Researchers from the Centers for Disease Control and Prevention (CDC) in February published a study of HIV rates among female sex workers in the United States. The authors of the review—which was limited to female sex workers because research on genderqueer, transgender, and male sex workers in the United States is almost nonexistent—acknowledged that the prevalence of HIV in this group is high. They also noted, however, that they had little material to work with: The paper reviewed 14 studies, of which only two were done in the last decade. Thus, the authors note, “The burden of HIV among this population remains poorly understood.”

This shocking paucity of recent data is a result, in large part, of the withdrawal of federal funds for research on “prurient” topics imposed during the George W. Bush administration. That shift to the right had a chilling effect on the federal HIV response as a whole—an effect that has been most enduring with regard to sex workers. Overwhelmingly, even as federal agencies and public health organizations have taken steps to address HIV in other vulnerable populations, sex workers have been left out of the conversation. This omission is one that HIV-focused activists, at the urging of sex worker rights organizations, are starting to notice.

Most countries recognize men who have sex with men (MSM), people who inject drugs, and sex workers as their primary “key populations”—defined, in United Nations terms, as “groups of people who are more likely to be exposed to HIV… and whose engagement is critical to a successful HIV response.” The U.S. government, however, recognizes the first two, among others, as key populations, but not sex workers. Virtually no federally funded HIV prevention and care services are targeted specifically to sex workers in the United States, although, ironically, U.S. funding does support some good HIV prevention programming for sex workers overseas.

Here at home, they remain largely overlooked. The CDC’s HIV Behavioral Surveillance System (HBSS) only alludes to sex workers indirectly as a subgroup of “heterosexuals at risk of HIV infection” who “exchange sex for money or drugs”—a designation that, obviously, ignores their diversity on multiple levels.

Meanwhile, the National HIV/AIDS Strategy Update, a federal blueprint for our national response written by the Department of Health and Human Services’ Office of National AIDS Policy, mentions gay and bisexual men 35 times, youth 23 times, transgender people 19 times, people who inject drugs 18 times, and incarcerated people twice. It does not mention sex workers—as such or by any euphemism—even once.

This virtual invisibility was reflected at this year’s National HIV Prevention Conference in Atlanta, billed as the “preeminent conference for scientists, public health officials, community workers, clinicians, and persons living with HIV.” Of the hundreds of abstracts presented via panels, posters, and roundtable discussions, only four mentioned sex workers as a distinct and relevant population to consider at this conference.

At a “listening session” on the NHPC’s third day, I asked Conference Co-Chair Jonathan Mermin—the director of the CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention—about the lack of data on sex workers and HIV. He acknowledged that the CDC has not collected the kind of data on HIV vulnerability among sex workers that it collects on other key groups.

This lack of inclusion is nothing new. In 2012, when the massive bi-annual International AIDS Conference took place in Washington, D.C., many foreign attendees with sex work or drug-using histories couldn’t get U.S. visas to attend.

Four blocks away from the two adjacent luxury hotels where NHPC was held, the HIV Prevention Justice Alliance (HIV-PJA) convened a free “People’s Mobilization on the National HIV/AIDS Strategy Counter Conference.” Nearly 100 participants signed in at its meeting space—some of them unable to afford NHPC registration and some dividing their time between the two conferences.

In the middle of the NHPC’s opening plenary, AIDS Foundation of Chicago organizer Maxx Boykin walked unannounced onto the stage, along with seven other Counter Conference participants, to protest the omission of sex workers from the National HIV/AIDS Strategy Update. “At this conference we talk about getting to zero new infections and ending the epidemic,” he said, “but we will never get there without tackling sex workers’ rights.” The group left the stage to substantial applause.

In contrast to the NHPC, the Counter Conference offered a striking example of HIV-focused advocacy groups joining sex worker rights organizations to address this exclusion. In the process, the collective also examined how structural factors such as housing, gentrification, and displacement affect people’s HIV risk and their HIV prevention and treatment choices.

Rather than choosing among hundreds of presentations, Counter Conference attendees met in plenary with experts leading discussions on topics that included the intersections of HIV criminalization, mass incarceration, and the war on drugs; the barriers to reproductive and sexual health care facing youth and women living with HIV; the escalating difficulty of getting HIV prevention and care in southern states without Medicaid expansion; the links between unemployment, economic injustice, and disparities in HIV-related outcomes; the health care and quality-of-life challenges faced by transgender people; and the need to develop solidarity between HIV and sex worker rights advocates.

At the latter panel, four leaders in sex worker rights organizations recommended that HIV activists learn more about their local and state laws on sex work. Magalie Lerman, representing the Sex Workers Outreach Project, observed that “the political and social environment in the [United States] contributes to negative outcomes for people in the sex trade” in all kinds of ways.

It is not unusual, for example, for police and prosecutors to use the possession of multiple condoms as evidence of someone’s intention to sell sex. This practice has been exposed and subsequently prohibited in a few cities, but is still a common practice elsewhere. It both discourages condom use—thus heightening HIV risk—and provides another tool for unjustly arresting marginalized people, including sex workers and those profiled as sex workers, which frequently includes transgender women of color.

Lack of funding for sex worker-specific HIV prevention and outreach work is another issue where joint advocacy is needed. Lerman urged HIV-focused organizations to “deal us in on HIV prevention funding streams” and collectively demand resources to support local, peer-led empowerment programs that have proven effective in reducing HIV rates. Such projects received less than 1 percent of all HIV prevention funding worldwide in 2009, the most recent year for which data is available. Domestic data on funding for this is, of course, nonexistent.

Another high priority was staff training and program adaptations to make HIV service agencies more accessible to sex workers. Panelist Deon Haywood represented Women With a Vision, a New-Orleans based organization providing harm reduction and HIV prevention services to Black women since the 1980s. She mentioned the need to “make the people running the organization look more like the people coming through the door.” She said this could be done by hiring peer counselors with lived experience in the sex trade and ensuring that their jobs were designed with room for advancement.

Panelist Cassie Warren from Chicago’s Howard Brown Health Center, meanwhile, talked about how agencies could expand their hours, locations (using mobile van services), and strategies to reach street-based youth engaged in survival sex. While the process of investigating and resolving existing barriers to care is labor-intensive, she said, HIV-focused service providers can’t expect to engage with high-risk youth without doing such work.

Building cross-sectoral communication and trust is another major challenge. Panelist Stella Zine, founder of the peer-driven support group Scarlet Umbrella Southern Art Alliance, pointed out that sex work can be a “heavy term” for some people. She urged participants to learn how to talk about HIV and sex work carefully, using language acceptable to people who need services but do not self-identify as sex workers.  

When working with organizational partners rather than clients, on the other hand, Haywood cited a willingness to name the issues on the table explicitly—and to point out incidents where issues are misnamed or avoided—as essential to solidarity building. For example, Haywood commended the Counter Conference for bringing an explicit racial analysis to its discussions, an aspect she found missing at the NHPC.

The central theme of the session was “nothing about us without us.” Having been ignored and forcibly silenced in so many other settings, the panelists emphasized that sex worker rights advocates will partner with allies willing to ensure that sex workers are at the table whenever funding, policy, and strategy decisions affecting sex workers are under discussion.

After the sex workers panel, some of us walked back to the NHPC to attend the “listening session” mentioned above, where I raised the issue of sex worker invisibility. Dr. Mermin responded by acknowledging the gap and advised us of the CDC review published in February. He warned us, however, that this new paper would not contain the kind of key population data on sex workers that is being collected in other countries.

Indeed, the CDC’s website currently states that “there are few population-based studies of sex workers in the United States or globally” (emphasis added) due to their illegal status. In international terms, that assertion is badly outdated. A plethora of studies on sex workers and HIV have been published in the last five years, showing clearly that punitive approaches to sex work exacerbate HIV spread. Public health and rights-based approaches, on the other hand, not only reduce HIV rates substantially, but are cost-saving to boot.

Silencing groups by excluding them from pivotal conferences and omitting them in national strategic planning are forms of overt discrimination, as is simply refusing to include them accurately in population surveys. If uncounted, they do not officially exist and do not have to be served. This political decision results in an absence of much-needed evidence.

Dr. Mermin added, however, that we don’t have to wait for solid numbers or data to increase national efforts to deliver services successfully targeted to sex workers. Was he signalling a federal shift, at last, toward the public inclusion of sex workers in our national HIV response? Hard to tell—but the odds of that occurring are undoubtedly better if pressure for such inclusion escalates.