Jonathan Klein resents the assumption that positive people like him are exclusively responsible for exacerbating the HIV epidemic. And he questions whether HIV-positive people should be the focus of prevention efforts such as the Centers for Disease Control and Prevention’s 6-year-old program Prevention for Positives (P4P).
“It’s pretty clear [to me] that most new transmissions are coming from people who assume they’re negative,” says Klein, who runs the gay travel agency Now Voyager in San Francisco. “The vast majority of people who [know] they’re positive take steps to eliminate or at least greatly reduce the chance they’ll transmit the virus.” (Research backs this up.)
Richard Wolitski, PhD, deputy director at the CDC’s Behavioral and Social Sciences Division of HIV/AIDS Prevention (and himself living with HIV), says P4P is not intended to be a slap in the collective face of positive people. “We recognize that the majority of people with HIV perceive themselves as having a responsibility for preventing HIV transmission,” Wolitski says. “Prevention for Positives is one part of a comprehensive strategy, and both HIV-positive and negative people play an important role.”
Many positive people have never heard of P4P but practice their own versions, including using condoms, practicing serosorting (having sex only with people of the same HIV status), keeping viral loads undetectable—and disclosing their status. “If I meet someone and it looks like we’re going to have sex, I say something,” says Blaine Stanford, also of San Francisco. “I meet most people online, and all my profiles say ‘poz,’ so I rarely [have to] talk about it.” But Dave Mahon, another positive San Franciscan, says, “There’s probably a judgment call each time. I guess we all make up our own rules as to how much risk is involved for yourself and the other person.”
Wolitski thinks positive people could use some backup in making these choices. “When I was first diagnosed,” he says, “issues such as how to disclose and how not to transmit HIV to anyone were big for me. And our research shows that these are important issues to the vast majority of people living with HIV.” So the CDC funds four P4P programs—practiced by AIDS service and community-based organizations—to help people develop strategies for disclosing their status to family, friends and partners.
One program, Healthy Relationships, involves five 120-minute sessions. Working in tandem, someone living with HIV and a mental health professional lead workshops, teaching participants problem-solving and decision-making skills to help them navigate safer sex and disclosure. Another program is Willow (Women Involved in Life Learning from Other Women), co-facilitated by women with HIV. Partnership for Health trains health care providers to integrate prevention messages into every clinical visit, and Together Learning Choices (TLC) puts 13- to 24-year-olds in small, interactive group settings where they hone their abilities to set goals, solve problems, communicate assertively and negotiate safe sex.
Before HIV combo therapy became available in the mid-’90s, the CDC focused on medical treatment of positive people, paying little attention to their sexual relationships and struggles with preventing transmission. In 2001, with positive people living longer and being more sexually active, the CDC turned to prevention strategies. Wolitski says P4P evolved from community programs around the country—weekend retreats in Atlanta, support groups in San Francisco and others—that were helping newly diagnosed people in precisely the ways P4P is doing now.
Forty-eight-year-old Tony Mills, MD, remembers when HIV prevention was directed mostly at negative people. Posters touting safe sex were plastered on nightclub walls and condoms placed in toilet stalls—and HIV-negative people were the ones urged to use them. “Then,” he says, “the CDC [developed] the perspective that maybe we should be targeting people who are positive, getting them to take responsibility and have safe sex.”
Mills, who is HIV positive and served on the board of the American Academy of HIV Medicine, helped produce a variety of P4P tools, including a video to teach health care providers how to talk to their HIV-positive clients about safe sex and disclosure.
Mills discounts the notion that P4P encourages doctors to pry into their patients’ sex lives and wag fingers at them. When he sees new HIV patients, Mills says, “I take cues from them, playing off what they tell me about themselves, and parlay that into a discussion rather than a lecture. I focus on trying to get my patients to be as healthy as possible, not [on pressuring them] about protecting society, which could certainly raise people’s hackles.”
Mahon says his doctor has never asked him about safer-sex practices, but he would view such a discussion simply as part of the doctor’s job in helping keep him healthy. Stanford agrees that it is “what a good doctor should do, but I don’t think they should nag or bang someone over the head.”
But Klein, who has been positive for at least 20 years, feels different. “My doctor has never given me that kind of lecture, and it’s a good thing, because I’d jump down his throa t. It might be part of a doctor’s job to disseminate information about HIV transmission, but they shouldn’t be telling patients what degree of risk is acceptable. That’s something each person needs to decide for him or herself.”
Mills hasn’t received a negative response to his safe-sex discussions—perhaps partly because he is openly gay and HIV positive. “I try to create an environment where people can be open. Sometimes on the first visit they tell me things that they have never talked about before—sometimes more than I want to hear,” Mills laughs. “But that’s fine because if they’re ever in a crisis—whether it’s unsafe sexual practices, drug use, the possibility of reinfection or superinfection—they know I won’t judge them.”
And yet, Klein stresses, focusing too much effort on positive people could misdirect our limited prevention efforts and funding. After all, in which scenario is a negative person more at risk for HIV: having safe sex with a positive person, or having unsafe sex with someone who says he’s negative but hasn’t actually been tested?