Nurse practitioner Carol Priest has dedicated her career to women's sexual health. At 63, Priest, a nurse practitioner in Pittsburgh, Pennsylvania, has led infectious disease clinical trials, counseled countless women and teenagers about contraception and generally looked out for their sexual health.
Today, Priest works with the Allegheny County Public Health Department, and it's a weekly occurrence that a young African American man is diagnosed with HIV. Her heart clinches every time. Her goal, she said, is to stop new diagnoses in their tracks with the latest tool, pre-exposure prophylaxis (PrEP).
"I always try to refer them to the two or three physicians I know who prescribe PrEP," said Priest, referring to Truvada, the tenofovir/emtricitabine combination pill approved for HIV prevention by the Food and Drug Administration.
When it comes to young women, though, PrEP isn't at the top of Priest's mind, even though she knows that many women are having sex with some of the same young men.
"I haven't actually had that conversation," about PrEP with young women, she said. After a pause, she added, "I probably would."
Priest is not purposefully avoiding talking to women about PrEP -- it just doesn't rank as high as pregnancy prevention and other health needs, she said. And in having this perception, she's apparently not alone.
When asked recently, fewer than half of providers familiar with PrEP said they would be willing to prescribe it to heterosexuals or injection drug users, even though the U.S. Centers for Disease Control and Prevention (CDC) recommend PrEP for up to 115,000 people who inject drugs and 624,000 heterosexuals at high risk for HIV. Over 460,000 of those are women.
Prescribing blind spots could be attributed to lots of causes, but some people are fighting for more education and greater PrEP outreach beyond men who have sex with men (MSM).
"It's been a very interesting thing with PrEP," said Leah Adams, a postdoctoral fellow at the Group Health Research Institute in Seattle and lead author of the "AIDS Care" survey. "In some ways I think we've returned back to the idea that this is something for men who have sex with men."
In June 2014, Adams was hopeful. The previous month, the CDC had released its PrEP guidelines, which listed three primary groups as good candidates for PrEP: MSM, heterosexuals and people who inject drugs. Heterosexuals were included in this list twice, once under the general header of people at substantial risk for HIV and again as people in mixed-HIV-status couples that plan to conceive a child.
Other surveys showed that very few doctors were familiar with PrEP. Even as recently as this year, a study in the journal Contraception found that only slightly more than one in three family planning providers could correctly explain what PrEP was or explain its efficacy. But when Adams put together her survey, she went to people who, arguably, should know the most about PrEP. Adams and her colleagues sent their survey to the 3,484 members of the American Academy of HIV Medicine (AAHIVM).
When they analyzed the 363 responses they got back, she was surprised.
"Other surveys had asked blanket statements about willingness to prescribe PrEP and had found about an 80% willingness," she said. "But that seems to be [a willingness to prescribe] to a very specific kind of patient."
That patient, at least according to Adams' survey, is a gay man with an HIV-positive partner. Seventy-eight percent of providers said they'd prescribe PrEP to him. That was closely followed by willingness to prescribe to gay men with partners at high risk for HIV, and then all other categories of gay men: men with sexually transmitted infections, men who don't always use condoms, men with partners whose HIV status is unknown.
"For [heterosexuals and injection drug users], the answers didn't break the 50% barrier in terms of willingness to prescribe," she said. "And these are all providers who are members of AAHIVM. . . . These are the providers who are theoretically most in the know, and the people most likely to endorse PrEP."
A Clear Picture
It's hard to tell why providers hesitate to prescribe outside the gay community, though. It could be that AAHIVM members are aware that researchers halted the VOICE and FEM-PrEP trials of Truvada in women, and take that to mean that PrEP doesn't work in them (the Partners PrEP study showed that women were willing to take Truvada, and when they did, it effectively protected them from HIV).
It could also be that a recent modeling study out of the University of North Carolina, which predicts that women would need to take Truvada six days a week to achieve protection from vaginal HIV exposure, has providers worried about how effective PrEP could really be for women.
Or, she said, it could be an unintended consequence of activism for HIV funding and a cure that creates "a clear picture in our mind" of who is at risk for HIV: gay men, and gay men alone.
That perception -- that women, in particular, aren't at risk for HIV -- has existed for a long time. Back in 1990, when Nancy Duncan's body was wracked with chills and coughs, and she couldn't catch her breath, she went to her general practitioner, an older man, and asked him for an HIV test. She knew it was possible she'd been exposed to it. But he didn't think so.
"He looked at me like, 'Really? Why do you want that?' He thought I was out of my mind that I could be HIV positive," said Duncan. "He blew it off."
But she was HIV-positive. Today, Duncan does PrEP outreach through Planned Parenthood of Nassau County and finds that few women know about it.
This may be in part because of the numbers. Though the CDC estimates that 468,000 women could be good candidates for PrEP -- a number that approaches the CDC's estimates for gay men at 492,000 -- the number of cisgender women in the U.S. is, of course, far higher than the number of gay men. That's less than half a percent of the female population. So it's unlikely many providers have talked to a woman about HIV risk.
Am I at Risk?
It's not just that providers don't think of women when they think of HIV risk. Women themselves often don't see themselves as at risk. In 2012, Judith Auerbach at UC San Francisco conducted focus groups with women about PrEP. At the time, only five of the 92 "high risk" women who took part knew what PrEP was. When asked who would be a good candidate for it, the women initially named sex workers, young women and women who were "promiscuous." Monogamy, they seemed to think, could protect them.
But it doesn't. Gender and power dynamics don't always afford women the ability to negotiate condom use, and women don't always know that their partners are monogamous. Even if a partner is monogamous, if a woman is dating in a community without health care access and with high rates of undiagnosed and untreated HIV, she are more likely to date someone who has HIV and doesn't know it. And she's more likely to get HIV. This is especially true for African-American women, who are the most at-risk group after gay men, with an HIV acquisition rate 20 times that of white women.
"If a black woman has sex with one black man, and a white woman has sex with one white man, the chance that that black man is infected is just much higher," said Charlene Flash, M.D., an infectious disease doctor in Houston who runs a PrEP clinic. "And that means that a black woman's HIV risk is higher."
So monogamy may not protect women, even if they don't know it. Anna Forbes learned this the hard way. During a late night in 1991, Forbes was working at an AIDS service organization when the phone rang. She picked it up, and was hit by a stream of invective.
"This woman in South Philly -- a white woman, middle class, someone you would think of as completely low risk for HIV -- screamed, 'You lied to me!'" said Forbes, who is a longtime HIV prevention and women's health advocate and staff member of the U.S. Women and PrEP Working Group. "We'd told her to use condoms and be monogamous and she'd be safe. She said, 'We don't use condoms because we're Catholic, and I'm married. But I have HIV. You lied to me!'"
Forbes paused and added, "She was right. We had lied to her. We had, because we'd held monogamy out there in terms of keeping women safe and it doesn't."
Sex (Work) and Drugs
Another old trope in the history of HIV is the idea of 'dirty AIDS' and 'clean AIDS.' As Forbes tells it, clean AIDS was when you got HIV through no fault of your own (as if HIV is something that requires the placing of blame) like a blood transfusion, or from a partner, just so long as you could demonize that partner. The same holds true for a child who was born with HIV to a mother living with HIV.
"As long as we could make her a monster," she said. "If you were 'dirty AIDS,' you got it from sex or drugs."
Sex -- the selling of sex -- and drugs seem to be two communities where providers still hesitate to prescribe PrEP.
Sex work, in particular, gets very little attention from the CDC. While South Africa recently announced that it would make PrEP available to all sex workers in that country, sex workers are not included in the U.S. National HIV/AIDS Strategy. They are only mentioned in the 2014 CDC PrEP guidelines in terms of research done on PrEP's effectiveness.
Forbes, who wrote a breakdown of sex workers and access to PrEP for RH Reality Check, said PrEP ought to be available to sex workers, but not required. Again, it's a case of unintended consequences.
"You have to be careful about how you educate the public about PrEP and sex workers," she said. "What happens when clients start saying, 'I don't have to wear a condom because you're taking that pill?' It puts sex workers in a difficult position. It would be another case of slapping a Band-Aid on a much more complicated and difficult situation."
Empowering, Decriminalizing, Reducing Risk
Making PrEP available to sex workers without also decriminalizing sex work is unlikely to really reduce risk, said Forbes.
She emphasized, "Reducing risks has to do with empowering people and asking them what they want to do and how they want to do it."
Unlike sex workers, injection drug users are recommended for PrEP by the CDC. And while provider hesitance to prescribe PrEP to injection drug users is concerning, it seems that PrEP may not yet be a high priority within this community. The International Network of People Who Use Drugs (INPUD) recently released a report called, "Pre-Exposure Prophylaxis for People Who Inject Drugs: Community Voices on Pros, Cons, and Concerns." In it, about 75 people from 33 countries reviewed information about PrEP and shared their reactions. In general, the response was that PrEP seemed like a good option for reducing sexual transmission of HIV, but not transmissions through injection drug use; moreover, it didn't seem feasible in the context of drug criminalization.
Laura Thomas, M.P.H., M.P.P., deputy state director of the California Drug Policy Alliance, said that PrEP for people who inject drugs is simple and complex at the same time.
"On the one hand, access to PrEP is not complicated at all and everyone should be able to have access to PrEP," she said. "The more complicated piece is really about listening to what people who inject drugs are saying, and involving them in all HIV interventions that are effective and making sure that, when we're looking at a situation of limited resources, that we're prioritizing things that work best."
And by "things that work best," Thomas means syringe exchange. Until recently, Congress banned the use of federal funds for syringe exchange, and it's still highly politicized -- and stigmatized -- in much of the U.S.
But in terms of interventions that work best to prevent HIV in people who inject drugs, syringe exchange probably offers a bigger bang for the buck than PrEP, she said.
"There are a lot of structural issues that we need to address for people who inject drugs if we're going to get to zero with the HIV epidemic," she said. "There's the stigma of the criminalization of drug use and the structural racism of drug prohibition and the way that affects people who use drugs. [To get there, we need to be talking about] big-picture issues, like decriminalizing drug use, reducing stigma, and increasing access to treatment and syringes."
Funding the Fight
What seems clear is that many providers, like Priest in Pittsburgh, aren't necessarily against prescribing PrEP. But they do need more education. In another provider survey released in PLoS One last year, providers said that lack of training on PrEP protocols was second only to lack of patients requesting PrEP in the reasons keeping them from prescribing it.
In the U.S. Women and PrEP Working Group's position paper released in December 2015, the group lists seven items essential to making PrEP available to women. Among them is more research on how tenofovir and emtricitabine are metabolized in women's bodies, including how hormone replacement therapy interacts with it -- or doesn't -- in the bodies of transgender women. The group calls for more research on key populations, including sex workers and women who use drugs. And, finally, it urges financial investment in primary care provider education. That means family planning practitioners -- the same practitioners who, in the Contraception paper, were largely unfamiliar with PrEP.
Such training has worked before. Think back, again, to the early 1990s -- but this time for good news: In 1993, research showed that nevirapine [Viramune] stopped mother-to-child transmission of HIV. Within a few years, the rate of children born with HIV dropped dramatically.
It took concerted effort and money to make that happen.
"But we could do that with PrEP -- we could," said Forbes. "If we wanted to invest enough money, quickly and into the hands of the groups that need it to do cross-training with family planning providers, we could do it. There's nothing impossible about it. It's a matter of politics."