40 Major Moments. How do you capture the experience of HIV and AIDS over a 40-year arc? Today, having diabetes is considered more dangerous than having HIV, which is a very different place than when this horrific nightmare began 40 years ago. Thanks to antiretroviral treatments people living with HIV can expect to have long and full lives, provided they look after themselves and have access to medical care.
They can also become undetectable and enjoy intimate relationships without the worry of infecting loved ones. In 40 years, we are definitely in a much better place, but we also know there's still more work. We need greater, equitable access for people of color and a cure that is available to everyone around the world.
When creating this exhibition we realized that information about HIV and AIDS as it exists now is everywhere and easily accessible due to the internet--but what about the past 20, 30, 40 years? How many of us really know what went down; how terrifying it all was? If you are a Millennial or Gen Z'er, it's hard to underscore the horror of what it was like to survive AIDS in the 1980's and 1990's.
AIDS and HIV have fundamentally shaped not just the LGBTQ+ community but the entire world over the past 40 years. While we were combing through the history, the archives, and data we realized how important it was to share with everyone the beginning, the early history. It serves as a vital reminder with powerful lessons of what's at stake and how we as a community must mobilize to ensure that our needs are represented and addressed.
We know that this is not complete. Yes, there's so much more and we encourage everyone to learn the totality of HIV/AIDS history. Our aim with this digital exhibition is to give you the essence and feel of the early years. We wanted to share some of the early periods before the breakthrough cocktails of antiretroviral drugs radically altered the landscape to make AIDS and HIV manageable, survivable.
As you engage in this online exhibition, we encourage you to ask yourself what insight there is to gain that may apply today in the era of another deadly pandemic.
This digital exhibition is a compilation of digital archives put together from hiv.gov and various media outlets. It's designed to take you back to when it all started, to feel it--to imagine the life of those who were were forced to endure the disease, the many who fought for their lives, those who lost everyone and everything.
AIDS and HIV are indelibly etched in stone in our community. In fact, it was largely in response to the HIV/AIDS crisis that in October of 1983 the Lesbian Task Force of Southern Westchester NOW and the Gay Men’s Alliance of the Hudson Valley joined forces to create a safe space to meet which they called The LOFT: The Lesbian and Gay Community Services Center. The most important thing we can do is learn, never forget the extraordinary contributions that our predecessors gave us and what they lost and sacrificed.
With this exhibition, we honor those who lost their lives, the fearless souls who took care of loved ones who died, the activists who stood up to indifference and cruelty, the scientists who worked tirelessly for breakthroughs, and for the allies who used their influence to make the world more compassionate for those living with AIDS/HIV.
Curated by Jeffrey Guard
Research assistance provided by Leon Abreu
40 MAJOR MOMENTS: An Early History of HIV/AIDS
The Nightmare Unleashed
The records we keep mark June 5, 1981 as the beginning of the HIV/AIDS epidemic in the United States, but in all likelihood it began earlier than this. June 5 was the first coordinated response to a mysterious disease that was affecting young, healthy gay men. What we didn't know then was that this would be the beginning of a horrific nightmare, a true gay holocaust that would decimate an entire generation of gay men along with millions of others around the world.
June 5, 1981: The U.S. Center for Disease Control (CDC) publishes an article in its Morbidity and Mortality Weekly Report (MMWR): Pneumocystis Pneumonia—Los Angeles. The article describes cases of a rare lung infection, Pneumocystis carinii pneumonia(PCP), in five young, previously healthy gay men in Los Angeles.
Los Angeles immunologist Dr. Michael Gottlieb, CDC’s Dr. Wayne Shandera, and their colleagues report that all the men have other unusual infections as well, indicating that their immune systems are not working. Two have already died by the time the report is published and the others will die soon after.
This edition of the MMWR marks the first official reporting of what will later become known as the AIDS (Acquired Immunodeficiency Syndrome) epidemic. The same day that the MMWR is published, New York dermatologist Dr. Alvin Friedman-Kien calls CDC to report a cluster of cases of a rare and unusually aggressive cancer—Kaposi’s Sarcoma (KS)—among gay men in New York and California. Like PCP, KS is associated with people who have weakened immune systems.
The Associated Press, the Los Angeles Times, and the San Francisco Chronicle report on the MMWR article. Within days, CDC receives reports from around the nation of similar cases of PCP, KS, and other opportunistic infections among gay men.
January 16, 1986: The U.S. Center for Disease Control (CDC) reports that more people were diagnosed with AIDS in 1985 than in all earlier years combined. The 1985 figures show an 89% increase in new AIDS cases compared with 1984. Of all AIDS cases to date, 51% of adults and 59% of children have died. The new report shows that, on average, AIDS patients die about 15 months after the disease is diagnosed. Public health experts predict twice as many new AIDS cases in 1986.
1994 AIDS becomes the leading cause of death for all Americans ages 25 to 44.
Not Without A Fight: The Birth of AIDS Activism
Just as soon as word begins to travel about a mysterious illness affecting the community, a community response forms. It was clear, even from the beginning that the government simply did not prioritize gay men dying as important. While there were so many who waged battle against this disease, it's Larry Kramer who became the public face, the iconic symbol of the militant activist, demanding that the government act to save the lives of thousands who were dying across the country.
August 11, 1981: Acclaimed writer and film producer Larry Kramer holds a meeting of over 80 gay men in his New York City apartment to discuss the burgeoning epidemic. Kramer invites Dr. Friedman-Kien to speak, and he asks the group to contribute money to support his research because he has no access to rapid funding. The plea raises $6,635—essentially the only new money, public or private, that will be raised to fight the epidemic for the remainder of the year.
January 4, 1982: Gay Men’s Health Crisis (GMHC ), the first community-based AIDS service provider in the United States, is founded in New York City. In May, volunteer Rodger McFarlane sets up a GMHC information and counseling hotline on his home phone—he receives 100 phone calls from worried gay men the first night.
March 14, 1983: AIDS activist Larry Kramer publishes a blistering assessment of the impact of AIDS on the gay community in the New York Native. The essay, 1,121 and Counting , is a frantic plea for that community to get angry at the lack of government support for sick and dying gay men and the slow pace of scientific progress in finding a cause for AIDS.
June 12, 1983: Eleven gay men living with AIDS take over the plenary stage at the National AIDS Forum in Denver . They issue a statement on the rights of people living with AIDS to be at the table when policy is made, to be treated with dignity, and to be called “people with AIDS,” not “AIDS victims.” The statement becomes known as The Denver Principles [PDF, 19KB], and it serves as the charter for the founding of the National Association of People with AIDS.
August 8, 1983: AIDS activist Bobbi Campbell appears with his partner, Bobby Hilliard, on the cover of Newsweek magazine for the story, “Gay America: Sex, Politics, and the Impact of AIDS.” It is the first time two gay men are pictured embracing one another on the cover of a U.S. mainstream national magazine.
October 1983: the Lesbian Task Force of Southern Westchester NOW and the Gay Men’s Alliance of the Hudson Valley joined forces to create a safe space to meet which they called The LOFT: The Lesbian and Gay Community Services Center.
April 22, 1985: AIDS activist Larry Kramer ’s autobiographical play, The Normal Heart , opens Off-Broadway at the Public Theater. The play covers the impact of the growing AIDS epidemic on the New York gay community between 1981-1984. It highlights the growing rifts between those—like the play’s protagonist, Ned Weeks (Kramer’s alter ego)—who are desperately banging on the doors of government and science in an attempt to stave off the annihilation of gay men, and those who focus instead on building new institutions that will care for the sick and the dying.
October 2, 1985: Rock Hudson dies of AIDS-related illness at age 59. In his will, Hudson leaves $250,000 to help set up the American Foundation for AIDS Research (amfAR). Actress Elizabeth Taylor serves as the organization’s founding National Chairman.
March 12, 1987: AIDS activist Larry Kramer founds the AIDS Coalition to Unleash Power (ACT UP ) in New York City. Kramer’s goal is to create a political direct-action group that will force governments, elected officials, public health agencies, the pharmaceutical and insurance industries, and religious institutions to act to protect those at risk of HIV, and those who are sick with AIDS. TIME Magazine calls ACT UP “the most effective health activist [group] in history ” for “pressuring drug companies, government agencies and other powers that stood in their way to find better treatments for people with AIDS — and, in the process, improving the way drugs are tested and approved in the U.S.”
March 24, 1987: ACT UP stages its first protest on Wall Street. Protestors demand immediate action on a variety of issues, including: having the FDA immediately release potentially life-saving investigational drugs to everyone with AIDS or AIDS-related complex ; immediate abolition of government funded double-blind studies; availability of drugs at affordable prices; a massive public education to stop the spread of AIDS; policy to prohibit discrimination in AIDS treatment, insurance, employment, and housing; and establishment of a coordinated, comprehensive, and compassionate national policy on AIDS.
The Government's Abysmal Response
Perhaps one of the most painful aspects of the HIV/AIDS Epidemic was the lack of care or response from The Reagan Administration. Fueled by overt homophobia, the fact that AIDS was rapidly spreading and killing gay men was not a priority for the administration. The only real action that was happening was with the CDC who kept sounding the alarm but only to have it fall on deaf ears. It wouldn't be until 1985 that President Reagan began to address the travesty of the epidemic and not until 1987 that he would make serious efforts to combat the disease.
September 28, 1982: Rep. Phillip Burton and Rep. Ted Weiss join together to introduce the first legislation to allocate funding for AIDS research. The resolution dies in committee. Congress will not approve the first dedicated funding for AIDS research and treatment until July 1983.
May 18, 1983: The U.S. Congress passes the first bill that includes funding specifically targeted for AIDS research and treatment—$12 million for agencies within the U.S. Department of Health and Human Services.
July 1, 1983: The U.S. Public Health Service opens the National AIDS Hotline to respond to public inquiries about the disease. By July 28, the hotline has to be expanded from three phonelines to eight, because 8,000-10,000 callers are phoning daily.
August 1-2, 1983: The U.S. House of Representatives Subcommittee on Government Operations holds hearings on the federal response to AIDS .
April 23, 1984: U.S. Department of Health and Human Services Secretary Margaret Heckler announces that Dr. Robert Gallo and his colleagues at the National Cancer Institute have found the cause of AIDS , a retrovirus they have labeled HTLV-III. Heckler also announces the development of a diagnostic blood test to identify HTLV-III and expresses hope that a vaccine against AIDS will be produced within two years.
September 17, 1985: President Ronald Reagan mentions AIDS publicly for the first time , calling it “a top priority” and defending his administration against criticisms that funding for AIDS research is inadequate.
October 2, 1985: The U.S. Congress allocates nearly $190 million for AIDS research —an increase of $70 million over the Reagan Administration’s budget request. The House Appropriations Committee also urges President Reagan to appoint an “AIDS czar.”
May 31, 1987: President Reagan makes his first public speech about AIDS .
June 24, 1987 : President Reagan signs an Executive Order creating the first Presidential Commission on AIDS .
Discrimination, Cruelty, and Fear
Fueled by homophobia and fear of the unknown virus, victims of HIV/AIDS experienced discrimination and hatred at all levels. Clinicians were terrified to treat patients for fear of infection and the public response was worse, expressing overt cruelty. Many groups and communities demanded that people living with AIDS be segregated from the rest of society. The stigma of AIDS and HIV was ingrained during this time and its toxic and potent power is still something we are addressing today.
September 30, 1983: After New York City physician Joseph Sonnabendis threatened with eviction from his office building for treating patients with AIDS, the state’s Attorney General and Lamba Legal join together to file the first AIDS discrimination lawsuit
August 27, 1985: Ryan White, an Indiana teenager who contracted AIDS through contaminated blood products used to treat his hemophilia, is refused entry to his middle school . His family’s protracted legal battles to protect Ryan’s right to attend school call national attention to the issue of AIDS, and Ryan chooses to speak out publicly on the need for AIDS education.
December 19, 1985 : A Los Angeles Times poll finds that a majority of Americans favor quarantining people who have AIDS . By year’s end, the United Nations states that at least one HIV case has been reported from each region of the world .[PDF, 49KB].
February 4, 1987: Emmy-award winning pianist Liberace dies at his home in California at age 67. His doctor claims that Liberace died of a heart attack, caused by an underlying brain infection. But the county coroner orders an autopsy, which proves that the entertainer died of AIDS-related illness . The case demonstrates the powerful stigma of AIDS and leads to a national discussion about the rights of people living with AIDS to privacy , both before and after death.
August 5, 1987: A federal judge orders Florida’s DeSoto County School Board to enroll HIV-positive brothers, Ricky, Robert, and Randy Ray. The board had refused to allow the three boys, who have hemophilia, to attend. After the ruling, outraged town residents refuse to allow their children to attend school, and someone sets fire to the Ray house on August 28, destroying it .
May 15, 1987: The U.S. Public Health Service adds HIV as a “dangerous contagious disease” to its immigration exclusion list and mandates testing for all visa applicants. The HIV ban will not be lifted until January 4, 2010.
March 3, 1988: Ryan White, the Indiana teenager who has become a national spokesperson for AIDS education, testifies about the stigma he has endured as a result of having AIDS before the President’s Commission on AIDS.
Compassion, Empathy, and Awareness
While fear and homophobia played devastating roles in the epidemic, it was compassion, empathy, and awareness that would ultimately work to turn the tide and shift attitudes. The images of Princess Diana visiting patients with AIDS in hospitals, holding their hands, and hugging them are largely viewed as the tipping point of when callous fear gave way to empathy. The "Diana Effect" would inspire other influential celebrities and dignitaries like First Lady Barbara Bush, Elizabeth Taylor, Madonna, Oprah Winfrey, and Sharon Stone to use their star power to shatter the stigma.
January 1, 1983: Ward 86 , the world’s first dedicated outpatient AIDS clinic, opens at San Francisco General Hospital. The clinic is a collaboration between the hospital and the University of California, San Francisco, and it draws staff who are passionate about treating people with AIDS. Over time, the staff develop the San Francisco Model of Care , which emphasizes: treating patients with compassion and respect; providing an array of health and social services in one facility; and collaborating closely with the local health department and community organizations. The model eventually becomes the global gold standard for HIV patient care.
July 25, 1983: After a petition by psychiatric nurse Cliff Morrison, San Francisco General Hospital opens Ward 5B , the first dedicated in-patient AIDS ward in the U.S. Within days, its 12 beds are fully occupied. The ward is run by Morrison and an all-volunteer staff—from nurses to janitors—who offer compassionate, holistic care for AIDS patients.
July 25, 1985: Actor Rock Hudson , who played leading roles in over 60 Hollywood films, announces he has AIDS —the first major U.S. public figure to do so. His acknowledgment marks a turning point in public perceptions about the epidemic, and AIDS stories in the major print media more than triple in the next six months.
February 1987, AIDS activist Cleve Jones creates the first panel of the AIDS Memorial Quilt to honor his friend Marvin Feldman , who died on October 10, 1986 of AIDS-related illness at age 33. The quilt panels are 3 feet wide by 6 feet long—the size and shape of a typical grave plot.
April 19, 1987: Princess Diana makes international headlines when she is photographed shaking the hand of an HIV-positive patient in a London hospital . She goes on to become a passionate advocate for people living with HIV and to speak forcefully against HIV/AIDS-related stigma and discrimination.
1991 The Visual AIDS Artists Caucus launches the Red Ribbon Project to create a visual symbol to demonstrate compassion for people living with AIDS and their caregivers. The red ribbon becomes the international symbol of AIDS awareness.
1993 The film “Philadelphia” starring Tom Hanks as a lawyer with AIDS, opens in theaters. Based on a true story, it is the first major Hollywood film on AIDS.
HIV/AIDS and Black and Brown Communities
The lack of healthcare equality and equity for communities of color has always played a pernicious role in systemic racism in the United States. So, when HIV/AIDS was spreading rapidly and unabated in the early 1980s due to the Reagan Administration's poor handling of the epidemic, it was only a matter of time before it would affect communities of color who also experienced profound levels of apathy from the government. Activists, artists, and community leaders mobilized demanding attention and resources to address the pathways in which AIDS was infecting African Americans and later Latinx Communities. Basketball legend Earvin "Magic" Johnson's disclosure of being HIV positive is considered a major turning point in shifting attitudes within Black and Brown communities. His disclosure began a community dialogue of openly talking about living with HIV.
July 18, 1986: At the National Conference on AIDS in the Black Community in Washington, DC, a group of minority leaders meets with the U.S. Surgeon General, Dr. C. Everett Koop, to discuss concerns about HIV/AIDS in communities of color. This meeting marks the unofficial founding of the National Minority AIDS Council .
October 24, 1986: CDC reports that AIDS cases are disproportionately affecting African Americans and Latinos. This is particularly true for African American and Latinx children, who make up 90% of perinatally acquired AIDS cases.
November, 1987: Debra Fraser-Howze , director of teenage services at the Urban League of New York, founds the National Black Leadership Commission on AIDS . The organization works to educate, mobilize, and empower black leaders to meet the challenge of fighting HIV/AIDS and other health disparities in their local communities.
December 27, 1988: Gay rights activist and writer Joseph Beam dies of an AIDS-related illness three days before his 34th birthday . He is best known for editing In the Life, the first collection of writings by gay black men on the impact HIV/AIDS is having on their community. Today In the Life is widely regarded as a literary and cultural milestone in gay literature
November 7, 1991, American basketball star Earvin “Magic” Johnson announces that he is HIV-positive.
1994 Pedro Zamora, a young gay man living with HIV, appears on the cast of MTV’s popular show, “The Real World.” He dies on November 11 at age 22.
Are you someone living with HIV or AIDS and need support? Join The LOFT's One Voice: A virtual support group for those impacted or living with HIV
LEARN MORE | Resources:
- A Timeline of HIV and AIDS
- Homepage | HIV.gov
- GMHC- A History
- HIV's Impact on The African American Community
- HIV in Latinx Communities
- The BODY: HIV/AIDS Resource