Watch your words. Lose the labels if you want to prevent HIV

Risky business.
Risk taker.
High risk.

That’s not how people want to be seen when it comes to HIV. In the epidemic, the word “risk” is associated with the notion of “doing something wrong.”

So using the words “at risk” becomes risky in itself. It runs the risk of turning people off, and away from prevention messages. People may not avail themselves of condoms or PrEP (the HIV prevention pill) if they don’t identify with risk.

If they don’t identify with HIV risk, they don’t identify with HIV prevention.

Have there been any times in the last year when you’ve had unprotected anal sex with someone?

If they say, ‘Yeah, but only once or twice,’ then I say, ‘You really need to consider PrEP, because all you need is that once or twice.’

While “risk” tends to blame behavior (as in “taking risks”), “vulnerability” may more accurately express the reality. There are many things that can make people vulnerable to HIV, including their environment—not necessarily their behavior.

“I find that people struggle with labels, no matter what the label is,” says Gabriela Zapata-Alma, Program Director for Substance Use Treatment at Thresholds, a mental health organization in Chicago for people with low incomes. “Especially because different labels mean different things to different people.”

“It’s about stigma,” she says. “Whatever word we use as a label is stigmatizing and then people reject the stigma.”

“I like to frame things in the positive whenever possible,” she says. “For example, ‘What are you doing to protect your sexual health?’ Then we can discuss the gaps. I’ll ask questions. ‘Have you heard of PrEP?’ ‘What are your thoughts on PrEP?’ ”

Risk and vulnerability may be very similar, but “might you be vulnerable?” may be taking a softer approach that makes people more comfortable. Even then, a label’s a label. Zapata-Alma remembers when a client became angry after she said to him, “It sounds like you’re feeling vulnerable.” He yelled, “I’m not vulnerable!”

One way or another, however, HIV prevention messages need to be made.

Years ago, when Dr. Thomas Klein of Klein and Associates in Chicago asked a patient if he wanted to go on PrEP, the patient said he wasn’t at risk but would think about it.

Three months later the young man returned and was HIV-positive.

How, if he wasn’t “at risk”?

Dr. Klein agrees that the word “risk” doesn’t work well—“ ‘vulnerability’ is much less of a negative term,” he says. “That may be a way to get through people’s barriers. You just have to put it in a different way.”

He asks his HIV-negative gay male patients, “Have there been any times in the last year when you’ve had unprotected anal sex with someone?”

“If they say ‘Yeah, but only once or twice,’ then I say, ‘You really need to consider PrEP, because all you need is that once or twice.’ ”

One patient on PrEP stopped it when he entered into a relationship, but then went out one night and met someone. He became HIV-positive.

There’s also the issue of sexual assault. Dr. Klein says that in addition to PrEP, more attention needs to be given to PEP (post-exposure prophylaxis). PEP is the use of medication for one month following a possible exposure to HIV. PEP is highly effective at preventing HIV infection, but he said too many people are still unaware of it. It must be started within 72 hours of exposure.

He also tells his patients about Treatment as Prevention.

“I think it is important to have those disclaimers, that if you know you’re having sex with someone who has HIV but is undetectable, all the studies have shown that they’re not going to pass on the virus,” he says.

Of note, the CDC uses “condomless sex” to refer to sex without a condom, as sex with the protection of PrEP or TasP is not considered unprotected.

At TPAN, the non-profit, community-based organization that publishes POSITIVELY AWARE, people who come in for HIV testing also often disassociate from the word “risk.” They will say they’re not at risk, but then check off all of the risk boxes: Had sex while intoxicated or high. Had sex with person of unknown HIV status. Had an STI diagnosis. And so on.

“Sometimes they identify with ‘risk,’ because they like to do what they do, and sometimes they don’t,” says Aquea Wynn, Prevention Manager at TPAN. “A lot of times we get blown off. ‘Oh, yeah. This is only a one-time deal.’ Then we see that they’ve been here before for the same reason, or a couple of times.”

She talks about stages of change, of “being ready to do what they need to do to keep them and their partner safe. Being ready to allow us to help them get there.” TPAN provides interventions, such as counseling and referrals to PrEP.

“People have their own definition of what risk means,” adds Wynn. “Different partner. Share needles. Don’t use condoms. Use condoms sometimes. We have to ask open-ended questions. ‘So, what do you do to protect yourself from HIV?’ Because if you ask a close-ended question, people don’t tell you jack.”

She notes another reason why “risk” is burdensome: the fatigue factor.

“A lot of people feel a level of shame because they saw their friends taken out by the epidemic, shame for being gay, bisexual, IDVU [intravenous drug user]. All those days of being inundated with risk, risk, risk, so after a while, you don’t want to hear that any more! We have to find new ways of saying the same thing and help people connect with where they’re at. Because the message is the same,” says Wynn.

She adds that culture, however, becomes important. “Black gay men don’t like the term ‘barebacking.’ That’s white terminology to them. They say ‘raw.’ That’s why ‘what do you do?’ is so important. You don’t just give them a cheat sheet of what the CDC came up with.”

Dazón Dixon Diallo, Executive Director of Sister Love in Atlanta and an international activist who works in South Africa as well, says she early on realized that, “Not everything that creates an opportunity for HIV acquisition is an active decision.”

“So then the question becomes, how do you ascertain HIV acquisition opportunity,” she continues, “a situation where a substantial opportunity for HIV acquisition is more related to the conditions in your life, such as where you live.” Many people, for example, don’t know about the effects of higher community viral load or greater incidence of HIV where they live and choose their partners.

“Understanding those things is actually getting the message across better than the idea that, ‘If you’re doing this or that, you’re at greater risk.’ ” She says this is especially true when people are emotionally or economically needy, or otherwise dependent on others. “That’s a vulnerability,” she says. When educating women on risk factors for HIV, many will say, “Oh, I didn’t know that a lot of these things were risky.”

She finds that some people see the risks in their community or their social groups, but don’t believe it can happen to them.

“There are women, and some young gay men,” she says, “who see that their friend is with a man who cheats, or is needle sharing, or transacting sex for favors or money. But ‘that would never be my man.’

“I just think that people make concessions based on their own comfort level,” she explains. “And based on their own knowledge, which is still pretty low for most folks. They make concessions based on stigma around HIV and risk, because it’s also denial. ‘Yeah, I might be doing these things, but it’s not as bad as what I see.’ That sense of denial and that concession of ‘not me’ creates more vulnerability than it does risk taking.”

Then there’s the degree of risk perceived. “I’ve had people say, ‘I may be at risk, but I don’t think I’m at risk enough to take a pill every day.’ Or they say, ‘Well, I only had three boyfriends last year and I only had unprotected sex with one of them.’ So that’s different from, ‘I had 10 partners and I had no protected sex,’ ” she explained.

“All the science tells us that young black gay men do not have more unprotected sex than anyone else,” she adds. “It’s just that who they are and where they are gives them a greater opportunity to get HIV than anybody else. Especially if they have, for example, more trauma. If they get kicked out of their home. If their masculinity is questioned every day of their life. Because they’re black, they’re at more risk for going to prison any given day. That vulnerability has more weight in those young men’s lives than how many times they have unprotected sex.”

Dr. Dawn Smith, Medical Officer for the CDC’s Division of HIV/AIDS Prevention, says that, “ ‘Risk’ is a term that applies to behaviors that may expose and infect a person with HIV. It is also applied to groups of people that engage in behaviors that confer risk of HIV exposure. For example, people who inject drugs (PWID) are a population at higher risk of HIV infection through sharing needles or other injection equipment. With this definition of ‘risk’ in mind, CDC testing, counseling and education materials focus on identifying the risk of specific behaviors people may engage in, instead of defining the individuals themselves as ‘at risk.’ ”

“In contrast,” says Dr. Smith, “the term ‘vulnerability’ is used to define situations in which HIV exposure is likely. Nearly anyone can be infected with HIV if exposed sexually or through injection drug use. Therefore, we are all biologically vulnerable to infection.”

Clearly, “risk” is still good shorthand terminology for those who understand HIV risk factors well.

For those who don’t, it’s a loaded word. It helps create an environment where people cannot discuss their behavior, or downplay it. Even to themselves.

“That’s why I think PrEP is important from a vulnerability standpoint, because it is a prophylactic,” says Dixon Diallo. “You don’t have to think about taking risk, you only have to consider that anything can happen, so I need to take this.”