Why Don't Women Know About This Lifesaving Drug?

Illustrated by Elliot Salazar.
This article was originally published on December 1, 2015.

Three years ago, a little blue pill completely changed how I think about sex. (No, not that blue pill.) Growing up during the ‘80s and ‘90s, I was taught that having sex with other men was a potentially deadly proposition. As I got older, medical advancements and my own experience proved that this was, thankfully, no longer true. But I’m nevertheless part of a generation of gay men for whom sex has always been inseparable from a deep-seated fear of HIV. In 2012, all that changed — and it was almost impossible to believe.

PrEP (pre-exposure prophylaxis) is a daily pill regimen that’s been proven to reduce the risk of HIV infection by up to 99% when taken as directed. A combination of two existing antiretroviral drugs that have long been used in the treatment of HIV, PrEP was approved by the FDA in 2012 as an HIV prevention strategy. The results of a recent three-year study in San Francisco found zero (!) incidents of HIV infection among a group of sexually active gay men taking PrEP. The drugs have no serious side effects, and their cost — about $11,000 a year — is covered by most insurers.

In a few short years, the conversation about Truvada (the drug’s trade name) has evolved dramatically among gay men. Initially, some regarded PrEP with anxiety and skepticism, and early adopters faced slut-shaming. For men who had long considered condoms a life-saving measure, any excuse not to wear them felt irresponsible and dangerous. (The CDC recommends that men on PrEP continue to use condoms, and studies have found an increase in other STDs among the drug’s users, underscoring this need.) Still, PrEP feels like a true game-changer: Even if they don’t use these pills themselves, most sexually active gay men are likely to have a number of friends who do.

And yet, when I bring up PrEP with a female friend, more often than not, she’s never heard of it. Considering what a tremendous impact this drug has had on the gay community (and the fact that my female friends are among the smartest people I know), I started asking myself, Why aren’t more women talking about PrEP?

When I posed this question to several experts, they pointed to a number of reasons. Obviously, pregnancy and contraception are top-of-mind concerns for the vast majority of women who have sex with men. But HIV also affects the female population in huge numbers: About one in four people living with HIV in the U.S. are women, according to the CDC, and worldwide, the number is closer to half. “Particularly in the United States, it’s a challenge, because many people think of HIV still as very much a 'gay disease,' and that’s incorrect,” says Mitchell Warren, executive director of the AIDS Vaccine Advocacy Coalition.

Who are the women who stand to benefit most from PrEP? Chances are, if you’re a sexually active woman, you understand what behaviors put you more at risk — such as having unprotected sex with multiple partners. It’s true that you can’t know everything about your sex partners (even a monogamous one). But if you’ve had no reason to worry about HIV before, you likely don’t need to run and ask your doctor about taking PrEP. That said, women who fall into certain demographics stand to benefit from this drug tremendously — if only they knew it existed and could comfortably connect with knowledgeable health care providers. One of its uses is truly astounding: A woman can take Truvada to have a child with an HIV-positive partner, preventing transmission of the virus both to herself and her baby.

PrEP holds enormous potential to be a boon for women’s health — not only by preventing infection, but by empowering women to assume control over their HIV risk, in the same way contraception lets women decide if and when they wish to become pregnant. Ahead are groups of women for whom PrEP could be especially life-changing.

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Illustrated by Elliot Salazar.
African-American Women
The statistics are frightening: African-American women are 20 times more likely than white women (and nearly five times more than Latina women) to contract HIV, according to the most recent CDC statistics — a rate of infection second only to men who have sex with men. Health experts point to a number of factors, such as poor access to health care, housing, and HIV education. Stigma around getting tested is another issue, and there are demographic dynamics at play, as well. Heterosexual Black women who prefer partners of the same race “have a smaller pool of male sexual partners to choose from, because a disproportionate number of Black men are dead or incarcerated,” says Judy Auerbach, PhD, of the University of California San Francisco medical school. This leads to a greater likelihood that the men in this demographic who are available and sexually active will have multiple partners.

Yet, like most women, African-Americans have not been quick to embrace PrEP. In focus groups, Dr. Auerbach found that the majority of Black women she spoke to hadn’t heard of it. When told there is a drug to prevent HIV transmission, many of these women expressed interest and said that any woman might consider taking it, “Because you don’t know what your partner is doing,” Dr. Auerbach told BETA in 2014. But some became suspicious and asked why the drug had been withheld from them. Dr. Auerbach saw these feelings as part of a broader (and often justified) mistrust of institutional systems among African-Americans.

Experts I spoke to emphasized the need to expand the types of providers who are offering PrEP. Since someone who’s not HIV-infected isn’t likely to visit a doctor who specifically treats HIV, experts stress that it’s important for PrEP to be offered by general practitioners, clinics, family-planning docs, and any and all health care access points that women are likely to visit.
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Illustrated by Elliot Salazar.
Sex Workers
A pill that makes sex safer is an obvious win for women who engage in transactional sex. “Prior to PrEP, we really didn’t have a female-controlled HIV prevention method,” says Shannon Weber, director of UCSF's National Perinatal HIV Hotline. “You don’t have to negotiate with your partner — there’s something truly empowering about [that].”

Implementing and measuring HIV prevention strategies among sex workers is particularly challenging, because these women are marginalized by the law and face a vast array of different circumstances and priorities. High-paid “indoor” escorts who list specific rules and prices online may not consider themselves at high risk for HIV or have interest in taking PrEP. But those engaging in survival sex work, who may not be able to negotiate condom use (or have access to condoms at all), are more likely to see themselves as at-risk and embrace PrEP, says Lindsay Roth, president of the board of directors of the Sex Workers Outreach Project, a national advocacy group.

Yet the practicalities of PrEP present significant challenges among sex workers, from interacting with health care providers to covering costs. “The fact of the matter is that going to the doctor as a sex worker just sucks,” as Roth puts it. “There’s a lot sex workers don’t disclose and will never disclose to their doctors because of criminalization and stigma.” She also notes that there’s anxiety that PrEP could make demands for non-barrier-protected sex in transactional settings the norm.
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Illustrated by Elliot Salazar.
Trans Women
According to a 2012 study, trans women worldwide are nearly 50% more likely than other adults of reproductive age to be infected with HIV; in the U.S., as many as 30% of all transgender women are HIV-positive, according to another estimate. Discrimination, violence, and poor body image are cited as primary factors, as well as an increased likelihood for trans women to be anally receptive sex partners, share needles to inject hormones, and engage in sex work.

In the major clinical trial that led to PrEP’s FDA approval, the 14% of participants who were trans women had particularly low adherence rates — meaning they weren’t taking the pill often enough for it to be effective. Why? Weber speculates that sexual health may be just one of the major issues in a trans woman’s life. “For people who are balancing violence, housing instability, wondering where and how to get their feminizing hormones, that may be a greater priority than HIV prevention,” she says.

At the same time, many trans women may already make regular doctor’s visits around transitioning. So incorporating PrEP into gender-responsive settings, where these women are able to get feminizing hormones and are more likely to trust their providers, could be one key to successful implementation, Weber says. Further study is also needed to determine how PrEP may interact with hormones. “What we know so far is that PrEP is showing no clinical implications with either birth control or feminizing hormones,” Weber explains. “But we need more information.”
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Illustrated by Elliot Salazar.
Serodiscordant Couples (One HIV-Positive Partner, One HIV-Negative)
In researching PrEP use among women, one discovery stopped me in my tracks: The drug therapy allows women to conceive with an HIV-positive partner while preventing the transmission of HIV to both mother and child. How does everyone not know about this? Do people know about this?

It seems that at least some do. In data released in 2013, nearly half of all PrEP prescriptions were for women, and it’s thought that many of them were in serodiscordant couples trying to conceive naturally. But that figure has since declined significantly, as PrEP awareness has spread widely among men. According to data out of the governor’s office this week, the mother-to-child infection rate dropped to zero in New York state for the first time since the start of the AIDS epidemic. But because of the stigma associated with anybody with HIV having a family, men and women in serodiscordant couples often hesitate to disclose their desires to have children to doctors — or even to themselves, according to Weber. “We need to empower women and their partners to know that this is an option,” she says.

Educating a broader array of providers about “PrEPception” (as it’s known) is key as well, as is enabling doctors to prescribe it even if they don’t consider themselves HIV experts. “Some physicians and practitioners may feel overwhelmed or intimidated by the prescribing practices that are recommended with the provision of PrEP,” Jessica Atrio, MD, an Ob/Gyn at Montefiore Hospital in the Bronx who manages a clinic for HIV-positive women, told me. “They want to have an expert or a colleague [who is] better poised to counsel and manage those issues get involved," she continues. "I think that’s a lack of referral systems, and that’s definitely a system failure in medical institutions.”
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Illustrated by Elliot Salazar.
Women In Africa
Right now, the U.S. is the only country where PrEP is approved for HIV prevention. Expanding access to the drug in Africa and around the world is a huge priority for health care advocates — and it's no easy task. In one early trial involving HIV-negative women in Kenya, Tanzania, and South Africa, the results of people who took the drug and those who took a placebo were roughly the same, primarily because the test subjects weren’t taking the drug as directed. The results of a more recent trial with single South African women were more promising: “When the women know what they’re taking, they know they’re actually taking it, and they believe it works, and they believe in the person who introduced it to them, they’re adherent,” explained Dázon Dixon Diallo, co-chair of the U.S. Women and PrEP Working Group.

Warren told me about a “Sisters” program currently operating in Zimbabwe, in which women taking daily antiretrovirals — as a treatment for HIV or to prevent it — are paired up with each other. “They don’t know if their 'sister' who they’ve been buddied up with [is] on treatment [for HIV] or on PrEP — but they all know they’re taking a pill every day, and they help each other.” Another strategy now in play is spreading awareness of the drug before it has actually been introduced, to stimulate demand. PrEP is available in Africa from generic suppliers at a fraction of what it costs in the U.S., but only through trials and studies for now, until it wins approval from individual countries as a prevention method.

The drug’s impact in parts of the world where entire swaths of the population are marginalized is potentially huge, Warren says. On a recent trip to South Africa, he met a 23-year-old African woman who uses PrEP. “For the first time, I felt in control of my sexuality," she told him. "That is a huge statement,” Warren says. “If we had just prevented an infection, that’s great. But here’s a person who says, ‘For the first time, I felt in control.’”
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Illustrated by Elliot Salazar.
What’s Next?
When I asked experts what’s next for PrEP, they underscored that we’re only beginning to see the potential this drug holds for women’s health. Trials are underway for long-lasting injectables and vaginal rings that deliver antiretroviral therapy, negating some concerns about adherence. And the results of a new study released in The New England Journal of Medicine found that taking PrEP just before and for several days after a sexual encounter may be equally as effective as taking the pill every day, which could dramatically decrease patient costs.

A vaginal ring that delivers both PrEP and contraceptive hormones is also in development — another option that health care providers and advocates see as a significant potential advance. “Different women want different products — and even the same woman wants different products at different times in her life,” Warren says. “We need to figure out the same basket of options for women for HIV prevention, just as we have over the past 50 years for family planning.”

Nearly everyone I spoke to also underlined the importance of empowering women to share their personal experiences with PrEP — not just the successes, but the challenges as well. “We are really at this time of promise in which we can end sexual HIV transmission,” Weber told me. We just need to get the word out.
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