Did you know that you can take a drug to reduce your risk of getting HIV? If you’re a gay man, you’ve probably heard of it. It’s a daily regimen called PrEP, or pre-exposure prophylaxis. Maybe you’ve even seen ads for it on BART trains or clinic brochures, usually targeting men who sleep with other men.
But PrEP doesn’t only benefit men, and some women and trans folks are wondering why a drug that could potentially save their lives hasn’t been aggressively promoted in their communities.
Tamia Green lives with her seven-year old daughter in West Oakland. “I give her medicine like everyday so that she won’t get sick. She has asthma, eczema, allergies, all types of stuff,” Green says, “And something just clicked – why can’t I do that for myself?”
Green’s in a monogamous relationship and takes a pill called PrEP once a day to prevent HIV. She says it wasn’t a small matter to start taking it last September.
“It was a very big decision,” Green says, “For the simple fact that, you hear the stipulations of, they’re going to give you HIV, you’re going to die, you’re in this study, you’re part of an experiment – why would you do that? Something’s going to happen to you.”
The history of unethical medical experimentation on African Americans can make pushing a new drug into the community challenging. People are suspicious. At the same time, among women, African Americans have the highest rates of HIV.
Green does community PrEP outreach. Basically, she talks to friends, family, and strangers about the drug. She thinks that women respond differently to PrEP than men.
“Because when I talk to women, I think some women are shy. Some women don’t know how to approach the situation. Some people feel kind of like, do they have that right?” Green says.
PrEP contains Truvada, a drug also used to treat HIV. It can reduce the risk of contracting the disease from sex by 90 percent. But early on, it wasn’t entirely clear whether PrEP was as useful for females. The first PrEP study that showed the drug to be effective was published in 2010, but it focused solely on gay males. The studies on females didn’t come out until 2011 and 2012, and had mixed results.
Alan McCord is director of education at the HIV organization Project Inform in San Francisco. “So what you ended up having was several different studies in women – heterosexual women – three of which did not quite show efficacy, one that showed significant efficacy, and what do you do with that data then?” he explains.
Plus, HIV isn’t as prevalent among women as gay males, says McCord. So even though the CDC estimates that almost 500,000 heterosexual women in the U.S. could benefit from PrEP, about the same number as gay men, most outreach has focused on gay males.
PrEP outreach to women – one person at a time
To get women on PrEP, health providers and educators need to openly talk to women about it. But women also have to be willing to try it.
Diamond Electra Star (whose real name is Mackil Taylor) takes out her PrEP pills from her purse, and puts them on her desk. She lives in San Francisco, works at Zuckerberg San Francisco General Hospital as an orderly, and is studying to pass her GED.
She’s been on PrEP for over a year. Diamond’s also done sex work, and didn’t want to put herself or her clients at risk.
“I don’t call my clients ‘tricks.’ And the reason why is, a trick is someone you’re tricking,” Diamond says, “No. This man knows everything about me. When I get in his car, he knows what’s up.”
The HIVE clinic at the University of California in San Francisco works to get at-risk women on PrEP. That’s where Diamond connected with HIVE director Shannon Weber. They had actually met once before.
“And it was through a pride gathering,” Diamond laughs, “We sat next to each other. Come to find out, flashback! I petted her on her leg.”
Though the FDA approved Truvada for HIV pre-exposure use in 2012, Weber first became interested in PrEP six years earlier.
“I realized that, if not all people had access to PrEP, women certainly wouldn’t. Because even from early on in the U.S., women were left out of the PrEP conversation,” Weber says.
She’s worked in women’s health for a long time. “One of my passions is helping HIV affected couples to have babies,” she says, “The possibility of using PrEP really expanded those options for couples.”
Weber says that the drug may be helpful for many types of women: those who have a known HIV positive male partner, partners of unknown status, or multiple partners. But getting women on PrEP is not easy.
“One, women don’t know about PrEP; when women find out that PrEP works for them they’re angry that they don’t know about it. Two, we know generally about women, that we’re not always good at knowing when we’re vulnerable to HIV,” Weber says.
Diamond started taking PrEP after she had unprotected sex with a boyfriend. She didn’t know his status, so she panicked and rushed to a local clinic, where they gave her post-exposure HIV medication. She was reluctant to go back to her sex work.
“‘Cause I’m working the streets also,” Diamond says, “I do have a conscience. These people have a family, these people have a life, these people have kids, these people have a wife. If you mess up these people's lives, that’s messing up your life, because that’s hurting your pocket. ‘Til you flat broke, and you off the block.”
After a few months of tests, Diamond found out she was clean. But she realized the risk she was taking. At the San Francisco AIDS Foundation, she kept hearing about PrEP.
“So I got so tired of hearing about it, I said, okay. I’m in, right now. I’m signing up,” Diamond says.
At Lifelong Clinic in Oakland, there’s an ongoing study looking at how willing women are to take the drug. Kimberly Koester, at the UCSF Center for AIDS Prevention Studies, is one of the researchers. She says getting women to participate has not been simple.
“It’s taking us a long time to enroll fifty women,” says Koester. “We were hoping to be fully enrolled by December 2016.”
But Koester says that’s part of the study question – will women actually be receptive?
A growing army of advocates
Diamond Electra Star, who no longer works the streets, is now a patient advocate, and says she’ll share her experiences with anyone who asks.
“I show my pills to everyone. I’m not ashamed. When I’m at school, I put my meds right on my desk,” she says.
Even though the project that paid Tamia Green for her outreach work has lost funding, she says she still plans to continue her outreach -- on her own time -- to help reduce stigma around the drug.
“I think it’s just about protecting yourself, and knowing that you’re worth it, and that it’s ok, and not to be ashamed if you’re taking a pill to help better yourself,” Green says.
Public awareness about PrEP is gradually increasing. In December, San Francisco hosted the first national PrEP summit, and outreach is now extending towards women and trans individuals.
As research and education improves, women will share their own sexual health stories with their friends and loved ones. And slowly, PrEP may just become part of the conversation.
To find a provider near you, you can search at www.PleasePrEPme.org. There’s also a helpful Facebook group called “PrEP Facts: Women’s Sexuality and HIV Prevention.”