The Missing Link
In 2013, 57 percent of people living with HIV were women. So why has the media frenzy around Truvada, a drug regime that could help prevent infection, excluded them?
Earlier this month, the World Health Organization (WHO) recommended that a medication used as an HIV treatment should also be used as a preventative measure against contracting the virus. This is also known as a pre-exposure prophylaxis, or PrEP. A spate of articles debating PrEP sprung up alongside the WHO announcement: New York magazine ran a cover story with the provocative title "Sex Without Fear," declaring that Truvada, the drug regime used in PrEP, could "revolutionize gay life" by restoring a certain sense of pre-AIDS sexual freedom. (The Food and Drug Administration approved Truvada for preventative use in the United States in 2012.) Meanwhile, a POZ magazine piece by an HIV/AIDS researcher called the WHO recommendation "unhelpful," arguing that some gay men would see it as a reason to stop using condoms. A New York Times article picked apart the claim that Truvada, if used correctly, can be up to 99 percent effective, while the Wall Street Journal reported on New York Governor Andrew Cuomo’s new AIDS Eradication Plan, which includes ramping up use of Truvada.
The precise implications of the WHO recommendation are thus still unclear — but there’s no arguing that, under the right circumstances, they could be huge. If used in conjunction with condoms and taken every day, Truvada could help prevent new HIV infections among gay men, a population still deeply afflicted by the HIV/AIDS pandemic. A recent report from the U.S. Centers for Disease Control and Prevention showed that annual diagnoses of HIV in the general population have declined by one-third, but doubled among young gay and bisexual men.
Yet in this new, animated debate over Truvada, where are the women?
The WHO announcement and subsequent media coverage have focused on men who have sex with men. In 2013, however, 57 percent of all people living with HIV worldwide were women. In sub-Saharan Africa, that figure is even higher, with woman comprising 59 percent. And women in the United States aren’t spared, especially in certain communities: For instance, African American women are 15 times more likely to contract HIV than Caucasian women.
"The conversation about PrEP is dominated by white, rich, gay men from the [Global] North," said Jessica Whitbread, interim global director of the International Community of Women Living with HIV, during a panel discussion at the 2014 International AIDS Conference in Melbourne, which is taking place this week. Whitbread herself is not an advocate for PrEP, but she is concerned with what she sees as an all-too-typical exclusion or marginalization of women in matters of HIV/AIDS, sex, and reproductive health generally.
Others who think PrEP could make a difference for women see the same problems, rooted in norms, assumptions, and practices that have bedeviled the effort to protect women from HIV/AIDS for decades. They are problems that extend from the international to the highly local level.
Kenyan-based HIV researcher Dr. Nelly Mugo conducted a PrEP clinical trial on discordant heterosexual couples (that is, where one partner has HIV and the other does not), which showed promise that consistent, daily use of PrEP along with continued use of condoms could keep the uninfected partner free of HIV. But putting this into practice will be anything but easy, given how women are excluded from discussions of sex — or worse. "[Our] field was cognizant of the challenges to women and young girls when we started the trials," Mugo said in an interview. "Even in societies that are progressive, condom use in partnerships can be challenging."
Men in the African context, Mugo said, sometimes feel a woman’s desire to use a condom as a challenge to their manhood. As a result, women cite having significant difficulty negotiating use with partners. This is just one example of the ways in which many African women have little say over their sexual lives: Marriages are sometimes arranged, husbands take multiple sexual partners, polygamy is sometimes practiced, and sexual assault, including that inflicted under the guise of child marriage, and domestic violence are rampant.
In 2012, I heard and saw these problems firsthand when I visited clinics in Uganda, funded by the U.S. President’s Plan for AIDS Relief (PEPFAR). I interviewed women in a group called the National Community of Women Living with HIV/AIDS (NACWOLA). All of them had HIV, and each one said her husband had infected her. They were all experiencing stigma, some of it life-threatening, because of their diagnosis. One woman had lost custody of her child to the ex-husband who infected her. Another woman was brutally beaten by her dead husband’s family and run off the property they owned together, prior to his death.
The women I interviewed in Uganda — and others I spoke to in Cameroon — said over and over again that access to preventative reproductive health care was practically non-existent. (This included under PEPFAR-funded programs.) If not the logistics of getting to a clinic or dealing with corrupt supply chains, cultural norms often stood in their way. Mugo pointed to these problems as well: "We can’t even get women condoms," she said.
PrEP wouldn’t be immune to these barriers; use among women, for instance, would require clear channels for accessing the treatment and robust information about how to use it, which would not be easy to provide. But for now, that doesn’t matter: Last year, Uganda said it wouldn’t approve Truvada for use by anyone, based on "moral grounds." A program manager at the Ministry of Health told IRIN that PrEP would lead people to "engage in reckless sexual behavior."
To be sure, before activists and providers can wage a full-on battle against those seeking to deny any at-risk population access to PrEP, there is a drug company standing in the way. According to Mitchell Warren, executive director of the AIDS Vaccine Advocacy Coalition (AVAC), drug-maker Gilead has "dragged its feet" to get approval for Truvada in the seven countries outside the United States where clinical trials initially took place. As a result, PrEP isn’t yet available anywhere but the United States.
That said, Warren is hopeful that this will soon change. South Africa and Thailand are reportedly reviewing Gilead’s application for approval now.
At the International AIDS conference in Melbourne, I asked a Gilead representative why the company hadn’t applied for approval in more African countries. He said it was difficult negotiating with some governments, due to stigma around homosexuality and the idea that Truvada would promote promiscuity among the general population. Scaling up, in other words, will be slow going.
He emphasized that Truvada isn’t a magic bullet, but added that, for women, it could be a very valuable tool — even in the absence of condom use. "They don’t really have a choice sometimes, now do they?" he said of women, underscoring the challenges they face in using protection. Truvada alone, which would not require asking a partner to use a condom, might provide at least some protection for women in desperate situations.
Amy Corneli, a public health expert, presented research in Melbourne showing that, were they to use PrEP, some women might not use condoms.* To Corneli, this speaks to a need for more education. She said that, ultimately, women require multiple prevention options, potentially including microbicides and vaginal rings. "One size doesn’t fit all," she said.**
However, no microbicides or rings are approved for the prevention of HIV (though several are in the pipeline). Meanwhile, Truvada exists and has WHO backing. But even if it were approved throughout the world tomorrow, it would likely affect women very little. For until women and their needs are included equally in the discussion of PrEP (and HIV prevention more broadly), Truvada likely could not have the game-changing impact many people wish for it.
"PrEP is an option for many people, not only for gay men," AVAC’s Warren wrote in a recent Huffington Post article. "Oral PrEP should be integrated into comprehensive, high-impact prevention programs for all people at risk internationally, with particular attention to key populations but also for young women and married women who continue to bear the brunt of the epidemic."
*Correction, July 31, 2014: This article originally said that Amy Corneli’s research was conducted on women taking PrEP. It was not. The study was an "intentional survey," meaning that it assessed what participants might do if they were taking PrEP. The article also stated that Corneli "disagrees" with the Gilead representative quoted in the previous graf, which she did not explicitly do in her interview. (Return to reading.)
*Clarification, July 31, 2014: This article originally stated that Corneli thinks microbicides and vaginal rings might work better than PrEP. She believes women need multiple HIV prevention options, which might include PrEP, microbicides, and vaginal rings. (Return to reading.)
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