Why Isn’t a Revolutionary HIV Medication Getting to Sex Workers?

On a crisp day in the fall of 2013, Casper,* a slender white queer man prone to wearing a slick of plum-red lipstick, visited a free walk-in health clinic in Crown Heights, Brooklyn, for a routine HIV test. Casper had moved to New York nearly two years earlier after graduating from an elite East Coast liberal arts school, and he had been doing sex work casually through Craigslist and Grindr to supplement his income ever since. He didn’t feel comfortable disclosing that during a risk-assessment questionnaire at the beginning of his visit, but he had questions of his own.

In the months prior, Casper had seen posts on Facebook from some of his gay friends about a pill that, when taken every day, could protect a healthy person from contracting HIV. Like many young gay men growing up in the mid 90s, Casper had internalized a deep fear of HIV and the injunction to always practice safe sex to protect against it. A pill that could virtually eliminate the threat of infection sounded like a miracle, especially since his work put him at a higher risk of contracting the virus. (Statistics about infection rates among sex workers are hard to come by because the criminalization and stigmatization of the profession have made population-based studies in the United States nearly impossible.) Additionally, Casper’s very first client in New York had offered more money to bareback, the slang term for having sex without a condom. He felt safe saying no, but the demand came up again and again. He was intrigued about a pill that could further allay his anxiety and also give him the flexibility to make more money if he needed it. Straight people bareback all the time, he thought, and he felt he had the same right with partners and clients if he chose. So after he peed in a cup and had his blood drawn, he asked the clinician what he had to do to get a prescription for the HIV prophylaxis. He didn’t know what it was called. The clinician gave him a confused look and told him that no such medication existed. “There’s no way that’s real,” she said, and urged him to just use condoms. “I didn’t know enough to get them to give it to me,” he said later.

But the pill was very real. It had been more than a year since the Food and Drug Administration approved the use of the drug Truvada to protect individuals at a high risk of HIV infection, a regimen known as PrEP, for pre-exposure prophylaxis. Studies of men who have sex with men have shown that, when taken every day, the pill can be 99 percent effective in preventing new infections. At the time, Truvada was primarily being marketed to gay men as a means of embracing sex without fear. The initial media coverage and public health campaign, which focused on affluent gay neighborhoods like Chelsea in New York and the Castro in San Francisco, made few efforts to reach sex workers like Casper, and many of the gay men who were identified as the drug’s ideal consumers treated the campaign with indifference and hostility. The belief that condoms are the only true protection against HIV remains strong in the gay community, and many resisted seeking prescriptions. The term “Truvada whore” became a popular slur for the pill’s early adopters.

Eight months after Casper first asked about the drug, officials at the Centers for Disease Control and Prevention, frustrated by the stubbornly high rate of new HIV cases, recommended PrEP for every American at a high risk of infection, including men who regularly have unprotected sex with men, anyone who injects drugs, and all sex workers. The next month, Governor Andrew Cuomo announced a plan to end the AIDS epidemic in New York State, aiming to reduce the number of new HIV infections annually from 3,000 last year to 750 by 2020. Facilitating access to PrEP for those at high-risk was one of the pillars of the three-point plan. “I think everyone recognizes now that PrEP is one of the cornerstones if you’re interested in driving down numbers,” said Daniel O’Connell, who, as the director of the state’s AIDS Institute, is helping to spearhead the initiative. “It offers people with a particular risk profile something other than just condoms or willpower.”

The blueprint Cuomo approved indicated a shift toward getting the drug to sex workers, specifically identifying them as part of a key at-risk population that needed greater access to care, testing, and treatment. It acknowledged that one major reason it was crucial to get PrEP to sex workers was that at the time police could use the possession of condoms as evidence to justify arrests on prostitution charges. The blueprint stressed that the campaign should seek to increase cultural competency among health-care providers in order to reduce the stigma at-risk patients often encounter when seeking care. But even the CDC provides no clear guidelines for how providers should approach the topic or ask appropriate questions for people who trade sex, though they do for other at-risk groups.

More than a year after the state has announced its campaign, most anecdotal evidence suggests sex workers’ access to PrEP is still woefully lacking. Due to widespread stigma and cultural incompetency within the health-care system, fueled by criminalization of sex work, and the fact that even many providers don’t know what PrEP is or how to prescribe it, this potential miracle drug is not reaching the people who may need it most.

*Names of people involved in the sex trade have been changed.

It wasn’t through a doctor or the state-led campaign but at an informational event in a bare, rented room in midtown Manhattan that Casper finally learned how to get on PrEP. Around eight months after his appointment at the Crown Heights clinic, he decided he wanted to learn more about earning his living fully through sex work. Some friends suggested he visit Hook Online, a sex-worker-run nonprofit that provides support to men in the sex industry, and last June Casper attended a “Steps to PrEP” talk, part of Hook’s Rent U educational workshops. There were 15 other sex workers in attendence, most of whom were working at a higher level, earning about $200 an hour. Many, like Casper, had heard of the drug and were curious about a new way to protect their health. They were all interested in knowing precisely how the medicine worked, though relatively few felt ready to get a prescription.

Alex Garner, a gay Latino activist who is both HIV-positive and an advocate for PrEP, led the session. He explained that a PrEP prescription required going to the doctor every three months for an HIV test and a full blood workup. PrEP, he said, could be empowering for the sex workers, in a similar way to how the birth-control pill has worked for women. “With PrEP, you are in control of prevention,” he said. There would be no more negotiating with clients to ensure sex workers were protected from HIV. Regular engagement in care, which would improve health outcomes generally, was an extra benefit.

After attending the session, Casper decided to try PrEP. I met him for pierogi in the East Village last November, the day after he finally got his prescription, through Callen-Lorde Community Health Center, an LGBT clinic in Chelsea. “It’s a miracle,” he said. “The vast majority of people I’ve talked to about this have no idea, and that’s really frustrating.” He was glad to have the peace of mind that he was giving himself extra protection and the possibility of having sex without a condom without endangering his health. Because he was on Medicaid, the prescription was only $3 a month. But he was nervous he would lose his health insurance if he started making too much to qualify for Medicaid, which is only available to individuals without dependents making $16,243 or less a year. If he lost his coverage, he would have to face a treatment interruption. He still felt uncomfortable seeing a doctor, and the idea of having to go back within one month for another full round of tests was daunting.

Other sex workers I spoke to expressed a similar fear about doctors that kept them from seeking the best treatment. Last year, in the aftermath of a crowded Black Lives Matter protest outside the Barclays Center, in downtown Brooklyn, I met Andy, a slim, soft-spoken Latino man. He had been involved in a focus group for Persist Health Project, a Brooklyn-based sex-worker organization, about health-care needs among people who trade sex in New York City. His testimony had been featured in the resulting report, “No Lectures or Stink-Eye.”

Over continuing chants outside, he told me how he’d run away from home at 15 and began trading sex to survive. He started out sleeping with people who put a roof over his head, and then he took on clients. Eventually, he figured out how to work online—to work safer and smarter, on his own terms, and earn more money for less time. He sometimes slept in San Francisco’s Golden Gate Park or on the streets, but he never went to a shelter for fear of being turned over to Child Protective Services. He avoided the doctor for the same reason, instead relying on emergency-room visits a few times when he was desperate. “I experienced it all, from feeling forced to feeling empowered,” he said of selling sex.

By his late teens, Andy had moved to New York and started visiting the doctor for the first time since he was young. He never disclosed the fact he had traded sex until one day when he was in a free clinic in Chelsea to get an HIV test. This time he decided he wanted to tell the truth on the intake form that asked whether he had ever traded sex for money or drugs. It wasn’t something he was ashamed of, and he wanted to see what would happen if he disclosed.

A female staff member soon called him into a back room. It wasn’t made clear what her role was. “I was very upfront about my involvement in the sex trade,” he said. “She began to talk about God, and asked if I knew God loved me.” The provider seemed nearly in tears at the idea he had traded sex. After telling her what he needed was health care and explaining that he was uninsured, he was sent to a counselor. When he told her he didn’t need or want counseling, she tried to persuade him to give it a go. He set up a date and time for a meeting just to be able to leave the room. He never went back.

Since getting health insurance through his job in social work, Andy was able to get a prescription for PrEP, which he learned about online. He wanted to protect himself in his personal life and his sex work, which he still sometimes turns to on the rare occasions that he needs the money. (Though he didn’t disclose that to the doctor in his initial consultation.) “I wouldn’t have gotten on PrEP,” he said of his younger self. “I was too scared to come into contact with any social services, scared of being put in foster care. I don’t think it would have been something I would have found accessible.”

“Don’t put me on a drug and make me go to the doctor every three months unless you’ve made my doctor a sensible fucking person who’s going to treat me well”

Many of the sex workers I met through Persist echoed Andy’s experience, and the organization has received a number of reports from members that doctors have tried to “rescue” them in health-care settings. Persist is concerned that a recently proposed federal law intended to help identify trafficking victims in health-care settings will push more traumatizing interventions on consensual sex workers. One woman I spoke to who’d done time in jail on prostitution charges said that before joining Persist she had never thought of disclosing to a doctor or counselor that she was involved in sex work, assuming she would be judged. “A lot of people are disgusted by you because of what you do,” she said. “Their face will change.” One black trans woman told me that she stopped going to the doctor for a time after one demanded to see her genitals when she came in with a scratch on her eye. While she was uninsured, she’d traded sex to buy hormones on the street.

The fact that many don’t feel comfortable speaking openly with a health-care provider is a major barrier for sex workers who might benefit from PrEP. “People often expect to get some sort of rescue lecture or some sort of shaming about what they’re doing if they talk about how they’re doing something illegal to make money,” Zil Goldstein, Persist’s clinical director, told me. “People get told all sorts of things, from ‘Why are you doing this? Your body is sacred’ to ‘Are you safe, and what can we do to get you out?’ just assuming that people don’t want to be working in the sex industry.” Sex workers know they might face judgment if they disclose what they do for a living, but they may not get access to a PrEP prescription without explaining why they are at risk.

In June, I met Brandon Harrison, who wears elegant silver piercings and a warm smile, around the corner from Callen-Lorde, where he is leading the PrEP campaign. The clinic is the largest prescriber of the drug in New York State and one of the biggest in the nation, where only around 8,000 people have started the drug regimen. To date, more than 1,000 Callen-Lorde patients have been prescribed PrEP*. He is eager to set up a sex-positive awareness campaign about PrEP aimed specifically at sex workers, but right now that’s just an ambition.

That morning he had received a panicked call from a patient who does sex work and had been prescribed PrEP. The financial assistance program the patient was signing up for required a copy of his W-2 form and an explanation of how much money he expected to earn that year. Many who make their money by selling sex often go without health insurance or treatment requiring financial assistance because they are afraid they can’t disclose income. Harrison suggested that the patient list himself as an independent contractor.

There are a number of financial assistance programs available to people who want to get on Truvada. The cost otherwise can be prohibitive. For those with insurance, the monthly copay can be as much as $100. For the uninsured, pharmacies will quote as much as $1,500 for a monthly prescription. Gilead, the pharmaceutical company that manufactures Truvada, which is the only PrEP pill available right now, provides the drug for free to anyone uninsured and earning under $58,000 a year who can provide even a notarized letter giving a self-reported estimation of their annual income. The cost of multiple primary-care visits and tests are often still on the backs of patients, so the PrEP Assistance Program (PrEP-AP) was developed by the New York State Health Department’s AIDS Institute to cover all medical costs related to taking the drug. But even though these programs mean most people at risk should be able to get Truvada for free, you can only receive PrEP-AP if your provider has signed up for the program.

“If my provider reacts different from how I expect them to react, not providing me with the best health care but judging the practices that I do, I think that definitely becomes a barrier, and it makes me not want to go back,” Harrison said. “I think that providers definitely need some sensitivity around sex work and being sex-positive.”

As for the concern among anti-PrEP crusaders that people on PrEP will stop using condoms, Harrison replied bluntly that if we continue relying on condoms HIV will continue in the community. “It’s not realistic,” he said. “Especially if you’re worried about a cop catching you doing sex work.” Last May, New York City’s mayor, Bill de Blasio, reviewed the policy allowing the possession of condoms to be used as evidence in prostitution charges and came to the conclusion that it was a dangerous mistake that was inhibiting safe sex. But the policy was only changed for three minor, low-level prostitution charges, and condoms can still be used as arrest evidence for higher-level charges, including sex trafficking and “promoting prostitution,” which can amount to providing a fellow sex worker accommodation or sharing resources or clients. In practice, even if not used for evidence in court, many sex workers and public defenders have said it’s still common for police to confiscate condoms or use them as a threat or excuse for arrest.

“Essentially PrEP is the new gay marriage, the idea being sold to powerful, rich white gay men to make them think they’re still leading the revolution.”

As a demographic with diverse experiences, levels of access, and degrees of risk, sex workers have had varying reactions to how PrEP can help them. Some feel that PrEP is being forced on them by providers—another example of how doctors are often preoccupied with their sexual health at the expense of their general well-being. Some sex workers were also concerned about clients demanding condomless sex if they found out they were on PrEP. As a provider and activist for sex workers’ rights, Goldstein had some concern about who was making the decision for a sex worker to go on PrEP—whether it was a person profiting off the body of someone trading sex or a sex worker who wanted protection.

Last October, Lindsay Roth, a sex-worker advocate who blogs on the website Tits and Sass, published a post bemoaning the fact that sex workers were constantly identified as a “high risk” population when it came to accessing PrEP. “What strikes fear in my little junkie-hooker heart is just how much you have to interface with healthcare professionals to get on PrEP,” she wrote. “I don’t think I could personally stand the potential shaming involved. Plus, lots of non-HIV specialized providers don’t even know what PrEP is.” She argued that if policy makers were going to make sex workers a priority as a key population, they would have to give them a seat at the table. Goldstein echoed this sentiment when I asked her how the state could improve its outreach to sex workers. “Involve more sex workers,” she said.

This spring, Casper’s Medicaid expired, and he didn’t have the income-verification documentation necessary to renew it. For the past year, he had felt like he was on a tightrope walk with his medical insurance. While he was committed to legally reporting his income despite the fact that his work was criminalized, he faced losing access to health care if his reported income went beyond the Medicaid threshold. When his insurance ran out, he was overwhelmed by the prospect of having to somehow pay for the exhaustive routine medical visits and tests without insurance, so he stopped taking Truvada as soon as he knew he wouldn’t have the copay the next month to cover it.

He now has mixed feelings about the drug he once saw as a “miracle” and an exciting new way for people engaged in sex work to protect themselves. When he was on the treatment, he described it as exhausting, with his health insurance only allowing him to pick up his prescription in one-month doses and having to have a full screen for HIV and other blood work done every three months. He could have gotten on a financial assistance program after he lost his insurance, but “they make you jump through so many hoops,” he said.

In the year since Casper had started taking PrEP, he had become skeptical of the emphasis on getting people on the drug as a means of stopping new infections. Last fall, he attended a national conference on AIDS that felt like an advertising campaign for Truvada, complete with people walking around with T-shirts that said I LOVE PrEP. At a workshop he attended there, a black trans woman and community activist from the Bay Area openly criticized PrEP. While the communities she worked with needed better access to health care, housing, and employment in order to lift themselves from the conditions putting them at risk of HIV, she felt that the new push promoting PrEP was “throwing drugs at people” without addressing the social factors, economic inequality, and systemic violence that are often the real catalysts of new infections. While most of the other attendees were outraged by her critique, Casper strongly identified with the concerns. To Casper, the message from the other presenters seemed to be that now there was a pill to protect against HIV, there was no excuse for you to be infected.

“If we’re talking about people who are targeted by evidence of prostitution, particularly women of color and trans women of color, they are already going to have trouble accessing the level of institutional care they need to be on PrEP,” he said. “So PrEP is not a solution for the people who need it most.”

O’Connell, the director of New York’s AIDS Institute, admitted that there was no special effort underway to reach sex workers as part of the New York State campaign. But he acknowledged that for any strategy to be successful it would have to include sensitization and training for providers to overcome the stigma felt by sex workers accessing health care. “If someone is willing to provide PrEP but people don’t feel welcome when they turn up, they’re not going to stay,” he said.

Unless the state is making sure that doctors have a respectful approach to treating people who disclose they have engaged in sex work, Casper believes expecting sex workers to sign up for a medication that requires them to go to the doctor regularly is unfair.

“Don’t put me on a drug and make me go to the doctor every three months unless you’ve made my doctor a sensible fucking person who’s going to treat me well,” he said. “That’s why I feel weird about throwing PrEP at people, because taking care of themselves is submitting themselves to trauma a lot of the time.”

Though he admits his own privilege in comparison with many who trade sex, he is infuriated by the “rich white gay men” he sees proudly claiming to be “Truvada whores,” men who “have never done sex work, never needed to do sex work, and don’t know anyone who does sex work.”

For the people actually selling sex who don’t have the privilege of regular health-care access, or those who are indeed HIV-positive and don’t even have access to treatment, he feels that promoting PrEP as the new answer to ending HIV is a slap in the face. “It’s really a thing that helps people with good health insurance and good health care,” he said. “Essentially PrEP is the new gay marriage, the idea being sold to powerful, rich white gay men to make them think they’re still leading the revolution.”

*Update: A previous version of this article misidentified the number of patients that have been prescribed PrEP by Callen-Lorde Community Health Center. There have been over 1,000 prescriptions written.