THE COLLEGE HILL INDEPENDENT


PrEP Failure

Drugs and stigma in the ‘post-AIDS’ era

by Mitchell Johnson

Illustration by Dorothy Windham

published November 3, 2017


content warning: homophobia, racism 

In February of this year, several media outlets picked up a story about a gay man in the Netherlands who became the third reported case of “PrEP failure.” PrEP, or Pre-Exposure Prophylaxis, is a kind of drug taken once a day to prevent HIV infection. So far, the drug has failed to prevent infection only three times since  it was approved by the FDA in 2012. The first two cases of PrEP failure occurred because of drug-resistant strains of HIV, but in the third case, the man contracted a strain of HIV that otherwise should have been prevented by a daily regimen of PrEP. 

The reporting on this event found an explanation for the man’s infection in the amount, and frequency, of his sexual partners. In an article for Jezebel, Rich Juzwiak described his sexual habits as “astounding,” listing the number of his sexual partners over the course of several months. Juzwiak went on to note the frequency with which he engaged in sex without a condom, as well as a list of the recreational drugs he used (all publicly available information, because the man was participating in a PrEP study). 

For those old enough to have read the news during the height of the AIDS epidemic in the 1980s, these descriptions might feel painfully familiar. In 1987, the publication of Randy Shilts’ book And The Band Played On: Politics, People, and the AIDS Epidemic led to a flurry of national attention on the sexual habits of Gaëtan Dugas, a French-Canadian flight attendant Shilts labeled the “patient zero” of AIDS. Shilts paints Dugas as stereotypically self-obsessed, with a “voracious sexual appetite” and a careless disregard for safety. Dugas embodied the existing cultural fears about AIDS, and his body was mobilized to confirm homophobia and xenophobia (he was said to have brought AIDS to the US from abroad) already present in discussions of the disease. After Shilts’ book, Dugas quickly became a national figure, labeled by the New York Post as “The Man Who Gave Us AIDS,” and was soon cemented as the origin story in early canonizations of the AIDS epidemic. This theory has since been debunked, but the myth, and the homophobic discourse it represents, still linger. 

In the coverage of both Dugas and the Dutch man at the center of the third case of PrEP failure, the sexual habits of individual gay men are laid out as objects of public scrutiny and matters of concern for public health. Invocations of promiscuity and hygiene converge on the bodies of two individuals, animated by the spectacle of queer sexuality. Both men’s bodies exist as archetypes, vehicles of confirmation for long-running fears and unspoken assumptions. “He’s far from the only one racking up such numbers,” the Jezebel article explains. 

The fear of “PrEP failure,” in its invocation of two groups long associated with HIV—queer people and drug users—shows the extent to which the archetype of Gaëtan Dugas still resonates in the public psyche. The advances in treatment and prevention epitomized by drugs like PrEP (available in the US as Truvada) have changed the way the disease manifests on the body. These drugs also change public representations of HIV and AIDS, recasting old stigmas in the context of pharmaceutical treatment. 

+++

Though aggregated by Jezebel, the original reporting on the third case of PrEP failure originally appeared in Poz, which offers health information, lifestyle articles, and advice on living with HIV. The coverage of “PrEP failure” appeared as a note of uncertainty in Poz’s otherwise thoroughly optimistic tone. Typical articles about PrEP are titled “PrEP Greatly Benefits Gay Men’s Sexual Health and Well-Being,” or “PrEP is Cost Effective and May Even Save Money in Many Scenarios.” Poz provides necessary health information, and works to combat stigma by portraying people with HIV in ways that highlight their agency and humanity. As the magazine itself says at the beginning of most of its issues: “Together, our stories can change the way the world sees HIV/AIDS.” If the discourse surrounding AIDS has, for the past three decades, largely centered on tragedy and hopelessness, Poz crucially reframes the narrative in ways that presume the vitality of people with HIV.

But the facts of treatment and prevention achieved through pharmaceuticals are inextricable from Poz’s goals of destigmatization. This is represented by the pages of the publication itself: full-page ads for drugs permeate the space between articles, often about the benefits of similar drugs or treatment plans. Truvada, frequently mentioned in Poz as a viable option for both the prevention and treatment of HIV, earned the pharmaceutical manufacturer Gilead over $3 billion in 2016. The magazine’s interest in promoting health aligns with the pharmaceutical industry’s interest in selling drugs. 

While Poz and the broader world of HIV public health have, for the most part, begun promoting PrEP as a crucial part of ending the epidemic, PrEP’s early years were marked by skepticism and ambivalence toward the drug. “Despite its proven efficacy as an HIV prevention strategy among men who have sex with men,” Kane Race wrote in a 2015 essay for GLQ: A Journal of Lesbian and Gay Studies, “PrEP has so far emerged as a reluctant object, partly because of its putative association with the supposed excesses of unbridled sex.” 

PrEP’s implicit promise of sex without condoms, for many public health officials and AIDS activists, appeared to negate the safer sex practices implemented by queer communities in the wake of AIDS. In a now-infamous Huffpost article from 2012, writer David Duran coined the term “Truvada Whores,” saying “for gay men who just like bareback sex, Truvada is just an excuse to do what they want to do.” PrEP is at once utopian and terrifying—promising to end the epidemic and evoking images of rampant, “risky” queer sex. 

The idea that risk-free sex without a condom was being sold for profit added to this reluctance. As a prevention medication, the market for PrEP is potentially unlimited. Regan Hoffman, the former editor-in-chief of Poz, is quoted in a 2013 New Yorker article calling PrEP “a profit-driven sex toy for rich Westerners.” 

Much of the early controversy around PrEP has dissipated. Public health initiatives now routinely highlight the benefits of PrEP—earlier this year, the Los Angeles LGBTQ Center promoted PrEP in a series of billboard ads, with bold text urging people to “F*ck w/out Fear.” Health insurers have also largely agreed to cover PrEP, under the logic that prevention is ultimately far more cost-effective than treatment. Poz, now under a new editor-in-chief, similarly promotes the drug, devoting an entire section of its website to PrEP.  

The potential of PrEP to end the AIDS epidemic has largely supplanted early fears about its potential to encourage high-risk sex. Major media outlets—PBS, CNN, the Washington Post, and others—have run stories about the tantalizing possibility that PrEP could be “the end of AIDS.” PrEP has come to represent not just one method of HIV prevention, but the possibility of an AIDS-free future. 

+++

Before Truvada was PrEP it was PEP (Post-Exposure Prophylaxis), a viral suppression drug. It existed as a treatment medication before testing revealed that it could also work to prevent infection in HIV-negative people. In 2012, it was approved for use for “treatment as prevention,” and in 2014, the Centers for Disease Control and Prevention (CDC) recommended that as many as half a million Americans—those deemed the most at risk of contracting HIV—begin taking the pill. 

Opposite PrEP, on the other side of infection, is undetectability, the point at which the HIV virus has been so suppressed through medication that it doesn’t show up on tests, and transmitting the virus is impossible. A common slogan in Poz is “Undetectable = Untransmittable.” But undetectable status is not stable: it entails the constant management and surveillance of the presence of HIV within the body. 

The regime of doctors’ visits, data gathering (PrEP prescriptions come with the requirement that one visit the doctor every three months and self-report their sexual habits), and the pill itself, characterizes both PrEP and PEP, treatment-as-prevention and treatment-as-treatment. The differences between the two become, in many ways, irrelevant. PrEP confuses the distinction between those with HIV and those without, recasting those without HIV as perennially at risk, and those with HIV as having the potential for total viral suppression. The temporality of the illness shifts, and neither drug has an endpoint. The body is at once always in danger and always managed.

Similarly, pharmaceuticals shift the space in which HIV manifests. Whereas HIV and AIDS used to define, stigmatize, and encompass the bodies that had them, pharmaceuticals reconfigure this stigma in terms of behavior and ‘risk’ rather than identity. Deviance and illness become a matter of percentages, capable of optimization. Old fears about quarantining people with HIV (even as they resurface, as in the case of a Georgia lawmaker who recently brought up this very prospect) are replaced by the logic of the undetectable: the quarantining happens inside the body. 

The Poz article about the third case of PrEP failure ends optimistically. “The good news is that the person is now doing very well on therapy,” a scientist is quoted as saying, “and his infection was caught early because he was in a PrEP program.” The spectacle of the promiscuous queer body, which featured so prominently at the beginning of the article, is replaced with the quiet respectability of the chemically managed body. The same drug that failed to prevent HIV could easily be the one now mobilized in suppressing it.

Rather than questioning the efficacy of PrEP, Poz describes the third case of PrEP failure in ways that justify the drug’s necessity. The man’s history of sex without condoms serves to prove PrEP’s implicit assumption that traditional safer sex practices for the groups most at risk of HIV are a lost cause, and that money should be spent on prevention through pharmaceuticals rather than sex education or accessible condoms. PrEP and PEP become the only viable solutions to the perceived excesses of his sex life.

+++

In 1955, the GD Searle pharmaceutical company, in conjunction with the Puerto Rican Family Planning Association, began the first large-scale test of the contraceptive pill in Puerto Rico. As explained by Paul Preciado in the book Testo Junkie, “Puerto Rico’s trials are not an exception but rather belong to a larger history of colonial and hygienicist scientific experimentation.” Racist fears surrounding the birth rates of Puerto Rican women provided the justification for these early trials. While posited as a liberatory drug for white cis women, the pill’s history is tied up in eugenics, forced sterilization, and colonization; it is a technology that emerged from logics of racial purity. 

In the early 2000s, Gilead Sciences, the pharmaceutical company that owns Truvada, conducted some of the first tests of Truvada for PrEP in Peru, Equador, Brazil, and Thailand. Tests were also conducted among sex workers in Cambodia and Cameroon, before pressure from activists forced those governments to close them.

Both PrEP and the contraceptive pill exist at the intersections of sexual health and population management. Both drugs aim to mediate sexuality, decoupling sex from its assumed result. Like the pill, which drew on ideas of racial purity, PrEP invokes notions of blood purity, protecting those who take it from what has always been a racialized disease. In 1987, after years of refusal to even speak the word AIDS, President Reagan announced plans to “determine the extent to which the AIDS virus has penetrated our society.” The racist fear of national infiltration (AIDS was, falsely, said to have originated in Africa) has always been embedded in AIDS-related fears of queer sex. HIV prevention is an important health initiative, but the ideologies behind the fear of infection should be questioned. PrEP promises the chance to “F*ck w/o Fear.” But fear of what, exactly? And whom? 

To save money, Gilead tested PrEP on communities of color in the Global South, but the drug is still primarily accessible to the white, Western populations who can afford it. These disparities exist within the US, too—as of 2015, 74 percent of Truvada prescriptions in the country went to white people, despite the fact that black, gay, and bisexual men and trans women of color remain the most likely demographics to contract HIV. In the US, PrEP can cost upward of $14,000 per year without insurance. 

To combat this disparity, government agencies, NGOs, and other public health groups attempt to bring PrEP into communities of color, framing PrEP as the solution to disproportionate rates of infection. A recent Gilead marketing campaign showed images of shirtless Mexican wrestlers lying in bed together, and black men flirting on the subway. Nearly every issue of Poz has a person of color on the front cover. Still, there remains a wide gulf between the actual consumers of PrEP and its current target-audience, between those who take it and those deemed most in need of it. A 2016 Rolling Stone article asked, “Why Aren’t HIV Prevention Pills Going to the People Who Need Them?” The people in question were, of course, people of color. Rather than discussing the structural inequality behind disproportionate rates of HIV for black and brown people, the article collapses the disparity into a single problem: the lack of PrEP.  

Despite promises of “the end of AIDS,” PrEP fails to substantively address the AIDS epidemic, with its attendant stigmas and inequalities. In a literal sense, the third case of PrEP failure reveals the ways that some individuals will always fail to fit the molds constructed by technology. Pharmaceuticals are directed objects, created from pre-existing conceptions of disease and of which affected bodies are most deserving of care. This is reflected in the chemical substance of the pill itself: a recent study found that PrEP was far less effective at preventing vaginal HIV infection. Like the 2009 scandal over an HP webcam’s inability (or refusal) to recognize black faces, or the legions of medical procedures hostile to trans people, PrEP is not a neutral technology.  

Even when the drugs technically succeed, people still fail to achieve the empowerment that HIV medications promise. Near the end of a personal essay published in Poz, Andrew Spieldenner, a queer person of color and AIDS activist, expresses ambivalence about his medications: “I am virally suppressed. I do not know if I believe I am not infectious. I don’t know if it’s just the HIV or if this is a burden carried under my ethnic skin my whole life.” His moment of failure reveals the cracks in the PrEP utopia—a utopia contingent on profit and bodily management. As new HIV medications are developed and put into place, and as scientists continue to search for something like a “gay gene” while computers claim the capability to identify “queer faces,” these technologies will inevitably fail, and there will always be people who fail them. 

MITCHELL JOHNSON B’18.5 fails, regularly.