When it comes to HIV and AIDS, the screen has gone blank

Scripted TV shows, which used to portray the human face of the epidemic, are ignoring the toll it continues to take on marginalized communities.

In the hospital, Pray Tell (Billy Porter) comforts his boyfriend Costas Perez (Johnny Sibilly), who has AIDS. “They’ll never know that feeling, what it’s like to love without worrying that you’re going to die, or worse yet that you’re going to kill somebody,” Pray Tell says here in the sixth episode of season one. He is referring to the youngest members of drag ball culture, who are now coming of age at the height of the epidemic. Two episodes prior, Pray Tell found out that he himself has HIV. (Courtesy of FX via YouTube)

By Isabel Ruehl

Television viewers first meet Blanca Rodriguez sitting alone at the end of a long fluorescent hallway. Legs crossed, she positions herself upright in the waiting-room chair, wrists on armrests so that her posture is perfect. When a door opens, Blanca looks down and takes a deep breath. A man walks out and stumbles just a few steps before collapsing, sobbing, next to his partner. He and Blanca lock eyes, her narrow face gaunt with fear.

“Blanca,” a doctor calls. It’s her turn to enter the clinic.

The year depicted is 1987, and here, in the pilot episode of FX’s “Pose” from 2018, Blanca, a trans woman of color, finds out that her test has come back positive: She is infected with HIV. The physician tells her about a new drug called AZT and the St. Vincent’s hospital in Greenwich Village and concludes, bleakly, “This doesn’t have to be a death sentence.”

 “Isn’t it, though?” Blanca cuts in. At the time, HIV essentially guaranteed AIDS, a disease with a 100% mortality rate. Her eyes fill with tears. 

Co-created by Ryan Murphy, Brad Falchuk and Steven Canals, “Pose” explores the underground culture of drag balls in New York City during the late 1980s and early 1990s, a story whose only real precedent on screen was the 1990 documentary “Paris Is Burning.” Hailed as a fresh “space-claiming project” by the New York Times chief television critic James Poniewozik, “Pose” was an instant hit, averaging 645,000 weekly viewers. It featured the largest-ever cast of trans actors for a scripted series and ran for three seasons, racking up an Emmy, Peabody and several Gay and Lesbian Alliance Against Defamation (GLAAD) awards.

The representation achieved at all levels — among producers, writers, actors, hair, makeup and costume — is arguably the show’s most impressive feat. A greater diversity of writers and producers brings different perspectives to a story, Poniewozik explained, while greater diversity of characters means that each viewer is exposed to more experiences — sometimes ones they never knew existed. 

But in many ways, “Pose” also represents a false high. In its 2020-2021 “Where We Are on TV” report, the advocacy organization GLAAD  found a “concerning and significant drop” in HIV-positive characters on broadcast, cable and the streaming services (Amazon, Hulu and Netflix) that they track, from six the year before to just three this year — all of them on “Pose.” This is a record-low in the 16 years that GLAAD has kept count. Moreover, the “Pose” series finale aired six months ago. Today, there are zero characters on U.S. scripted television living with HIV.

Meanwhile, the AIDS epidemic continues to ravage the country. One in two gay or bisexual Black men is expected to contract HIV during his lifetime, and in 2021, the Centers for Disease Control and Prevention (CDC) found a record-high rate of HIV (61.9%) among Black trans women. Treatment is covered under Medicare Part D, which requires patients to pay around $3,000 annually out of pocket — and according to a 2020 investigation in the Journal of the American Medical Association, such cost sharing decreases adherence to the drug regimen and sometimes precludes treatment altogether. In 2019, there were 15,815 U.S. deaths among those 1.2 million diagnosed with HIV — a significantly higher death rate (around 1,320 per 100,000) than the general population (869 per 100,000) — though the CDC specified that “these deaths may be due to any cause.”

 “We often hear that LGBTQ+ viewers of color don’t see themselves in TV segments or movies, so it feels very alienating and isolating,” said Krishna Stone, the director of community relations at the Gay Men’s Health Crisis (GMHC), an AIDS nonprofit based in New York City. “Representation [on the screen] empowers people who are living with HIV and AIDS because they see themselves.” And television — especially serialized, scripted programs — has long proved effective at educating the public and influencing behavior. Which leaves the question of why the dramatization of AIDS has subsided even when the epidemic itself has not. 

“It’s very much ‘out of sight, out of mind,’ and not because it went away,” said DaShawn Usher, a program officer at GLAAD. “When HIV was largely a gay white male disease and then affected white children and heterosexual white women, public interest was different. But when it began affecting more communities of color, that public interest shifted to public silence.”

***

On June 5, 1981, the CDC’s Morbidity and Mortality Weekly Report first found cases of pneumocystis pneumonia — the pneumonia associated with AIDS — in “five young men, all active homosexuals.” As New York Times Magazine contributor Linda Villarosa observed, the language of the report omitted race, implying, albeit correctly, that all five were white. As the disease spread, HIV/AIDS assumed the reputation as a white, homosexual and urban phenomenon, with San Francisco and New York quickly emerging as major hotspots of transmission, activism and media attention.

Villarosa went on to study how this first CDC report inexplicably chose to exclude two documented cases of pneumocystis pneumonia, both in Black men. The health policy nonprofit Kaiser Family Foundation (KFF) found via a special data request to the CDC that “Black Americans have been disproportionately affected by HIV/AIDS since the epidemic’s beginning, and that disparity has deepened over time.” And since the development of combination anti-retroviral therapies in 1995, the national epidemic has further concentrated on Black communities, particularly in the South.

Usher observed that these communities today — queer, rural, of color — are little-represented in the television industry, which is perhaps one reason that stories of HIV rarely make it to writers’ rooms. Another reason for lack of representation is more obvious: “Maybe the sense of urgency is not there in the same way it once was,” said Matt James, the former executive vice president of KFF, explaining that effective treatment rapidly transformed HIV from a death sentence into a manageable condition. Chronic disease is less dramatic, and therefore less suited for the screen.

But throughout the early decades of the crisis, plenty of shows tackled AIDS. In the 1980s, when AIDS was sweeping the country with no cure, there were storylines of fatal diagnoses on “St. Elsewhere” (1986), “Mr. Belvedere” (1986), “Hill Street Blues” (1986), “Another World” (1987), “Designing Women” (1987), “The Equalizer” (1987) and — notoriously — “Midnight Caller” (1988). This last show prompted significant blowback from LGBTQ activists for its fear-mongering portrayal of a bisexual man purposefully infecting many partners. 

But as AIDS activism took hold in the ’90s, HIV/AIDS portrayals became more empathetic, according to Stephen Massey, who served as KFF’s associate director for entertainment media partnerships. Plotlines appeared on shows like “Degrassi High” (1990), “Golden Girls” (1990), “thirtysomething” (1991), “Neon Rider” (1991), “A Different World” (1991), “Life Goes On” (1993), “General Hospital” (1995), “Murder One” (1995), “Beverly Hills: 90210” (1996), “NYPD Blue” (1996), “Oz” (1997) and “Law & Order” (1998), while “ER” spotlighted a lead character whose experience living with HIV spanned several seasons (1996-2000). While major storylines decreased after the development of effective anti-retroviral therapies, which reduced viral load to an undetectable and untransmissible level, HIV continued to appear throughout the aughts, in shows like “Sex and the City” (2000), “Queer as Folk” (2001-2005), “Girlfriends” (2003), “Everwood” (2004), “Nip/Tuck” (2004), “Commander in Chief” (2005), “House” (2005), “South Park” (2008), “Brothers & Sisters” (2010), “Law & Order: Special Victims Unit” (2010), “Shameless” (2011) and “The League” (2013). Most recently, “How to Get Away With Murder” (2014), “Empire” (2015), “Looking” (2015), “Transparent” (2016), “Pose” (2018), “Designated Survivor” (2019), “Dear White People” (2019), “Tales of the City” (2019) and “It’s a Sin” (2021) continue the representational work — decreasing in number, but including more communities of color, with many featuring Black or brown characters living with HIV.

Certainly not all TV portrayals are admirable. Sue Hyde, who worked at the National LGBTQ Task Force for 30 years, observed succinctly: “Most of them suck,” as both art and public-health messaging. Shows often perpetuate stigma even as they try to fight it — for example, by centering the straight, empathetic character rather than the character living with HIV, or by writing HIV stories primarily as period pieces. Examples like “Pose” and “It’s a Sin,” which follows the lives of five gay men as they confront the epidemic in London, set plots in the early 1990s, at the most lethal point of the epidemic. These programs perpetuate, for millions of viewers, the false idea that HIV is a problem solved. 

Still, Massey said, at least those shows kept HIV/AIDS in the national conversation. “I think most TV portrayals have been helpful because these integrations open up space for conversation,” he explained. The alternative — silence — is what AIDS activists rallied against in the 1980s and 1990s with their famous slogan, SILENCE = DEATH.

Conditions today should be far more favorable to portraying HIV/AIDS on TV. For one thing, there now exists a robust and institutionalized partnership between the entertainment industry and health advisors — a partnership that the AIDS epidemic largely inspired. According to its website, GLAAD emerged in 1985 in reaction to “defamatory and sensationalized” depictions of HIV/AIDS in the media. Then, in 1994, the CDC created a public health-minded program to encourage accurate information about the epidemic in TV and film in an effort to reduce transmission. (That was the year with the highest death toll in the U.S., numbering nearly 50,000.) This initiative evolved into Hollywood, Health and Society (HH&S), a program within the USC Annenberg Norman Lear Center that partnered with the Writers Guild and Producers Guild, reviewing scripts and doing outreach work with writers to bring public health topics to their attention.

Meanwhile, the economics of television were evolving to allow for more controversial content. Throughout most of the twentieth century, shows remained fairly conservative because broadcast networks needed to reach a mass audience. They earned much of their revenue from companies buying commercial slots or even full-scale sponsorships, which threatened to pull out if shows deviated from social norms. But in the mid-1980s, cable TV introduced a subscription model, which meant that audiences became more self-selecting and demographically niched. Mass viewership began to dissolve, and with it, so did the old model of clinging to the safe middle ground.

Now, in the era of streaming platforms, audiences have gotten even more siloed; creatives have gotten even more free. According to Lindsay Sloane, senior executive vice president at MGM Television, new standards and practices associated with streaming platforms mean that there have never been fewer limitations on writers and producers to push the envelope. This stands in stark contrast to the industry’s apparent disinterest in representing HIV, which Usher describes as “lowest on the totem pole of issues that people care about” for its concentration in marginalized communities, not to mention its associations with gay sex and injection drug use. 

“I think the progressive bent of TV is a façade,” he said. “Yes, there are more writers that are queer, there are more writers that are people of color…but the top of the industry has not changed.” And it’s up to those at the top, the network executives, to greenlight projects that writers bring to the table.

Canals told the Los Angeles Times that he pitched “Pose” to 166 different teams before meeting Sherri Marsh, who introduced him to Ryan Murphy, whose shows “American Horror Story” and “Feud” had already brought in significant money to FX. Usher pointed out that it certainly didn’t hurt that Murphy is white and well-established in the industry. It took two and a half years before “Pose” got approved, and even then, it was a matter of chance.

***

“I’m sitting here literally shaking my head just wondering why, with all the diversity and all the stories that are happening on television, the ball has been dropped,” said Gloria Reuben, who starred as Jeanie Boulet on the mega-hit “ER.” NBC ran the medical drama for 15 seasons, from 1994 to 2009, at one point drawing 48 million viewers per episode. (“Pose,” a hit by today’s standards, represents less than 2% of that audience.) “ER” was the most-watched program in the U.S. in 1995, with roughly 14 million more viewers than the second-ranking program, “Seinfeld.”

Jeanie is a physician assistant who finds out that she is HIV-positive. She is married, straight, Black and a healthcare provider — an intersection of identities that the writer-producer, Neal Baer, said made her a compelling character. Jeanie comes to terms with her husband’s AIDS and her own infection over the course of three seasons, ultimately adopting a son with HIV. Co-executive producer Carol Flint told Entertainment Weekly in 1996, “Until now, TV AIDS story lines have mostly been about somebody wasting away. That’s not what we wanted.” Aside from Robin Scorpio of “General Hospital,” Jeanie was, at the time, the only regular HIV-positive character in American TV history not to get killed off. 

Baer, himself a physician, was concerned about misinformation, and wanted to leverage “ER” as a platform for promoting healthy behavior and accurate information. He was a medical student during the height of the epidemic, from 1991 to 1996, and began writing “ER” in 1994 while a fourth-year student at Harvard Medical School and then as an intern at Children’s Hospital Los Angeles. Baer observed that, while there were plenty of characters dying of AIDS on TV, there was a lack of television representation of life — of living — with the virus. 

Baer was interested in the influence of TV on behavior, which has been studied for nearly as long as the medium has existed. Throughout the 1950s and 1960s, public health officials experimented with promoting healthy behaviors using television — for instance, measuring a sharp uptick in polio vaccination after Elvis Presley got his on “The Ed Sullivan Show.” In 1981, George Gerbner, who was the dean of the Annenberg School for Communications at the University of Pennsylvania at the time, published the seminal study “Health and Medicine on Television,” which examined TV’s capacity as a public health tool. The study found that Americans spent more time watching TV than doing anything except sleeping, and concluded: “Although television is only one of many influences in life, it may well be the single most common and pervasive source of health information.” 

Yet these studies hardly recognized entertainment media like scripted television, which HH&S director Kate Folb said is more powerful than film because it is serialized. “It stays with you much longer and can have a much longer impact,” she explained, giving as example “Grey’s Anatomy,” which has been airing since 2005 and accrued a loyal fan base of over 15 million viewers per episode.

Baer partnered with the Kaiser Family Foundation to study how much viewers learned about two health issues woven into the plot of “ER”: HIV and human papillomavirus (HPV), which can cause cervical and other cancers. In a 2002 report, they found that 51% of viewers said they talked with friends or family about health issues raised in the show, 32% felt that information learned in the show informed their own health choices, 23% went to other sources for additional health information and 14% contacted a medical provider because of something they saw on the show. The reasons for television’s proven impact, Baer said, are simple: “It’s dramatic, it’s emotional, it has a big audience.”

“You connect with the characters, you think about it all week long, then you watch it [the show’s next episode] again the next week,” Folb added, describing the way that series TV builds relationships between viewers and characters over time. “On some level, you almost think of them as your friends or as people in your life.”

Jeanie Boulet was this person. Reflecting on the enormous platform she held for five years as a star on America’s most-watched television program, Reuben recalled fans telling her that Jeanie’s story inspired them to get tested or get treatment. When she left the show in 2000, at the end of season six, she threw herself into AIDS activism, introducing Kofi Annan at the UNAIDS Day ceremony in 2004 and keynoting the first Black Women’s Conference on HIV/AIDS in 2005. But she said those platforms didn’t come close to Jeanie’s: “I wouldn’t have changed a thing.”

***

Television’s capacity to influence behavior makes these questions of representation all the more urgent. On Sept. 19, “Pose” brought home zero performing Emmys, unleashing a torrent of Tweets about whether the snub was indicative of something deeper in Hollywood. Ahead of the awards ceremony, GLAAD and 36 other LGBTQ advocacy organizations had co-written an “Open Letter to Emmy Award Voters about ‘POSE’” in which they urged: “[V]oting for POSE would signal that many of the issues the show so poignantly addresses — transphobia, homophobia, racism, homelessness, poverty, violence against the trans community, Black and brown queer voices, and the AIDS epidemic — very much matter.” 

Yet “Pose” lost Outstanding Drama Series, as well as Outstanding Lead Actor and Actress in a Drama Series, to “The Crown,” a docudrama about Queen Elizabeth. Frustrated, Usher pointed out the contrast between the shows. “The thing that sucks is that we’re often on display only for the optics of diversity,” he said.

In response to their findings of record-low HIV representation, GLAAD launched a challenge: for the television industry to introduce at least three new or recurring LGBTQ characters living with HIV each year. This challenge came after GLAAD partnered with Gilead Sciences, a pharmaceutical company that produces HIV treatments, to conduct a “State of HIV Stigma” survey, finding that nearly nine in 10 Americans agree that “people are quick to judge those with HIV.” GLAAD’s report concluded, “Hollywood has the opportunity to lead and create groundbreaking programming which can both educate and entertain audiences.”

Experts in the industry have mixed reactions to this quota approach, which gets at the fundamental question of whether television has a duty to put social issues in the national conversation — or whether (as MGM’s motto reads) “ars gratia artis,” meaning that art is for art’s sake and therefore should not be political or didactic. 

“I think we have a responsibility to reflect back the world of our audiences,” said Janet Graham-Borba, the executive vice president of production for HBO Films. But she is hesitant about a “shoehorn” approach to representation, saying that it “may be damaging to storytelling to say, ‘Well, you need a this-person and a that-person and a that-person.’” 

“The danger is in treating people as issues,” Poniewozik agreed, adding that he is “loath to put the onus on an art form for social improvement.” 

At the same time, Poniewozik said that it is important for advocacy groups like GLAAD to monitor representation and set targets for more. “I don’t think that’s in any way anti-art,” he explained. “The issue tends to come up more on the creative end. If you are creating a certain character just to be a vehicle or a human embodiment of a certain issue…then you’re going to create characters who are less fully realized than others. And that doesn’t really do anybody a service.”

If the quality of the characters determines whether issue and story work together, GLAAD looks ahead eagerly, hoping that creatives will rise to the challenge to produce rounded, fully realized personas — ones who can connect with viewers and bring HIV/AIDS into the mainstream once more.

But the responsibility of representation is grave. About the still-raging epidemic, Usher warned, “It’s not high priority for folks unless they’re close to it, unless they have a lived experience.” And television can be a pretty good proxy.

Billy Porter, the Broadway actor and “Pose” star, recently disclosed that he is HIV-positive after 14 years of silence, and credited the show’s representation with fortifying him to speak up. Porter played Pray Tell, the father figure and emcee of the ballroom who receives an HIV diagnosis at the end of season one. Porter told The Hollywood Reporter that he used Pray Tell as a “surrogate” for years, until he himself was ready to come out as HIV-positive at the end of the show’s third and final season. 

“Years of trauma makes a human being skittish,” Porter explained. “But the truth shall set you free.” For him, that truth was “Pose.”

To contact this reporter, email i.ruehl@columbia.edu

Author: Isabel Ruehl

Writer specializing in health, disability and the arts.

Create your website with WordPress.com
Get started