In the 25 years since the first World AIDS Day, we have made great strides in the treatment and prevention of HIV. During this time, the advent of the Internet has also transformed how gay guys meet one another. Despite these advances, our community is still struggling with how to communicate about HIV and how to treat those who are HIV positive. This is especially evident in the way we are accustomed to asking guys to disclose HIV status online, which has remained largely unchanged since the advent of profile-based websites over 20 years ago.
Gay guys have been connecting online since the late 1980s. What began as dial-up bulletin board services gave way to IRC channels and "m4m" chat rooms on AOL. Profile-based websites like Manhunt and Adam4Adam soon followed, and were the preferred medium for over a decade. Today, location-based smartphone apps are ascendant, used daily by millions of guys to chat, date and hook up.
As Founding Partner and head of product at SCRUFF, one of the world's largest online gay communities, I have the great privilege of contributing to the design of features that improve the way guys connect. One of the first features our members requested after we launched in 2010 was the ability to disclose HIV status in their profiles. Before moving forward, we wanted to be sure we got it right. My personal experiences with this question, coupled with current opinions in public health, revealed numerous hazards with the way it is customarily done.
Until recently, disclosure in online profiles has taken one basic form: "HIV Status." Most profile-based services present this question along with a rigid list of status options, including "Positive," "Negative" and "Ask Me." The option selected is then prominently displayed on a user's profile alongside other biographical data like height, age and ethnicity.
The simplicity of the question and its answers conceal several serious issues. For "Poz" guys uncomfortable disclosing status in their profile, "HIV Status" presents a fraught choice: to answer "Negative" would be dishonest, but any other answer -- including no answer -- is often interpreted by other users as a tacit disclosure. It's also a problem for HIV negative guys searching for the same. Seeing "Negative" presented next to other profile "stats" conveys a false sense of permanence.
Unlike a guy's height or ethnicity, a "Negative" status can change overnight.
Even when "HIV Status" information is presented along with the date of a guy's last test (as some apps allow), it still fails as substitute for a frank discussion about his safer sex practices since that date.
And what is the effect of "HIV Status" for the online community as a whole? Bad.
When most of the profiles on a site say "Negative," it unconsciously reinforces the sense that HIV negativity is the only acceptable social norm, and inadvertently stigmatizes guys who are Poz.
"HIV Status," and the faith we place in seeing "Negative" in a profile, are symptomatic of the paradoxical relationship our community now has with HIV: On one hand, we're no longer collectively afraid of dying of AIDS, as years of data showing a decline of consistent condom use shows.
On the other, our community remains collectively terrified of the perceived social repercussions of being HIV positive. This terror is a toxic remnant from a time of crisis, when our understanding of the virus that causes AIDS was limited, and the prognosis for those who contracted it was dire. It drives too many of us to cling to "Negative," "clean" and "disease-free" as badges of honor. The exclusory expectation that "UB2" belies a notion that being "Negative" is somehow morally superior, and that HIV infection is somehow due punishment for the "sins" of non-monogamy or imperfect condom use.
The dilemmas presented by "HIV Status" aren't just academic: For most of my gay life, I struggled with a profound fear of contracting HIV. I was the guy who dreaded the "HIV Status" prompt when filling out profiles. I was the guy who'd use a condom yet still panic the next time I caught a cold. I was the guy who put off getting tested for years because a positive result would disappoint my family and alienate my friends more than I could bear.
Relentless fear and inhibition eventually drove me to experience what public health experts refer to as "prevention fatigue". On several occasions, I allowed myself to make decisions (usually after a few drinks) informed only by having seen "Negative" next to "HIV Status" in the other guy's online profile. This led me to at least one major scare (even as my profile stated that I was "clean").
And yet, I was also the guy who would shake his head in quiet judgment upon learning that someone was HIV positive.
A lot has changed since then. Years of life experience, and going on PrEP, have finally allowed me to move past my HIV-phobia. Since then, I've dated and hooked up with guys who are Poz, and I've never felt more confident and empowered about my sex life and health.
What I learned on my journey heavily informed our thinking as we deliberated on how to do a better job with HIV status disclosure in SCRUFF.
In 2013, we added "Poz" to the list of communities with which a member on SCRUFF can identify. It is visible on profiles and can be used as a filter to find other guys who identify as Poz. In addition, guys can indicate that they are "into" various communities. This allows guys to be welcoming to Poz members, whether or not they are Poz themselves.
Allowing Poz members to disclose their status in this way reinforces the fact that they are not alone in their HIV-positivity, and gives them a community of other Poz guys to connect with. Additionally, those who prefer to discuss status privately are spared the fraught choice that old designs imposed. And by not presenting "Negative" status information, we avoid facilitating risky assumptions, or fostering an environment conducive to HIV stigma.
We must move beyond "HIV Status" and the stigma it symbolizes because the consequences of HIV stigma go far beyond hurt feelings. The fear and shame caused by stigma discourage honest discussions about safer sex, and deters many from knowing their status. Here's the way I think of it: Stigma leads to shame, shame leads to silence and silence leads to new infections.
We need to do better. Our approach to disclosure is a small, first step. It won't be our last.