The Monthly Climb October - LGBTQ+ History Month: The AIDs Crisis
Updated: Nov 10, 2022
In the 1980s and early 1990s, the outbreak of HIV and AIDS swept across the United States. Pneumocystis Pneumonia made headlines in the CDC’s article in its Morbidity and Mortality weekly report. The article describes cases of a rare lung infection in previously healthy gay men in LA: “In the period October 1980-May 1981, 5 young men, all active homosexuals, were treated for biopsy-confirmed Pneumocystis carinii” This was the first official reporting of what will be known as the AIDS epidemic.
Acquired Immunodeficiency Syndrome, or AIDS, is caused by the presence of a Human Immunodeficiency Virus (HIV) which inhibits someone’s ability to fight infections. Its symptoms include weight loss, fever, fatigue, and recurrent infections. It is spread by sexual contact, has no cure, and is typically fatal.
After the report’s publication, health officials noticed a spike in cases of Kaposi’s sarcoma in gay men and more and more reports of gay men contracting similar infections emerged. Health officials were alarmed by the outbreaks of PCP and KS, both rare and deadly diseases associated with immune suppression. In response to these reports, the CDC established a task force on KS/OI to identify risk factors and began national surveillance of new cases in the summer of 1981. Cases began appearing in heterosexual injection drug users, newborns, and hemophilia patients, confirming that HIV can be transmitted through blood supply.
The term “AIDS” was first used by the CDC on September 24, 1982, though the disease was widely referred to as “gay cancer,” “gay plague,” and “homosexual syndrome” for many years. Over the next several years the CDC issued new guidelines, launched its first AIDS-related PSA “America Responds to AIDS,” and 107 million copies of the brochure “Understanding AIDS'' was sent to every household in the US.
By 1992, AIDS became the number one cause of death for US men ages 25-44 and there were an estimated 8-10 million individuals living with HIV. The red ribbon became the international symbol of AIDS awareness, World AIDS day is declared, and the ADA prohibited discrimination against individuals with disabilities, including people living with HIV and AIDS.
In the late 1990’s, the worldwide impact of AIDS decreased as Antiretroviral Therapy (ART) was introduced. Although this doesn’t cure AIDS, it reduces the chances of getting an infection and limits the likelihood of transmitting the disease to other people. Although the cost of ART and other anti-HIV medication were expensive, the rise of unbranded generic drugs reduced the cost, making it more accessible to low-income, AIDS-positive people.
Today, approximately 1.2 million people in the US are infected with the virus that causes AIDS, accounting for about 0.05% of the population. Research organizations, philanthropies, and governmental organizations continue to fund research programs to decrease the number of cases, improve the quality of life for patients, and search for a vaccine.
There was great stigma around the AIDS crisis, the disease was highly feared and there were negative attitudes, behaviors, and judgment towards people living with or at risk for contracting AIDS. Doctors were afraid to touch and treat patients, and hospitals filled up with young men who were often abandoned by their families. Because of this fear it wasn't until the mid to late 80s where the AIDS crisis finally began to pop up in music, TV shows, and movies. Unfortunately, at the time many of the artists who discussed the topic were underground bands or directors of fringe movies. The first pop song that openly dealt with the danger of AIDS was “Pretty Girls and Pretty Boys” by Book of Love. This song discussed the dangers of sex at the time and has imagery calling for a cure, we highly recommend listening and watching the music video. Songs that hinted at the AIDS crisis were “No Sex” by Alex Chilton and “Sign o’ the Times” by Prince. An icon of the time Lou Reed released the song “Halloween Parade” in 1989 which talks about the effects of the AIDS crisis in New York.
Films on the topic were far and few to come by; the film “Longtime Companion” by Norman Rene, a prominent box-office film about AIDS was made in the 1980s, but it didn't officially reach widespread movie theater distribution until 1990. When the disease was represented on TV it was often in one-off episodes of early 80s shows, often medical dramas. In 1985 a TV movie called “An Early Frost” featured a character who had AIDS, and it is widely considered the first film of any kind to deal with the AIDS epidemic.
Areas of media like Broadway and Hollywood were hit with the consequences of the AIDS epidemic. Broadway has a long history of employing gay playwrighs, actors and many others so the AIDS crisis was felt all through the Broadway scene. The play “The Normal Heart” by Larry Kramer reached a fairly broad audience. “The Normal Heart” is based on Kramers experience in the earliest days of the AIDS epidemic and was later made into a movie in 2014. For Hollywood, the popular and successful actor Rock Hudson announced that he was dying of AIDS, this rocked the nation as he was seen as the nation's heartthrob. Elizabeth Taylor, Hudsons predominant co-star, started fundraising efforts for AIDS research with a 1985 benefit dinner for Hudson. This dinner later established the American Foundation for AIDs research.
When you look back at how pop culture dealt with the topic of AIDS as it was dominating the country, it is very important to see what it has become today. Representation has been very hard to come by and there is still so much room to grow to depict the events of the AIDS crisis better. Some important pop culture moments that are more recent are representation of AIDS/HIV in the media by Billy Porter, Johnathan Van Ness and TV shows like ‘POSE’ and ‘It’s A Sin’.
Recently, a federal judge in Texas ruled that the Affordable Care Act’s mandate for free coverage of HIV prevention drugs violates the religious freedom of a Christian-owned company. The challenge was over the pharmaceutical company Gilead’s Truvada and Descovy which are pre-exposure prophylactic drugs, commonly called PrEP. PrEP drugs are for use by people who are at risk of getting HIV through sex or injection drug use, and some transgender individuals. These life-saving drugs are taken daily by hundreds of thousands of Americans to prevent the infection of HIV and their creation was a significant turning point in the AIDS epidemic. Drugs like these were vital to making HIV not a death sentence. The suit argues that mandatory PrEP coverage forces Christians to encourage “homosexual behavior” even though an estimated 1.2 million Americans are at risk of contracting HIV, and less than 25% of this populations takes PrEP, often because they can not afford it.
Coverage of this drug is already disproportionate so having free access to PrEP is important to protect at risk populations. This decision is rooted in discrimination and is dangerous for those who are at risk. AIDS has killed many and America has historically inadequately responded to the prevalence of HIV and AIDS. The ACA expanded access to PrEP and other preventative health services through requirement of coverage and has led to a significant decrease in the number of new HIV infections. The ruling is a win for conservatives who support the Religious Freedom Restoration Act, a 1993 law that has been used to challenge access to things like abortion and contraception and to block equal protection for the LGBTQ+ community. “This ruling is about imposing extreme religious beliefs -- not, as it purports, about protecting religious freedom,” said Ivy Hill, community health program director of the Campaign for Southern Equality. The Texas ruling will increase the number of people who can’t afford PrEP because they lose employee coverage, and therefore be at a higher risk of getting HIV. While there are other legitimate protection options, PrEP provides the best, nearly perfect protection. Due to this ruling in Texas, at-risk populations will continue to become infected with HIV, perpetuating this ongoing epidemic in our society.
Destigmatization: Educating a Nation
In the 80s, HIV/Aids terrified the world due to a lack of understanding as well as stigma regarding those with the illness. Jonathan Mann, former head of the World Health Organization's (WHO's) Global Program on Acquired Immunodeficiency Syndrome (AIDS), identified stigma as the “third epidemic,” following the accelerating spread of HIV infection and the visible rise in AIDS cases. He recognized that stigma, discrimination, blame, and denial are potentially the most difficult aspects of HIV/AIDS to address, yet addressing them is key to preventing HIV transmission and mitigating the impacts of the disease on individuals, families, and communities.
In April 1987, Princess Diana opened the UK's first purpose built HIV/Aids unit that exclusively cared for patients infected with the virus, at London Middlesex Hospital. In front of the world media, Princess Diana, bare handed, shook the hand of a man diagnosed with HIV/Aids. This simple gesture publicly challenged the misinformed notion that HIV/Aids was transmitted by touch.
Studies have shown significant associations between HIV-related stigma and less use of voluntary counseling and testing, less willingness to disclose test results, and incorrect knowledge about transmission. Stigma occurs at multiple levels, including the interpersonal, institutional (e.g., health facilities, schools, and workplaces), community, and legislative levels. Manifestations of stigma take many forms, including isolation, ridicule, physical and verbal abuse, and denial of services and employment. Experiences of stigma can differ by sex, reflecting broader gender inequalities. For example, women may be more likely to be blamed for bringing HIV into the household than men. HIV-related stigma reinforces existing stigmas against marginalized groups (e.g., men who have sex with men [MSM], sex workers, and injection drug users)—often called “compounded” stigma. Common stigma-reduction interventions have focused mainly on creating changes in individual knowledge, attitudes, and behaviors rather than broader social and environmental change.
Four key dimensions of stigma have been identified: Inappropriate fear of contagion: attitudes that reflect fear of contagion and HIV transmission from casual contact with people living with HIV. Negative judgments about people living with HIV: attitudes that reflect blame, shame, and casting moral judgments on HIV-infected people. Enacted stigma or discrimination: both interpersonal forms of discrimination (e.g., isolating or teasing people living with HIV) and institutional forms of discrimination (e.g., being fired from work or denied health care because of HIV). Compounded stigma: perceptions of the association between HIV and certain (usually marginalized) groups, such as sex workers
Certain medical conditions are stigmatized more often than others; some conditions are seen as moral issues or character flaws, instead of the biological diseases they are. A stereotype that people living with HIV are more sexually active than others and the myth that having sex with a person living with HIV automatically means that they will acquire HIV (the truth is that there is no risk at all of HIV transmission through sex when the person living with HIV is taking HIV drugs and has an undetectable viral load. Undetectable means untransmittable for HIV! Other examples include leprosy, mental health, and substance use. People with leprosy are called lepers; people with mental health conditions are called "crazy"; people who use mind-altering substances are called addicts or junkies. Reducing people to a label dismisses their humanity and sets them apart from others. One way to address stigma is to use people-first language. We never hear "cancerous people" or "I am cancer positive"; but we often hear people say "HIV-positive women" or "HIV-positive pregnant women." This describes the person as the illness, rather than a person who happens to have the illness. In contrast, people-first language describes people living with HIV as human and valuable. It shows respect and compassion. People-first language puts the person before the illness or label and describes who they are, not what they have been diagnosed with. People-first language helps eliminate prejudice and removes value judgments. When we describe people by labels or medical diagnoses, we devalue and disrespect them as individuals. People-first language respects people for who they are. The likely rapid expansion of male circumcision programs may also have implications for stigma; therefore, diagnostic and intervention research is necessary to ensure that men are able to make an informed choice about the procedure without fear of being stigmatized for their circumcision status. Finally, while measures of stigma and discrimination have been validated in specific local contexts, ongoing research is important to assess the validity and reliability of the measures across settings. In conclusion, HIV-related stigma and discrimination remain key challenges to successful implementation of a host of HIV services and programs.