competencies to care and treatment practices, and an increase in the health care workforce, as remedies in the domestic fight to eradicate HIV/AIDS. Also in 2009, the Obama administration ended the travel ban on HIV-positive visitors and immigrants, which had been in place since 1987.
The field of biomedicine and HIV had grown, and so had its influence on how activists would help transform ideas of safe sex, prevention, and state laws that criminalized non-disclosure of HIV status or exposure to the virus. The 2010s also saw the introduction of PrEP, or pre-exposure prophylaxis, for the prevention of HIV. In 2012, the FDA approved the drug Truvada (FTC/tenofovir disoproxil fumarate), which had previously been used as a component of HIV treatment, for use as PrEP, based on growing evidence that the drug was safe and effective at preventing HIV in HIV-negative populations at increased risk of acquisition. This transformed the prevention landscape, just as condom use was beginning to wane in all demographics.
Also at this time, the scientific community released multiple studies that demonstrated that people with HIV on antiretrovirals who became virally suppressed, or “undetectable,” could not sexually transmit the virus to partners, even without condoms or other barrier methods. Though these studies were circulated through public health researchers and some advocates, there was no plan to widely disseminate these findings publicly, causing some people living with HIV to accuse researchers of infantilizing the community. And with that, the phrase, “undetectable equals untransmittable,” or U=U, was born—and Bruce Richman and his newly formed organization, Prevention Access Campaign, launched an international advocacy effort. The U=U movement has been instrumental in both destigmatizing HIV status and in pushing more public health programs and providers to use this information to empower people living with HIV and change the discourse of people living with HIV being a threat to others.
As treatments for HIV got better, more tolerable, and generally more accessible, HIV activism in the 21st century began to push for tools to address the racial, gender, and regional disparities in the epidemic. This activism took on access to PrEP, post-exposure prophylaxis (PEP), and antiretroviral therapy, but also demanded changes in the social determinants that drive the various disparities in contracting the virus. This marks the amplification of an HIV/AIDS activism deeply rooted in the social and structural challenges facing those living with and vulnerable to the virus, which included the social-political fight to attack stigma in law and government decision-making and HIV criminalization laws, and the demand for fair distribution of funding and resources to people of color and impoverished and rural communities. The internet and social media created new opportunities, allowing communities across the country to share resources and information, and to do different forms of activism.
HIV ravaged queer, creative, and Black and Brown communities from the 1980s onward, taking with it some of the most important, significant, and powerful leaders and influencers in art, film, dance, sports, community organizing, politics, and a host of other great minds in dozens of other disciplines. It has been said that we lost a whole generation of prolific inspiration within the creative worlds. The 2010s saw a rise of the creative projects that honored the work and activism of people who fought for dignity, rights, and justice for people living with HIV, with new TV shows, films, books, and art exhibits. A new generation of activists has gotten interested in the activism of ACT UP and its tactics, as well as rediscovering the artistic and intellectual work of Black gay activists like Marlon Riggs, Essex Hemphill, Joseph Beam, and Melvin Dixon.
But in the mid-2010s, armed with new prevention tools and the knowledge that people who were virally suppressed couldn’t pass on the virus, activists began to understand that the concept of ending the HIV epidemic was no longer a far-fetched idea. The city of San Francisco was already getting close, but activists in New York State, led by Housing Works and Treatment Action Group, decided to push the newly elected Gov. Andrew Cuomo to develop a plan to end the epidemic in New York State by 2020. Activists and health department leaders in dozens of cities, counties, and states got inspired and began to also develop their own localized plans. This grassroots effort made its way to Health and Human Services leadership in the Trump administration (which was already under fire for closing the White House Office of National AIDS Policy and because the Obama-era holdovers from the Presidential Advisory Council on HIV/AIDS, or PACHA, walked from their appointed positions in protest of Trump’s terribly racist, sexist, and xenophobic record).
At the State of the Union Address in 2019, the Trump administration announced it was going to create a federal plan to “end the HIV epidemic by 2030” and requested $291 million in its fiscal year 2020 budget. The goal of this initiative is to reduce new HIV infections by 90% in the next 10 years. With or without the influx of these new monies, you can be sure that the medical, public health, queer, and creative communities across America will continue to fight HIV/AIDS with activism, science, medical intervention, and demands for government accountability, as they have done since the early 1980s. As it is said within the community, “Nothing for us, without us!”