By: William Reid, an Environmental Science and Theatre major.
The following work was created for ENV 294: Special Topics: Disease Ecology.
Brief description: This piece details the HIV epidemic in the late 20th century and the various stigmas that the LGBTQ+ community faced during it, specifically gay and trans individuals. As a queer individual, I am honored my work on such an important topic is being included.
Disease outbreaks, and the crises they create for humanity, including the current global COVID-19 pandemic, often cause humans to develop negative emotions targeted towards the perceived source of the disease. One of the more, if not the most, disruptive diseases in the last century was the United States outbreak of the human immunodeficiency virus (HIV). Scientists believe that the virus was first transmitted to humans at some point in the first half of the 20th century through a subspecies of chimpanzees who were infected with simian immunodeficiency virus (SIV) (Korber, 2000). The first scientific finding of HIV-1, the strain responsible for the outbreak among humans, was retroactively isolated from the blood samples of an African man who died in 1959 (Zhu et al., 1998).
Although HIV-1 originated and was first documented in Africa, the disease spread and was eventually introduced to the United States. The first known case occurring in the United States was retroactively found in 16-year-old Robert Rayford, in 1966, who died in 1969 (Garry, 1988). It was theorized by the healthcare practitioners that treated him that Rayford had contracted the disease through anal sex as a form of prostitution or sexual abuse (Crewdson, 1987). However, the leading theory concerning the U.S. outbreak of HIV dates to 1969 (Bowdler, 2007). HIV is theorized to hail from the Democratic Republic of the Congo, and it is believed that an individual(s) brought it to Haiti, where a small outbreak occurred (Bowdler, 2007). After this, another individual(s) transported HIV from Haiti to the United States (Bowdler, 2007). At some point, the disease made its way to New York City which quickly became the epicenter of the pandemic. This was largely due to the high number of gay and trans individuals in the area among whom the disease was more easily spread.
HIV contains two copies of a ribonucleic acid (RNA) molecule which synthesizes itself into a DNA copy (Meyer & Adler, 2019). This copy then assimilates with other strands of DNA inside of a chromosome (Meyer & Adler, 2019). Once a part of the chromosome, the copy essentially serves as a template for further replication, thereby classifying HIV as a retrovirus (Meyer & Adler, 2019). As previously mentioned, the number one host for HIV-1 is humans, and human to human contact through bodily fluid is the most frequent mode of transmission (Meyer & Adler, 2019). Fluids which serve as transmitters include semen, vaginal fluid, blood, and breast milk (Meyer & Adler, 2019). These fluids can be passed through sexual intercourse, sharing of needles and from mother-to-child during childbirth or breastfeeding, with the former being the most frequent (Meyer & Adler, 2019).
While the virulence of each strain is known to vary widely due to the differences in viral loads, one study found that, with HIV-1, the rate of onset to AIDS correlated with variants that had a higher rate of cell destruction (Bertels et al., 2018; Cheng-Mayer et al., 1998). The virus is also unique for its long period of dormancy. Symptoms of infection do not typically manifest until years later (Meyer & Adler, 2019). It initially presents itself as flu-like with symptoms ranging from fever, exhaustion, sweating, chills, sore throat, and so on (Meyer & Adler, 2019). After the initial onset, symptoms begin to decrease while the person enters a chronic stage of infection (Meyer & Adler, 2019). It is in this stage, if left untreated, that the disease can manifest itself into acquired immune deficiency syndrome (AIDS), which greatly weakens the immune system, leading to skin blotchiness, severe weight loss, sores, and various other diseases, including cancer (Meyer & Adler, 2019). Thus, while an AIDS diagnosis is almost always fatal, it is not actually AIDS that causes the death but rather complications that arise from the weakened immune system.
While anyone partaking in sexual intercourse has a risk of contracting HIV, men who have sex with men have a higher potential for contracting this disease. This is because men who have sex with men engage in anal sex more frequently than other populations (CDC, 2020a). In anal sex, the mucous membranes lining the anal cavity are very thin and susceptible to infection (CDC, 2020a). The receiving partner is therefore at thirteen times more risk to contract the disease than the inserting partner (CDC, 2020a). Furthermore, continued societal homophobia dissuades these men from seeking out testing and professional help (CDC, 2020a). Overall, African American men are statistically shown to experience HIV the most (CDC, 2020b). Making up 13% of the United States’ population, African American men are also estimated to account for 43% of new infections (CDC, 2020b). The leading cause of this discrepancy is believed to be due to the racial disparity in the States (CDC, 2020b). The poverty rate is staggeringly high for Black people which often leads to poorer quality health care, housing, and education, all of which are shown to increase the likelihood of HIV transmission (CDC, 2020b). In an effort to combat this disparity, the Ryan White Care Act was enacted in 1990 to provide funding for under privileged individuals, and their families, who were infected with HIV (HIV/AIDS Bureau, 2020).
Much like other disease outbreaks, the perception of minority groups was negatively affected by the outbreak of HIV-1. Societal reactions to HIV tend to be incredibly targeted and hateful. In fact, the social stigmas that people faced during the initial outbreak soon became its own epidemic. As mentioned, men who have sex with men are the most susceptible group to the infection, and although the disease did not originate within this demographic, society began to bastardize them as the source of HIV. Many devout religious groups began framing the gay related immune deficiency syndrome (GRIDS), as it was known back then, as the divine judgement of God (Faithful Word Baptist Church, 2014). Even after the name change to HIV/AIDS and a medical denouncement of it only affecting men who have sex with men, many groups continued to tout that this epidemic was started by the “abominations” committed by homosexuals (Faithful Word Baptist Church, 2014).
However, another group affected at the time is often overlooked. Numerous trans women were also affected during the initial outbreak. A study published in Israel concluded that, because of higher frequencies of anal sex occurring with transgender women prostitutes, these transgender women were found to be more at risk of infection than cisgender women prostitutes who engaged in vaginal sex (Modan et al., 1992). However, little further research exists on their community in this timeframe because of the stigma and frequent misgendering these women faced.
It cannot be understated that individuals who did not identify as part of the gay/trans community also faced their own share of stigma which has been most often attributed to the misinformation being spread at the time. The most notable example of such a case is Ryan White (who the previously mentioned act was named after). Born a hemophiliac in Kokomo, Indiana, White would receive weekly infusions of a blood product (Resnik, 1999). During one such infusion it is believed that White, along with 90% of other hemophiliacs being treated with a similar product, contracted HIV (Resnik, 1999). It is important to note that the 13-year-old boy was only ever diagnosed with AIDS after undergoing a lung biopsy during a strong bout of pneumonia (Resnik, 1999). For about six months, the time doctors believed he would have left to live, White remained too ill to return to school (Specter, 1985). Upon feeling better, his mother submitted a formal letter asking to let her son return to school but was denied by the local superintendent which fueled an appeal process lasting for over a year (Specter, 1985). As the process dragged on and expanded up to the state court, social anxiety and unrest began occurring among Kokomo civilians. They feared that the boy could transmit the disease through any type of contact with their children, despite the denial of such claims from governmental health sources, and they soon began organizing protests to bar the child from readmission (Specter, 1985). While eventually able to reattend school, White and his family continued to face verbal and even physical threats (White & Cunningham, 1992). These continued to persist to the point where, the next school year, White and his family moved to Cicero, Indiana, where an educated group of staff and students greeted him with a warm welcome (Richardson, 1986).
One of the major turning points away from HIV stigmatization was the onset of celebrity disclosures. The first shift was seen when, also in 1985, American heartthrob and beloved actor Rock Hudson announced his AIDS diagnosis (Bobinski, 1991). Long known in the industry to be homosexual, Hudson’s announcement as a charismatic public figure radically shifted notions of the disease (Bobinski, 1991). Further strides were made when Freddie Mercury, days before his death from AIDS, announced his diagnosis in 1991 (Lammers & Wijnbergen, 2008). The Freddie Mercury Tribute Concert for AIDS Awareness was organized shortly afterward. Earvin “Magic” Johnson, basketball player for the Los Angeles Lakers, also showed the disease’s range outside of the queer community when he announced his sudden retirement from professional basketball after being diagnosed with HIV (NBA.com, 2018).
Thankfully, society is rife with pop culture which helps to enlighten people about HIV and the stigmas people faced. In Disney’s 1991 animated classic Beauty and the Beast, one of the most unknown but poignant moments lies in the penultimate musical number of the film. Lyricist Howard Ashman was dying of AIDS during the film’s production and took the movie as an opportunity to showcase the stigmatization he and his community were facing (Robinson, 2017). “The Mob Song,” sung by the villainous Gaston, contains lyrics such as “We don’t like what we don’t understand/In fact it scares us and this monster is mysterious at least” (Ashman and Menken, 1991, Track 8). A more recent fictional portrayal of AIDS is the currently running hit FX show, Pose. Created by Ryan Murphy, the series begins in the 1980s with Blanca, a transgender woman, and the main character, contracting HIV (Murphy, 2017). Throughout the series, several other characters contract HIV/AIDS and some ultimately perish. The tale of these individuals is told through the lens of the underground LGBTQ+ ballroom community in NYC at the time (Murphy, 2017). The second season moves the portrayal of HIV/AIDS to the forefront even more by showcasing the real-life AIDS activist group ACT UP and the fight the group faces to not only live happily but to educate others about the importance of safe sex and the lies being spread about the disease (Murphy, 2017).
While awareness and advocacy are undeniably integral to stopping any epidemic, preventive measures must also be taken. The CDC has been the largest educator on the topic since the disease’s inception with public posters being their main form of communication (Strudwick, 2015). Their most modern movement is called “Let’s Stop HIV Together” and focuses largely on eliminating the stigmas by producing thoughtful and educated conversations (CDC, 2020c). They state that the biggest difference is made when individuals continually practice safe sex. This includes being screened regularly for sexually transmitted diseases (STDs) and the use of condoms which have an 80% or higher protective rate against HIV infection (Kahn & Walker, 1998; World Health Organization, 2014). Lowering the number of sexual partners, one interacts with and open communication with sexual partners are also known to lower the rate of individual infection (CDC, 2019a). PrEP is an effective drug in helping those who are HIV free from contracting the disease. The most common form of PrEP, and one of the two recommended by the World Health Organization (WHO) other than Cimudo, is Truvada (World Health Organization, 2017). When any form of PrEP is used as directed, the risk of acquiring HIV is reduced up to 99% (CDC, 2019b). Abstinence is the best choice as it eliminates all risk of contraction, but it is incredibly unrealistic in achievement. For those who are infected with HIV, antiretroviral therapy (ART) is a daily medication that reduces viral load in an individual (CDC, 2019b). At the initial disease outbreak, azidothymidine (AZT) was the most common version, but often plagued users with severe side effects including weight loss, nausea, and skin discoloration (MedicineNet, 2014). Overtime, the effectiveness of these drugs has increased to the point in which a person can classify as “undetectable” and have up to a 100% risk free transmission (CDC, 2019b).
While society now understands how HIV can be contracted, stigmas still exist against those who are HIV-positive, especially those who are labeled as “undetectable.”. In place of logic and reason, people begin to blame, criticize, and eventually harass specific groups to justify what is happening. However, this only allows hatred to fester even further, and to truly break this cycle, a general sense of understanding and empathy must find its way into this world. These stories are being told, especially in art, and this allows for that increase in empathy. Through this, the stigma can be reduced. Safe-sex education also needs to be occurring, especially in impoverished areas where these high rates of infection continue to occur. Lastly, those infected with HIV need allies to speak up and support them. Once contracted, the disease is manageable, but it is still an ever-present burden on that person’s mind, body, and soul. While of course there will always be naysayers or those who simply live to make others miserable, public opinion and education can change. It just takes a few small, individual steps first.
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William Reid ’21 is a Taurus through and through. His stubbornness and determination have led him to purse a double major in Theatre and Environmental Science. When not talking someone’s ear off about these passions, he takes part in productions with both the Theatre & Dance and Music departments, performs as a percussionist, and serves as Showcase Coordinator for Musicians’ Union. He previously served as Honor Board chair where he effectively represented the Judicial Branch of the SGA. When not busy with school, he can be found bingeing anime and soapy dramas or reading various manga and comics or fantasy and horror novels. After graduating, Will will be working part-time at the Philadelphia Zoo with his one true love, penguins, and auditioning in the city on his days off in hopes to continue telling stories on stage and in film.