The following opinion piece first appeared in the POSITIVELY AWARE Summer 2015 special issue on PrEP. The fabulous David Evans, super-smart and always kind, served as guest editor. A great writer and editor, he worked at the time with Project Inform, a national HIV treatment information service based in San Francisco that has, unfortunately, closed. I will always remember how David gently led me to cut back on the issue of sexual assault. The statement that remains here serves its purpose of awareness. David was concerned about adding stigma to men living with HIV. He was correct, of course. One other note: we no longer use the word “risk” around HIV acquisition. Rather than blaming people and making things worse, we choose to acknowledge the disproportionate effects of a world still filled with discrimination and resulting discrepancies that disproportionately harms our health. We also no longer use “infected” (yuk) or “HIV-positive” (opting for “living with HIV” instead). One last thing: the pediatric HIV doctor who shared the insightful story was the incomparable Donna Futterman, MD. —EV
Years ago, when a doctor in the Bronx was told that he should test his 18-year-old pregnant patient for HIV, he asked, “Why? What do you think she’s been doing?”
With that story, the effects of stigma became clear to me. If a doctor doesn’t understand how HIV is transmitted, what chance does the public have? He seemed to think that you had to be a prostitute to get HIV, a position of ignorance and misinformation. Because that’s what stigma does, it drives misinformation. You have to be a prostitute to get HIV. You have to be gay. You have to sleep around.
The most vulnerable communities affected by HIV were dehumanized with stigmatizing words that helped delay research and treatment.
Faggot.
Junkie.
Whore.
Today, stigma remains as alive and well as ever while the epidemic evolves, except that now it’s a pill for HIV prevention that has moralistic panties up in a bunch.
That’s right: A pill to prevent the scariest STI in history is being condemned, along with the people who dare to take it, thereby making a bid for greater sexual freedom. (How dare they!)
You would think that people taking a pill shown to reduce the risk of HIV by 92% or more would be hailed as responsible heroes in the fight against the epidemic. Instead, the Sex Police have labeled them “whores.” After all, Truvada PrEP, just like the birth control pill before it, gives you greater freedom to be a slut. (Never mind that you can be a slut without taking any prevention pills or methods at all. You would just be a slut at higher risk of every STI.)
It is sadly bizarre that we’ve stigmatized having HIV for so long and now we’re stigmatizing a prevention method that helps people stay HIV-negative.
What’s even more bizarre is that the stigma towards gay and bisexual men is coming primarily from the last group of people I would have expected to be anti-PrEP: gay men, many of them themselves HIV-positive.
It was an HIV-positive gay male writer who coined the phrase “Truvada whore” to condemn HIV-negative men taking the daily pill to prevent infection. Although he took it back later, the damage was done.
Outreach workers on the West Side of Chicago heard “Truvada whore” over and over as they promoted a PrEP study to young black gay men, who have the highest rate of HIV in this country. It’s heartbreaking. The neighborhoods where they promoted the study have the highest infection rate in in the city and desperately need as many prevention methods as possible.
Later, on Chicago’s North Side, a nurse who had heard about PrEP told his gay doctor that he wasn’t at risk, but would think about it. He returned three months later and found he had HIV. We mislead people into feeling safe if they don’t “whore” around. As with pregnancy, it’s hard to believe you can get it after just one time. Or maybe three times. Or one partner—or three.
And even if someone was sleeping around, wouldn’t that be all the more reason to suggest that they consider using Truvada PrEP to avoid HIV infection if they’re at risk?
Kudos to Adam Zeboski for taking back the term and creating the Truvada Whore educational campaign (with fabulous T-shirts).
Although pretty much any sexually active person is at risk for HIV if they don’t protect themselves, it’s been shown that those at particularly high risk often don’t recognize it. For example, research has found that many gay men who reported not being at risk for HIV were actually already infected.
At any rate, it would be a disservice to lead people to believe that they are safe when that is not exactly how the epidemic works—marriage, monogamy, fewer partners, and so forth are not vaccinations against HIV. On the surface, all of these would seem to reduce risk. Instead, each can lull a person to falsely assume that their partner actually knows their HIV status or is being faithful. In communities where HIV is highly concentrated, particularly the gay and African American communities, these forms of risk reduction are simply too impotent to overcome the odds that a partner is HIV-positive and doesn’t know their status.
All in all, the words “high risk” or “at risk” for HIV are misleading, and even stigmatizing in themselves. Anyone honest enough to recognize a need for PrEP is truly courageous.
We’re also told to “just use condoms,” which ignores some ugly secrets, such as the fact that sexual assault among many, especially gay men, remains an unrecognized danger, sometimes resulting in seroconversion.
Here’s the irony: PrEP puts power back into the hands of the most vulnerable individuals, notably because unlike condoms it doesn’t require getting your partner to slip on some latex. There are many people at risk who could benefit from Truvada PrEP who are already particularly vulnerable to shame for who they are: trans men and women, people who have multiple partners or partners outside a primary relationship and people who love someone who has HIV.
Yet, this self-empowerment may bring stigma upon them.
It is sadly bizarre that we’ve stigmatized having HIV for so long and now we’re stigmatizing a prevention method that helps people stay HIV-negative.
PrEP taker and advocate Damon Jacobs recalls the backlash against distributing free condoms in gay bars in the 1980s and ’90s, because many people thought it would only encourage more gay sex, which they considered immoral. For decades, condoms were actually illegal in 30 states. The cure for syphilis in the 1930s was also condemned because many believed that curing people of an “immoral” disease would only make them more immoral, he said.
A small report on the approval of the birth control pill in the New York Times on May 9, 1960 quoted an FDA spokesman as saying, “We had no choice as to the morality that might be involved.” The statement seems astounding now, but was clearly the norm then.
There’s a catchphrase going around that says “community is immunity.” It comes from research showing that people who thrive are those who have the closest relationships, including friendships and the tribes they’ve built around them. With others who have your back and want the best for you, you—and your health—will do better.
It’s a disgrace that at this point in the epidemic we have to fight for our right to medication and to protect ourselves from HIV. It’s a shame that some of the biggest moralizers in this battle to end the epidemic have come from the group most at risk for HIV themselves, the gay men who have been shamed for their sexuality perhaps more than any other group at risk, even legally prosecuted with sodomy laws. The group, ironically, that has always led the battle to end the epidemic.
Sex shaming is such a shame.