Nursing Clio

Ian Lekus is an LGBT Thematic Specialist for Amnesty International USA and a Lecturer in LGBT Studies at the University of Maryland. Both his advocacy and his scholarship address the intersections between grassroots social movements, political and cultural change, and sexuality and gender. He is currently finishing Queer and Present Dangers: Sexuality, Masculinity, and the Sixties, under contract with University of North Carolina Press.

The first I learned of PrEP, or pre-exposure prophylaxis, came from the signs and postcards around Fenway Health, Boston’s LGBT community health center.  Those advertisements appeared as Fenway served as one of two U.S. research sites for PrEP, in advance of the U.S. Food and Drug Administration approving Truvada in July 2012 as the first drug deemed safe and effective for reducing the risk of HIV transmission.[1]

As I started learning more, I quickly discovered how its advocates frequently compare PrEP to oral contraceptives. One PrEP researcher I consulted with early on in my investigations explicitly drew the parallel to her decision to use the Pill a few years earlier. Some of the similarities jump out immediately: for example, like oral contraceptives, PrEP — a pill taken daily to prevent HIV infection — separates prevention from the act of sexual intercourse itself.

Damon Jacobs, a licensed therapist in New York who founded the PrEP Facts Facebook group, noted how PrEP provides the first method of HIV prevention fully under control of receptive partners. Recalling “how women gained control over their bodies, over their vaginas and ovaries, the sense of empowerment that came from that,” he explained how taking PrEP, he feels “more in control of my fate.”[2]

At times, the comparisons almost write themselves: witness Elizabeth Linden, the schoolteacher recalling her “peace of mind” after starting the Pill in 1960, knowing she would avoid an unaffordable and unwanted pregnancy, and Eric McCulley, the Atlanta resident who explained to a reporter in May 2014 that “I have peace of mind. I feel like I’ve taken responsibility for my health.”[3]

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Coming of age in the plague years of the 1980s, I could hardly imagine — who could? — that the arrival of a pill that prevented HIV infection would generate such controversy within gay male communities. Loud, pointed critiques of multinational pharmaceutical corporations, sure, I could easily expect that: when I teach HIV/AIDS: Politics, Culture, and Science to undergraduates born barely before the 1996 arrival of effective antiretroviral medications, my students learn plenty about the roles of pharmaceutical giants and grassroots protest over the course of the epidemic.

But I did not anticipate a surge of hostility towards PrEP and its early adopters, especially given the urgency of developing multiple HIV prevention strategies that acknowledge falling rates of condom usage among men who have sex with men. In May, pioneering AIDS activist Larry Kramer condemned PrEP, declaring “There’s something cowardly to me about taking Truvada instead of using a condom.” More critics, from the blogosphere to gay social networking apps, have shamed PrEP users as promiscuous, as irresponsible – even as “Truvada whores.”[4]

Perhaps, though, my historical training should have prepared me for such a backlash, given the public discourse surrounding the development of the Pill half a century ago.

Elaine Tyler May, in her history of the Pill, recalled how as a child, reporters swarmed around her father, Edward Tyler, a researcher testing the oral contraceptive at his private practice. “Would the pill make women promiscuous?,” they asked. He insisted that it would not. But while he disapproved of premarital sex, he believed that unmarried women would have sex with or without the Pill, and hoped the new contraceptive would reduce unwanted pregnancies.[5]

Other pioneering birth control researchers openly scorned unmarried people, especially women, who might turn to the Pill. John Rock, an obstetrician and gynecologist, and one of the Pill’s most prominent proponents, declared that, “any high school kid can get other contraceptives and probably knows about Saran Wrap.” Such means of birth control were available “for naughty little girls who want to use them.”[6]

Pill manufacturers, citing “female forgetfulness,” questioned the ability to stick to an adherence regimen, “heightening alarm about the very problem they claimed to solve,” noted Andrea Tone in her history of contraceptives in the U.S.[7] Other commentators offered more measured perspectives: praising the Pill for its effectiveness; questioning its cost (especially for those “millions in Asia, Latin America, and Africa who are most in need of family planning”); and noting that “even the poorest [women], with little or no schooling, are found to be faithful and conscientious users.”[8]

Very similar concerns about adherence and promiscuity shape much of the backlash against PrEP – perhaps most infamously the description of Truvada as a “party drug” by Michael Weinstein, president of the Los Angeles-based AIDS Health Care Foundation. Coming under widespread fire from HIV researchers, doctors, and other health care professionals for stigmatizing PrEP users, Weinstein defended his comments by claiming that the loudest of his critics were “all associated with bareback porn, which kind of makes my point that it’s a party drug.”

In May, the Centers for Disease Control threw its weight behind PrEP, endorsing daily use of Truvada by persons at substantial risk of HIV infection. In early July, Governor Andrew Cuomo made providing access to PrEP a core plank of his ambitious plan to end the AIDS epidemic in New York State.

Not long after, the World Health Organization updated its HIV prevention guidelines, declaring that

For the first time, WHO strongly recommends men who have sex with men consider taking antiretroviral medicines as an additional method of preventing HIV infection (pre-exposure prophylaxis) alongside the use of condoms. Rates of HIV infection among men who have sex with men remain high almost everywhere and new prevention options are urgently needed.

At this summer’s International AIDS Conference in Melbourne, Australia, PrEP researchers reported that of those 1600 study participants whose blood samples reflected taking Truvada four or more days per week, zero acquired HIV. In response to the growing support for PrEP among public health officials, AHF launched an advertising campaign questioning Truvada’s efficacy as a prevention tool, pointing to the widely disparate rates of adherence in PrEP studies. Weinstein further declared that, “the government-sanctioned widespread scale-up of PrEP appears to be a public health disaster in the making.”

In contrast, Jim Pickett, Director of Prevention Advocacy and Gay Men’s Health at the AIDS Foundation of Chicago, explained recently that, “We know that people who did take the drug had very high levels of protection … This drug works extraordinarily well to prevent HIV if you use it.” In another interview, Pickett declared himself a “prevention whore,” arguing that

This one technology, PrEP, isn’t going to work for everybody, just like oral contraceptives aren’t for everyone. With contraceptives, there’s a deep bench of options; we want that for prevention. We need rectal microbicides, vaginal rings, injectables, a buffet of things for people to choose from, so people can have the kind of sex they want.[9]

The slur of “Truvada whores,” the language of “party drugs” equating PrEP with crystal meth and ecstasy, the pointed skepticism whether gay men can maintain a drug regimen all echo the debates that accompanied the development of the Pill. Reading AHF’s advertisements today, one could easily imagine a response that substitutes “HIV prevention” into Planned Parenthood’s 1962 position that “any method of birth control is more effective than no method, and the most effective method is the one the couple will use with the greatest consistency.”[10]

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In no small irony, today’s debates about PrEP frequently ignore women. This is despite data showing that, as of March 2013, 48% of PrEP users are female, and despite recent findings demonstrating high PrEP adherence rates among HIV- women looking to conceive with their HIV+ male partners. Jim Pickett, noting women’s absence from this discourse, rhetorically asked, “Who can shame about wanting to have babies? But if you’re a single gay man looking to mingle, shame on you.”[11]

One could reasonably add the silences around pleasure within serodiscordant couples (that is, where one partner is infected with HIV and the other is not), whether heterosexual or homosexual, to Pickett’s analysis of PrEP and shaming. Perhaps the greater irony then lies in how despite the fact that one pill prevents contraception and the other can facilitate it, the narratives of empowerment and peace of mind, of adherence and promiscuity are so very consistent across the span of five decades.

In her history of oral contraceptives, Elizabeth Watkins outlined the long-term impact of the Pill — legacies that remain just as trenchant today. She argued that

women who requested oral contraceptives from their physicians became more active participants in their medical care and in so doing ultimately helped shift the balance of power in the traditional doctor-patient relationship. … Oral contraceptives also played a role in the increasing ‘medicalization’ of women’s health care and the growing critique of medicine in the late 1960s [and] as a catalyst for the growth of the women’s health movement.[12]

Acknowledged or not, PrEP users — and for that matter, three decades-plus of HIV/AIDS activism — build directly on how the Pill’s early adopters challenged the presumed omniscience of medical authorities. The experiences of the Pill’s first users also remind us to keep a critical eye trained on those institutions and narratives that circumscribe the quest for balancing health, desire, and autonomy.

Notes

[1] Truvada, a combination of two antiretroviral drugs (emtricitabine and tenofovir) manufactured by Gilead, had previously received approval in 2004 to treat HIV infection, and remains one of the most widely prescribed HIV medications currently in use.

[2] Damon Jacobs, interview with the author, May 23, 2014.

[3] Andrea Tone, Desires and Devices: A History of Contraceptives in America (New York: Hill & Wang, 2001), p. 233. “Elizabeth Linden” is a pseudonym.

[4] David Duran, whose “Truvada Whores?” essay in the Huffington Post brought the term into common use, later changed his mind and publicly endorsed PrEP. See Duran, “An Evolved Opinion on Truvada,” Huffington Post, March 27, 2014, available at http://www.huffingtonpost.com/david-duran/truvadawhore-an-evolved-o_b_5030285.html.

[5] Elaine Tyler May, America and The Pill: A History of Promise, Peril, and Liberation (New York: Basic Books, 2010), pp. 7-8.

[6] May, America and The Pill, p. 81.

[7] Tone, Desires and Devices, p. 258.

[8] Elizabeth Siegel Watkins, On the Pill: A Social History of Oral Contraceptives (Baltimore, Md.: The Johns Hopkins University Press, 1998), p. 48.

[9] Jim Pickett, interview with the author, May 22, 2014.

[10] Watkins, On the Pill, p. 40.

[11] Jim Pickett, interview with the author, May 22, 2014.

[12] Watkins, On the Pill, p. 3.

Featured image: Truvada, 2012. Licensed CC BY-SA by Jeffrey Beall.