“I went through a social death. I stayed in a back room a lot of the time at my sister’s apartment. I pretty much laid around and just wished I could hurry up and die. I had nowhere to go. People looked at me, followed me around, screamed at me and pointed.”

This was the reality Mike Sisco, who shared his story on a 1987 episode of the “Oprah Winfrey Show,” and many others had to face at the time when it came to their HIV/AIDS diagnosis.

Since the beginning of the HIV/AIDS epidemic, about 40 million people have died from AIDS and AIDS-related illnesses, according to the World Health Organization. When AIDS cases were first reported in the U.S. in June 1981, the media largely placed the spotlight on the death toll and misinformation-fueled hysteria rather than on the public-health aspect of the crisis, according to a 2004 study from the Kaiser Family Foundation.

Over time, media has evolved from early depictions that white-washed the epidemic disproportionately affecting people of color, journalist Naveen Kumar reported in 2021 for Them, to fuller, more nuanced depictions of today on shows such as Pose and It’s a Sin. Nevertheless, educators and entertainment industry experts believe that there is more work to be done.

‘Scared and prejudiced’

One of the first prime-time television depictions of HIV/AIDS was a 1983 episode of the medical drama St. Elsewhere. Set in Boston’s fictional St. Eligius Hospital, the episode “AIDS and Comfort,” broke down facts and confronted misconceptions through the show’s on-screen medical professionals. They also used the central character, who was affected by AIDS, to inspire a call to action for better public education and compassion.

Not every program followed the St. Elsewhere approach, however.

Damien Ridge, a professor at the University of Westminster, first encountered an on-screen discussion of HIV/AIDS in an 1983 episode of “60 Minutes Australia.”

“It was definitely very negative and helped create a sense of those communities, where people were affected by HIV, as frightening, and ‘other’ to the so-called general community,” Ridge said of the program.

Playwright and educator Jacob Juntunen recalls watching the 1987 HIV/AIDS episode of Oprah, around age 12.

“On the one hand, Oprah treated the person with HIV/AIDS compassionately, but the audience did not. So it was positive in the sense that it was on a mainstream program and the host took it seriously, but negative in the sense that the ‘normal folks’ in the audience seemed extremely scared and prejudiced,” Juntunen said.

This negative framing of the HIV/AIDS crisis of the 1980s reflected many people’s attitudes about the virus and those suffering from it, according to Archer Magazine writer Vicky Wilson. Notably, President Ronald Reagan, who held office from 1981 to 1989, refused to acknowledge those impacted by the epidemic until 1985. This was four years after the first cases were reported. By the end of that year, over 12,000 Americans had died, including Reagan’s close friend Rock Hudson.

Polls conducted by Gallup in the 1980s also offered insight into how the public overall felt about the epidemic and how much education was still needed. For example, 28% of Americans in a 1985 poll said that “they or someone they knew had avoided places where homosexuals might be present as a precaution to avoid contracting AIDS — and this number grew to 44% by 1986.”

Two separate polls in 1987 also found that of Americans polled, 51% agreed “that it was people’s own fault if they got AIDS” and that 46% said “that most people with AIDS had only themselves to blame.”

Christian groups echoed this sentiment as well, according to Wilson. They saw the HIV/AIDS epidemic as a “‘punishment from God’ for homosexuality, promiscuity and drug use,” Wilson said.

Later, stories emerged that impacted people’s perceptions of HIV/AIDS, such as Ryan White. He was only 13 years old when he was diagnosed with AIDS after receiving a blood transfusion. Given only six months to live, White faced discrimination from his community in Kokomo, Ind. and had to fight to attend his school. The court case that followed and White’s perseverance in making people aware of what’s accurate about HIV/AIDS gave him national attention. After passing away in 1990, Congress passed the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act to help provide and improve the treatment of HIV/AIDS for low-income people.

Rev. Ray Probasco, a family friend who eulogized White, said at his 1990 funeral, according to Time, that “not much was known about the disease back then. So very quickly a great deal of fear permeated Ryan’s community. At first, Ryan and the disease were perceived as one and the same. In time, we saw the boy and the disease, and they were not the same. It was Ryan who first humanized the disease called AIDS. He allowed us to see the boy who just wanted, more than anything else, to be like other children and to be able to go to school.”

Media panic and whitewashing

Juntunen said the media had a deep impact on people’s perceptions of the epidemic.

“HIV/AIDS was simply a disease, but it was routinely referred to as ‘the gay plague’ in the early years in all sorts of media: TV, newspapers. Calling HIV/AIDS ‘the gay plague’ created the frame through which the public, politicians, and doctors all saw the disease,” Juntunen said.

Ridge believes the media at the time stirred up a sense of moral panic.

“I think medical correspondents were generally much more balanced than other journalists. And Hollywood eventually tried to address homophobia and stigma, but that was 12 years after the first media HIV reports, with the film Philadelphia. They needed a highly acceptable star, Tom Hanks, to play the gay lawyer fired for living with HIV, given the stigma, homophobia and general panic that had previously been whipped up by the media,” Ridge said.

Tom Hanks’ role as attorney Andrew Beckett in the 1993 film is just one example of how the media and Hollywood white-washed the epidemic, according to Kumar.

As Kumar reported, the typical victim of HIV/AIDS in early programming about the topic was a clean-cut white man with a respectable job from a good background. However, people of color were disproportionately impacted by the epidemic since it first started, according to the U.S. Centers for Disease Control and Prevention.

A report from the The U.S. Department of Health and Human Services’ Office of Minority Health, for example, found that “although Black/African Americans represent almost 13 percent of the U.S. population, they account for 42.1 percent of HIV infection cases in 2019″ and “that in 2020, African Americans were 7.8 times more likely to be diagnosed with HIV infection, as compared to the white population.”

“The musical Rent has its joyful moments but at the end, most of the folks who lived with HIV died off. And they are people of color. It’s just harder for the mainstream I think to relate to a BIPOC issue, an issue of poverty or drug addiction,” civil rights leader and activist Cecilia Chung said.

Despite how it started, how the media talks about HIV/AIDS is changing, as seen with breakthrough television such as the Max miniseries It’s a Sin. Set in early 1980s London, the show not only provides a painful reminiscence for those that lived through that time period, but an education to a newer generation of queer people to understand the significance of that era, according to writer Patrick Kelleher in a 2021 PinkNews article on the series.

Leave no one behind

As entertainment has changed since the 1980s, HIV/AIDS is now often a plot or character point instead of a whole storyline, according to Juntunen.

“I think this normalization is better for HIV+ folks because it reduces the fear and stigma surrounding the disease that is clearly on display…I suppose [the evolution of entertainment when it comes to HIV/AIDS] might be ‘worse’ because it doesn’t tend to have the educational aspects about the disease that earlier work did, and often my undergraduate students — even the queer ones — don’t have a sense of that recent history,” Juntunen said.

On the other hand though, greater social acceptance now makes it harder for the media to be blatantly homophobic or perpetuate HIV stigma, Ridge said.

“The flip side of making gay men with HIV a media target was that they also got interviewed, leading to positive media exposure: they were not monsters as everyone had been told,” Ridge said, using Princess Diana as an example of another way public opinion changed.

Even though the emergence of TV programs like When We Rise and Pose are reclaiming the story of HIV/AIDS to be truly diverse and inclusive, time will tell if more positive representation comes. Nevertheless, today’s media are providing first steps for those to learn more about the past, present and future of HIV/AIDS and release unnecessary stigma.

“The entertainment and media industries need to tell people that HIV has changed. Those on effective treatment cannot pass on HIV during sex. These days, people diagnosed with HIV usually have similar health and life expectancy to other people. There are certain groups where stigma is still way too high. In the UK, this includes Black African immigrants, Black men who have sex with men, and trans people for example. We need to ensure that we do not leave behind anyone when it comes to tackling stigma and ending HIV,” Ridge said.