Stigma: a mark of disgrace associated with a particular circumstance, quality, or person
Hearing the words "I'm HIV-positive" made Bryan* ( names and some details have been changed ) freeze.
A 23-year-old graphic designer, Bryan had met a guy at a Boystown gay club, a svelte 25-year-old tourist, Zach, with whom he danced, drank and laughed. Around 1 a.m., just before heading to Zach's hotel for more private activities together, Zach disclosed his positive HIV status. His viral load was undetectablesuccessfully suppressed with a drug regimen to the point it was low to no risk for transmission; also, he was clear of other STDs and he packed an ample supply of condoms.
Bryan declined to go back with him, though, offering a politely worded excuse rather than saying what he really thought: "I don't sleep with HIV-positive guys." Zach, however, had heard those words, or variations of the same, more than a few times since his diagnosis a couple of years ago, and he could see them clearly in Bryan's green eyes. He felt like shitjudged and taintedand while Zach wouldn't lie and tell someone he was negative, he understood why so many others in his shoes have and do.
Bryan ended up getting lucky a couple of hours later at another bar with Alex, an architect-in-training who said he was negative.
There's a twist: Bryan, in fact, was positive, although he wouldn't find out that until six months later, when he got tested for the first time in almost three yearssomething he put off because, in the back of his mind, he was concerned about a bareback encounter with someone he met on Grindr who, the next day, deleted his profile and disappeared, as if in a magic poof of smoke.
"Stigma is really damaging on both ends," said Matthew Rodriguez of the comprehensive HIV/AIDS resource site The Body. "For negative people, stigma can sometimes stop them from getting tested. If they feel they did anything that put them at risk, they may not want to get tested because the result may be devastating. I think it also stops people from interacting with those living with HIV as full people. People just look at you as a status, as a virus."
"Another powerful manifestation of stigma is internalized stigma," added David Ernesto Munar, president and CEO of Chicago's Howard Brown Health Center, "which affects nearly all people with HIV in their disease progression. People not getting tested, not getting care, not getting emotional support and psychological trauma from living with a disease they may believe is emblematic of bad behavior or pejorative status. It conspires and abates the virus in expanding its reach."
At best, HIV stigma can lead to emotional sting, lost connections and deep blows to self-esteem and, at worst, life- and career-threatening discrimination as well as dangerous, destructive behavior to others and oneself. "There is also institutional stigma," Munar noted, pointing out legislation around the country that criminalizes HIV-positive individuals for not disclosing their status to partners, even when engaging in activities that couldn't possibly lead to infection. ( Illinois' AIDS Confidentiality Act was one of these, but successfully amended for the better last year. ) "And juries will often not believe people with HIV because of their bias."
A recent study by Houston, Texas,' LIVE Consortium on the topic of HIV stigma within the gay/bisexual male community was published in the International Journal of Sexual Health ( at www.ncbi.nlm.nih.gov/pmc/articles/PMC4136678/ ). It concluded that, "because it is realistic to expect that in a climate in which HIV has become increasingly invisible and closeted and in which infections are on the rise [due to stigma], gay and bisexual men will be increasingly affected and infected by HIV."
Numerous organizations and campaigns are addressing HIV stigma, from those created exclusively for that purpose, including the two-year-old The Stigma Project and HIV Equal, to online resources like The Body, Avert.org and HIV Plus, to hookup apps like MISTER. The latter, in collaboration with Michigan's Mr. Friendly HIV non-profit, allows members to declare a commitment to "Live Stigma-Free" and date individuals of any HIV status on their profiles.
Despite these, stigma is only getting worse within our own community, which LIVE's disheartening study backs. "There's a fallacy that stigma is lessening," Munar commented. "I think because we've been in a world with HIV for over 35 years and generations have never known the world without it, there's an unspoken sentiment that those who become infected should know better by now. They are more complicit in their infection than earlier generations when we didn't know what was causing this plague. So that puts people with HIV in a very precarious position."
"I find often that stigma is self-imposed, out of underserved and unwarranted shame and guilt," said Olympic gold medalist swimmer Greg Louganis. HIV-positive since the 1980s, his life is chronicled in the new documentary Back On Board, currently making the rounds at festivals. "The biggest problem is it inhibits open communication, and we still in this society have a difficult problem talking about sex."
Longtime AIDS activist Peter Staley, a subject of David France's Oscar-nominated documentary How To Survive A Plague, described stigma as, literally, a "viral divide between those who perceive themselves to be negative and those who are positive."
"I think a large number of negative men, especially if younger, try to avoid HIV just by avoiding people with HIV," he explained. "They think they're protected by a kind of moral code where a positive guy would disclose. On the flip side, the positive guys are so threatened by that stigma that they keep their status a secret, and that perpetuates the false assumption by many negative guys there isn't a lot of HIV in their world. They think it isn't something playing out in their generation that much, even though it is."
New Yorker Steven Colon, a 21-year-old videogame design student who was diagnosed with HIV this past summer, now knows this sobering reality firsthand. Prior to his seroconversion, discovered during routine HIV testing ( preferring to bareback with some partners, he frequently kept tabs on his status ), Colon only had sex with partners who identified as HIV-negative. Not due to stigma, he asserts, but by virtue of the fact that nobody ever informed him they were positive.
After receiving his positive result, he contacted these partners, but none have come forward to acknowledge they were actually positive, or have tested positive since. "It's a little upsetting I don't know who it is," he admits.
Colon, who promotes a monthly superhero/spandex/lycra-themed party at NYC's Pieces bar ( Skintight USA ), found some immediate support amongst a couple of friends who, coincidentally, also tested positive around the same time. Staley said he feels that a major failing with most anti-stigma campaigns is that they play to the choir and fail to reach their target audiences, like gay millennials, whose new infection rates are, as illustrated by Colon's social cluster, rising.
On the ACT UP NY Alumni Facebook page last month, member Rebecca Reinhardt reported some jaw-dropping comments and opinions she overheard at a West Hollywood happy hour for Ivy League twentysomethings. Pearls of overheard misinformation included: Condoms are useless, since they always break and you have only a 2-percent chance of getting HIV from unprotected sex anyway, and PrEP, if you are even aware of it, entails a waste of money since it's just for sex addicts anyway.
"I'm not wagging my finger at these guys," Staley said. "This generation of young gay men is not worse than mine. They're just living in different times. When I was 20, I also perceived risk very differently, and was very dismissive of things that happened earlier in history and didn't think applied to me."
One exception when it comes to prevalence of stigma and misinformation seems to be San Francisco, where many early PrEP adopters live. Even those who argue that PrEP encourages reckless behavior that can cause upticks in other STD infections, like Hepatitis C, are at least having open communication.
"San Francisco is the shining example of where, if you put stigma on a locality ranking scale, you'll find the least stigma of anywhere in the country," Staley said. "They also have a very low HIV-infection rate because guys there talk and think about HIV, and a much more reasoned risk analysis. There will be a negative guy sleeping with positive guys, but asking about their viral load and making certain decisions and positions determined by that. That sophistication is lost on many young gay men outside SF and NYC. I want to figure out the best way to reach them, and its likely going to come from [within] their generation, not mine."
Activist Jack Mackenroth, who was open about his HIV-positive status while a contestant on Project Runway, agrees that it's difficult to get people who don't think ( or want to think ) that HIV directly affects them engaged. He feels that once PrEP use grows more widespread, medical treatments advance, and positive people become more visible, HIV stigma will dissipate.
"It's important that people with HIV should speak their own truth," Munar shares. ""I think a healthy fear of infection is good. We're not promoting that the virus is friendlier and good, but we're trying to redefine that people with HIV are not by definition bad or predators. The more one can see the rich diversity and reality of living with HIV, it plays a powerful role in reframing what this disease is. Most people have no idea. For some generations, like young gay and Latino men, there's a raging wave of new infections. The more we can tell the story from the vantage point of real people, the better we are to mitigate stigma."
Yet, with stigma winning the battle today, is it possible to take this destructive force and, like with the Terminator model T-800, reprogram and somehow wield it for constructive, prevention-forward purposes? To replace fear and loathing with understanding and empathy, and to ultimately humanize HIV-positive individuals, what would that require?
Maybe it would require a variety of shirt sizes.
"It would be useful to set someone down and say, 'imagine you are positive,'" Mackenroth mused. "You want to know what it feels likewear a T-shirt saying you are positive all day long. You will feel that that's like."
That's exactly what founder Kevin Maloney's Rise Up To HIV is doing with its "No Shame About Being HIV+" T-shirts. Members of NYU's First Year Queers & Allies leadership program wear these to experience reactions from those who would perceive their shirt as a status announcement. It's a start, and an experiment that more schools and colleges should look into.
"I've worn it and gotten mixed responses," said The Body's Rodriguez. "Honestly, anyone can get HIV. The whole problem with stigma is [it perpetuates that] someone had to do something wrong to get HIV. But we know from science that with gay men two-thirds of infections happen within the context of relationships. I applaud people who don't let status stand in the way of having a sexual relationship. It's usually not the positive and on treatment guys one should be second-guessing. It should be the ones who don't know. The only ones who know their status for sure are positive."