This Pill Prevents HIV, So Why Are So Many Women Still Being Infected?

A sex-positive advocate breaks down why she’s taking PrEP.

(Photo: Joel Sagat/Getty Images)

Dec 1, 2014· 4 MIN READ
Nicole Pasulka is a writer and reporter who lives in New York City. She has written for Mother Jones, BuzzFeed, The Believer, and the New York Observer.

When Julie Lynn first noticed conversations about AIDS in the mainstream media, it was 1984, and she was a college freshman living in Houston.

Lynn was already sexually active, but until then, “protected sex” had revolved around not getting pregnant. She’d expected college to be a time of sexual and social exploration. But her fear of this new, sexually transmitted, deadly disease “had a very chilling effect,” she said. “I just decided I wasn’t going to have sex anymore.”

For a year, she didn’t. Although Lynn knows that not every straight woman felt this way—plenty didn’t believe the disease could ever touch them, and she acknowledges her fears may have been "alarmist"—sex started to feel like “a giant, giant risk.”

Now 48, working in IT, and living in Connecticut, Lynn identifies as polyamorous, meaning she doesn’t in a monogamous relationship. She is an adamant practitioner of safer sex with a few primarily male partners and occasionally some women. By her own account, Lynn uses condoms and gloves and discusses sexually transmitted infections with people before sex.

Lynn also takes Truvada, a drug used for pre-exposure prophylaxis, or PrEP, that, when taken by a person who is HIV-negative, has been found to be 99 percent effective in preventing transmission of the virus. Lynn found out about the drug this summer after a gay male friend posted a New York magazine article about it on Facebook. Lynn couldn’t believe it was real, and most of her friends had never heard of it. “I kept being convinced I was reading the article wrong,” she said. “How could there be a drug approved for HIV prevention, and none of us know about it?”

Even though Lynn hadn’t heard of Truvada, there are people out there taking and talking about PrEP. Since Truvada was approved for HIV prevention in 2012, the number of prescriptions has grown to around 3,000 users. HIV-negative men choosing to use the drug as a preventive have become increasingly visible in the media and within advocacy circles. They document their PrEP experiences on blogs and in YouTube videos, wear T-shirts claiming the identity of “Truvada Whore,” and on Monday, World AIDS Day, many people are tweeting encouragement and information under the hashtag #PrEP4WAD.

Because PrEP has to be taken daily to effectively prevent HIV, some in the AIDS activist and gay communities worry that the drug could lead to more cases of infection if not used as directed. Michael Weinstein, president of the AIDS Healthcare Foundation, has been the loudest critic of widespread PrEP use, calling it a “party drug” and potential “public health disaster.” But most public health experts and advocates are encouraging men who have sex with men to consider taking PrEP.

Still, these conversations are rarely aimed at women, even though most new cases of HIV infection in the United States occur in women who contract the disease through sex with men.

“Gay men are using PrEP as ‘I’m finally having sex without the same level of fear that I had before,’ ” said Deirdre Grant, senior program manager with AVAC, an advocacy group for global AIDS prevention. So far there’s been no evidence that men who take PrEP engage in riskier behavior because they think they’re protected from HIV. Citing this research, Grant wondered why she has yet to see “the same public, sex-positive narrative where rates of infection are really high—African American women in the South or urban settings.”

Terri Wilder is also frustrated by this lack of conversation about women and PrEP. An organizer with ACT UP, the influential AIDS activist organization that formed during the early years of the AIDS crisis, Wilder has worked in HIV advocacy and prevention since 1989. She grew up in Georgia, and seven years ago, an old high school friend called to say she was HIV-positive. The woman didn’t know how she contracted the virus, but when Wilder heard the news, she thought, “We all failed her.”

“There were no messages targeting her, a divorced mother of two from the rural South,” Wilder said.

Earlier this year, the GMHC in New York City held three forums to educate people about PrEP. Wilder went to two of them, and each time, she says, she was one of about five women in the room. In July, Wilder approached the organizers about putting together a panel specifically for women. That’s how she met Julie Lynn.

“Hi, I’m on PrEP,” Lynn wrote in response to Wilder’s call for women using Truvada. “I’m bisexual, polyamorous, and very sex-positive,” she explained.

“It was a miracle she contacted us,” Wilder said. On the panel, Lynn talked openly about her reasons for taking Truvada and her experiences on the drug.

Another woman who spoke that day was Poppy Morgan, who was initially refused a prescription for PrEP when she told her doctor she wanted to have a baby with her HIV-positive partner. Most of the stories Deirdre Grant has heard about women using PrEP involve what she refers to as “PrEP-ception”—an HIV-negative woman who takes the drug so she can conceive a child with an HIV-positive man.

Lynn said she’s one of the only women out there talking about PrEP and “sexual expression.” She’s not trying to have a baby. Though she said she doesn’t tell new or casual partners that she’s on the drug, the main difference is peace of mind and not needing to know every detail about the sex life of someone she sleeps with.

PrEP is not for everyone, nor should everyone be on it, advocates say. But people at risk should have a choice. PrEP could even protect a woman who’s in an abusive relationship and isn’t able to convince her partner to use condoms. So organizations like ACT UP, AVAC, SisterLove in Atlanta, and the Bay Area Perinatal AIDS Center in California are working to raise awareness among women.

“As providers, we don’t know well which women are ‘at risk’ and vulnerable to acquiring HIV,” said Shannon Weber, director of the Bay Area Perinatal AIDS Center. Official awareness and outreach campaigns for the drug aren’t targeting family planning services like Planned Parenthood and women’s health providers. Many women already struggle to get basic reproductive health care. “For a woman to tell her PrEP story means to out her partner to her family and friends,” Weber said. Stigma against HIV-positive people keeps many women who have opted to take PrEP from talking about it.

“Some of my friends are so horrified that I’ve told everybody,” Lynn said. She keeps talking “not because I think the whole world should be taking PrEP, but I think there’s a day when people will be amazed that this conversation about PrEP was controversial.”