In 2012, the Food and Drug Administration approved Truvada, the first and only preventative HIV/AIDS pill to be sold legally in the United States. It is not a cure. At best, it is a supplement to safe-sex practices. And as with many new and experimental treatments, side effects are being discovered through trial and error. But when taken daily, Truvada can reduce the possibility of HIV infection by at least 92 percent.*
For self-described “Truvada Whores,” the new drug represents the possibility of sexual autonomy, an opportunity to push against the normative model of the nuclear queer family—and against certain LGBTQ leaders who have scolded Truvada advocates.
In fact, Truvada represents no threat to the nuclear queer family. It can safeguard all relationships, including those of mixed-status partners who fit the mold of a normal family unit in all other respects. To be nuclear, many queers feel, is to be respectably inconspicuous, a perfect mirror of their straight counterparts; Truvada, then, is both a blessing and something rather political. Like birth control, Truvada foils the restrictions of cultural norms—it is a means to sexual autonomy, and, yes, perhaps even to promiscuity—but it is also natural ally of family planning. Truvada has become a flashpoint in the fight against assimilation, opening up racial and generational divides within the LGBTQ community that are arguably more economic than cultural. We should not fault Truvada for promising sexual autonomy and family stability, but we should note its position in a much grander hypocrisy of class: Although Truvada’s stigma is waning (especially with the media-spin capacities of the Human Rights Coalition behind it), wealth inequality is holding steady, and not enough people can even afford the drug.
For those who are most in need of pre-exposure prophylaxis (PrEP), Truvada is a reminder of the health care they still don’t have. I will not remember where I was when Obergefell was decided, but I will remember where I was when the Affordable Care Act passed—when I learned that I would be able to stay on my parents’ health care plan, which covers Truvada, until I hit 26.
Free love is valuable, but social welfare is a right. And so it is exceedingly tone-deaf to rally for the former while taking the latter for granted. On the road to mainstream acceptance, we have largely avoided discussing inequality. And so the expression of sexual identity continues to hinge on a service or good to be bought and sold, and the stability of family and community means the trappings of a conventional, middle- to upper-class lifestyle.
Acknowledging far-reaching effects of economic equality used to be more important among LBTQ activists. In the mid-1980s the LGBTQ community joined the vanguard in the fight for economic rights. Forged in the crucible of the AIDS epidemic, the AIDS Coalition to Unleash Power (ACT UP) movement not only mobilized previously ignored communities but delivered innovative agit-prop, developing a culturally resonant argument for socialized medicine. It adopted the decidedly un-sexy slogan “health care is a right.” ACT UP was special: It brought together a community at once denigrated and envied for its private perversions, and it offered a natural entry-point into the fight for the re-distribution of wealth, goods, and services. Today, we need to revive this call. A structural solution to economic equality is of great concern to the LGBTQ community.
Truvada will no doubt change lives for the better. For instance, sex workers might find Truvada lifesaving for both themselves and clients, were it not so unaffordable. The platforms endorsed by two LGBTQ leaders in particular—Larry Kramer and Michael Weinstein*—endanger the sex worker’s ability to make a living without undue risk to their livelihood. These detractors are upset because Truvada offers a degree of hope and autonomy to people in their private lives, liberties that some veterans of the AIDS movement feel are undeserved. Weinstein, president of the AIDS Healthcare Foundation, has called Truvada a “party drug” that gives false security to a new generation untouched by the trauma of the 1980s and ’90s, and therefore naïve about the risks of sex without a condom.
Weinstein’s reaction is shared by Kramer, a founding member of the Gay Men’s Health Crisis Center and a founding member of ACT UP, who told the New York Times last year:
“Anybody who voluntarily takes an antiviral every day has got to have rocks in their heads. There’s something to me cowardly about taking Truvada instead of using a condom. You’re taking a drug that is poison to you, and it has lessened your energy to fight, to get involved, to do anything.”
Kramer’s words are strange—stranger even than Weinstein’s puritanism. He resembles a radical turned conservative born-again. More troubling is how both Weinstein and Kramer piggyback on the pious language of individual responsibility. In the case of Weinstein, it is simply illogical: This prioritization of private discipline over public welfare is a tragic, perverse response to the state’s failure to provide essential services and the private pharmaceutical market’s inability to deliver affordable drugs.
I would understand Kramer if he more clearly couched his words in his long-running distrust of the pharmaceutical industry. He made a name for himself by demanding a public response to the AIDS epidemic. Let’s talk about universal health care, which arguably would force pharmaceutical producers to care more for the future well-being of patients. Let’s talk about reforming patent law, with an eye to loosening one company’s (Gilead Sciences) monopoly on the pill. Truvada is currently priced at $1,500 per month, and Larry Kramer seems more concerned with scolding its consumption than regulating its production.
Kramer’s political history is much richer than the Times interview would suggest. It begins with ACT UP, which argued that an LGBTQ-friendly pharmaceutical industry does not necessarily solve the real barrier to access—i.e., the structural economic exploitation of inequality that undergirds health care in this country. Trumpeting free-market solutions to access allows companies to thrive like parasites on the economic divides that have perpetually haunted the fight for queer liberation and sexual sovereignty.
In 1987, ACT UP carried out its first demonstration: an occupation of Wall Street. The action called attention to the prohibitive cost of a new drug called AZT, which had been shown to ameliorate the symptoms of HIV and AIDS, while decrying the drug’s profiteers. In the early years of the crisis, there was fear that those infected with AIDS would be rounded up and quarantined, a policy that polled positively with 50 percent of respondents in a survey conducted by the Los Angeles Times in 1985 (15 percent said that AIDS victims should be tattooed to indicate their contamination). It was easier to blame and punish the victims of a political crisis rather than address its roots. The threat of quarantine was the most horrifying example of how the sanctity of the private sphere is expendable when it comes to the judgment of sex and sexuality.
The demands of activists grew, as did the complex intersection of communities involved (LGBTQ folk, people of color, low-income and working-class Americans, feminists). They called attention to the criminal apathy of the FDA and the bigoted negligence of medical practitioners, whose prejudices were validated by a frightened public.
Without an emphasis on equal access and a democratization of the means by which drugs are developed and produced, the language of AIDS activism can be hijacked by the language of consumer autonomy, which uplifts only some members of the LGBTQ community.
Many of the affected came to ACT UP, frustrated with the government’s unwillingness to release experimental drugs, only to discover the extent of private pharmaceutical companies’ influence over public institutions. Before the crisis, President Reagan’s paeans to the private sector may have appealed to some members of the LGBTQ community—after all, when had the public sphere been kind to them? But once the crisis hit, it was clear that the private sector’s inability to respond overshadowed its allure to anyone afflicted or at-risk. This realization shattered the fantasy of consumer rights; even those who were able to receive treatments now found themselves price-gouged by Big Pharma. This moment bridged racially charged class divides, as elite Wall Street traders found themselves in arms with marginalized sex workers. One activist would later describe the movement as “a combination of people who suddenly realized their bodies didn’t matter in the way that they had come to expect, with those for whom that has always been the case.”
But class tensions lived on in the ideological differences over the movement’s priorities. It was clear that there were some who were primarily concerned with consumer autonomy which only made sense for those with means, who could most likely afford the next pharmaceutical cure when the long-term side-effects of this or that drug would be made apparent. This is perhaps why Kramer continues to see drugs like Truvada as “poison”: He knows that, unless forced to, companies like Gilead Sciences will be encouraged to underfund research trials and generally cut corners in attempt to make us feel safe in the immediate moment.
An old episode of CrossFire, featuring one of ACT UP’s most visible members, Peter Staley, demonstrates the ideological divides created by disparate class experiences. On the episode, Staley is sandwiched between Pat Buchanan and Democrat Tom Braden—a political pundit whose name I could not hear in the video clip, but whose floating head was anchored with the tagline “DEMOCRAT.” The program begins with Staley defending his position to “THE DEMOCRAT,” whose condescension is representative of the tone-deaf paternalism that characterized the FDA of the 1990s. I was shocked when Buchanan, the paradigmatic paleoconservative, came to Staley’s defense: “Mr. Staley, this is going to astonish you, but I agree with you 100 percent. I think if someone’s got AIDS and someone wants to take a drug, it’s their life, and if they get some hope they ought to be able to take it.”
Tensions came to a head after a small group of activists, one of ACT UP’s many “affinity groups,” won entry into the upper echelon of the medical establishment. They did so by immersing themselves in antiretroviral studies, becoming experts in their own condition, and fiercely campaigning for being included in the research process. For the first time, HIV-positive people were part of the decision-making bodies that oversaw drug tests—though certainly not the pricing of the final product. In turn, many within the movement’s grassroots base felt alienated by the small, mostly white group that came to advise the medical establishment—pink-washing the pharmaceutical industry in the process. But the backlash against Truvada overcorrects for such pink-washing by perverting the movement’s original message. It is deeply misguided to ignore the usefulness of these new developments regardless of reasonable concerns over the commodification of HIV/AIDS medication.
Today, working-class and low-income people, predominantly people of color, are excluded from a crucial sector of the pharmaceutical industry that directly serves to LGBTQ folk. Meanwhile, public figures resort to sexual moralizing that seeks to dismiss new drugs and thus the needs of those most affected.
Kramer is perhaps the most tragic example of this dismissive reactionary impulse. Listening to his rhetoric, one gets the impression that to be queer is to be inevitably and irresponsibly bourgeois. He has become a Moses-like figure, primarily interested in chiding us for worshiping the false idol of “Big Pharma” when the priority should be advocating for an emancipatory health-care system. As ACT UP has taught us, Truvada and its successors must be part of a larger plan in the struggle to define health as social right.
*Update — August 19, 2015: An earlier version of this article stated that Truvada can reduce the possibility of HIV infection by 92 percent. In fact, studies show that Truvada reduces the possibility of HIV infection by at least 92 percent. Michael Weinstein's name has also been corrected.