Finally, we have a highly effective HIV prevention method that isn’t a condom! By taking one PrEP (pre-exposure prophylaxis) pill daily without fail, a cisgender women can get 90 percent protection from acquiring HIV during vaginal sex. Because the drug builds up more rapidly in rectal tissue than in vaginal tissue, protective levels during anal exposure are likely even higher. Given its effectiveness, one might expect PrEP to be widely used among sex workers. But it isn’t. Why?
What Happens in the Doctor’s Office
Many factors contribute to a sex worker interested in PrEP going without a prescription. The difficulty of finding a provider who will not treat her disrespectfully leads many to go without the care they need.
Very few health-care providers create an environment in which sex workers feel comfortable discussing their occupational, as well as personal, health, and safety needs. St. James Infirmary in San Francisco is one of the very few providers explicitly serving “sex worker and transgender communities.” Some other cities have voluntary PROS Networks (Providers and Resources Offering Services) that develop directories of providers trained and prepared to deliver “non-judgmental, client-centric and harm reduction-oriented services to individuals in the sex industry.” But the reality for most people in sex work is that they are unlikely to have such targeted resources available to them.
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While U.S. data on sex workers is scarce, a 2012 Canadian survey of sex workers showed that half of the respondents had difficulty accessing health services in the previous six months due to “fear of judgment, shame, being mistreated or dismissed entirely by health care professionals.” In a December 2015 report on U.S. transgender women engaged in sex work, about half of the respondents reported harassment by medical providers; almost a third were refused treatment; and “mistreatment was consistently higher for those with sex trade experience across all medical settings, especially in the ER and rape crisis centers.”
It’s not surprising, then, that the majority of sex workers don’t speak openly with their doctor, if they visit one. Seventy percent of sex workers surveyed for a 2006 study on their access to care said they had not previously disclosed their profession to a health-care provider. One survey participant said, “I’m so hyperconscious of legal ramifications that I have never disclosed to a provider and I don’t see myself doing that … it feels like [it’s] not worth disclosing because then you are going to become this joke immediately.”
Health-care providers are not legally obliged to notify the police about patients who report that they sell sex. But inclusion of that information in their medical charts can trigger abusive treatment and discrimination by staff, should they visit that provider again. Medical visits can also put sex workers at risk because U.S. federal policy highlights health-care settings as venues for identifying and assisting trafficked people.
Sex workers are, by definition, people who sell sex by choice—even when that choice is tied to circumstance (e.g. choosing to sell sex rather than seeing your kids go hungry). People trafficked into sexual, agricultural, or domestic work (the three biggest areas of forced labor) work under coercion—not by choice. Thus, trafficked people are not sex workers, by definition. Nevertheless, some health-care staff assume that anyone selling sex must be a trafficking victim, even if she vehemently denies it, and wrongful detainment can occur as a result of this.
Imagine how this challenging clinical environment affects sex workers considering PrEP, a medication that requires monitoring appointments every three months. Then combine that with what happens when you live outside an urban area and need a PrEP-experienced provider, and it becomes far less surprising why the medication isn’t as widely used as one might expect.
What Sex Workers Say About PrEP
Despite what we know about access to care and what we know can happen in the doctor’s office, HIV experts making health policy still ask why more sex workers aren’t taking PrEP, given its high effectiveness. Setting aside the access issue, one answer is that most sex workers, like most of the general population, likely have no idea that PrEP exists. Research shows that PrEP has been promoted to men who have sex with men (MSM) far more intensively than to other populations. Even the pamphlet from the Centers for Disease Control and Prevention (CDC), called “Talk To Your Doctor about PrEP,” features a male couple on the cover—and no parallel version targeted to cisgender or transgender women, gender-nonconforming individuals, or straight couples seems to exist.
People don’t demand a product they haven’t heard of or one that is marketed directly to someone else.
The CDC estimates that roughly comparable numbers of MSM (492,000) and women (468,000) could likely benefit from using PrEP. But the majority of new PrEP prescriptions have gone to male patients, from 51 percent in 2012 to 89 percent in 2015. This bias endangers the lives of sex workers, people who use drugs, and people of all genders who are at risk of HIV and do not self-identify as MSM.
In 2014, the global Network of Sex Work Projects (NSWP)—an international, sex worker-led, membership network active in 71 countries—conducted a consultation on “PrEP and Early Treatment as HIV Prevention Strategies.” Members’ input included the following observations:
Awareness of PrEP is very low because access to it is very limited. Regulatory authorities in only seven countries have approved it to date. And PrEP may be viewed as a lower priority for people who could use it because it has limited value compared with condoms; it doesn’t protect against pregnancy or sexually transmitted infections (STIs), only against HIV. For those who can afford only one form of protection, condoms are better.
Some NSWP members were concerned that sex workers may be forced to take PrEP (regardless of preference, potential side effects, etc.) by public health officials looking to reduce HIV incidence. This fear of coercion is rooted in the mandatory HIV and other STI testing imposed on them in some countries—including the United States—which has been destructive to HIV prevention efforts. In 25 U.S. states, people arrested, convicted, or simply charged with prostitution can be subjected to HIV testing without their informed consent.
Furthermore, sex workers worry that PrEP possession, itself, may be criminalized. In many countries, including the United States, police and courts already use the possession of multiple condoms as “evidence” of intention to do sex work. Domestically, 48 percent of sex workers surveyed as part of a 2014 report said they had experienced condom confiscation by the police. Some fear that police could likewise make PrEP possession grounds for arresting and charging a person with intention to engage in sex work.
As the NSWP study noted, there is also concern that PrEP may viewed as a “silver bullet” that protects sex workers from HIV—thus rendering it unnecessary to improve their safety and access to health care in other ways. Clients and personal (non-paying) partners may use PrEP as an excuse for refusing to use condoms, arguing that PrEP is all the sex worker needs for protection. Brothel owners or other managers may coerce sex workers to use PrEP so they can sell condomless sex for higher prices—a requirement that would further endanger sex workers by increasing their risk of other STIs, pregnancy and even HIV if their PrEP use is inconsistent.
How Can Sex Workers Fit PrEP Into Their Daily Lives?
Despite the varied concerns expressed through NSWP, many U.S. sex workers who are aware of the medication see PrEP as a potentially valuable option. In a 2013 study of 85 women in six U.S. cities, which I conducted for the U.S. Women and PrEP Working Group, 65 percent said they might want to try PrEP and 62 percent said that health-care providers should discuss PrEP with their patients. (Seventy-two percent of whom were current or former sex workers.)
PrEP delivery models designed by sex workers, themselves, are proving to be effective at getting the medication in the hands of those who want it. A demonstration project in Zimbabwe called SAPPH-IRe (Sisters Antiretroviral Programme for Prevention of HIV—an Integrated Response) is offering PrEP as part of its package of health care and screening. It is embedded in the national Sisters program, which has been serving sex workers with medical care, legal advice, and peer educator outreach in dedicated drop-in centers across the country since 2009.
In South Africa’s TAPS (Treatment and Prevention for Sex workers) demonstration project, the researchers at the University of Witswatersrand Reproductive Health and HIV Institute work closely with the Sex Workers Project (SWP) as they provide clinic-based and mobile health services to sex workers. The Sisonke Sex Workers Rights Union and SWEAT (the Sex Workers Education and Advocacy Taskforce) also participate as members of the TAPS Community Advisory Board.
Successful peer-based PrEP outreach and engagement is also working in a few U.S. sites. St. James Infirmary is part of a San Francisco HIV prevention partnership, in which five organizations (addressing various highly vulnerable populations) have received $3.7 million to deliver high-impact HIV prevention services, including PrEP, to their constituents.
HIPS in Washington, D.C., has added PrEP education and outreach to its array of harm reduction and support services. In an interview with Rewire, HIPS’ PrEP specialist Angel Brown stated that fear of HIV stigma is a barrier to PrEP use, especially among transgender women. Truvada, a blue antiretroviral pill used as PrEP, is also given for HIV treatment (in combination with other drugs). Simply having Truvada can cause someone to be mistakenly labeled as having HIV. “Why don’t they just make [the PrEP pill] pink or something?” Brown asked. She also noted that PrEP use “is very new to racial minorities” and most PrEP ads feature gay white men. “What about the women?” she continued. “The Black women and the Latina women? How come we don’t see them?”
HIPS works with several local clinics prescribing PrEP. Brown helps clients pick one and accompanies them as a liaison into the process of getting PrEP, in part to ensure that they are treated respectfully. Since HIPS responds to a broad range of issues—including homelessness, drug use, and violence—Brown is prepared for the challenges involved in helping her clients fit PrEP into their daily lives.
Taking medication regularly is never a stand-alone decision. If it doesn’t fit into the pattern of our daily activities, we miss pills and lose effectiveness. Peer-led organizations familiar with sex workers’ activities and priorities can be funded to design and roll out programming that matches their needs. Funders and health-care providers cannot achieve this, however, without having a working knowledge of the lives of the people to whom they are offering PrEP, and without the skills and confidence to make sex workers comfortable in their offices.
Unfortunately, even public health officials who grasp this disconnect seem unable or unwilling to take action on it. In 2015, the State of New York earmarked $3 million toward making PrEP available for free to “at-risk” New Yorkers who could not obtain it with other coverage. This is part of the state’s ambitious “Plan to End AIDS,” which proposes to reduce HIV incidence from 3,000 per year now to 750 by 2020. The plan does not mention sex workers per se—but follows the example of the National HIV/AIDS Strategy that lumps them into a category of “high risk heterosexual women.”
In a 2014 letter, Dan O’Connell, director of New York’s AIDS Institute, acknowledged that there is no plan for reaching sex workers in this campaign; any strategy along those lines would have to “include sensitization and training for providers to overcome the stigma felt by sex workers accessing health care,” and they don’t have the money for such training. Thus, the chance to do better in making HIV prevention accessible to sex workers is lost again.
The solution—funding for peer-led, peer-designed HIV prevention including PrEP—is staring us right in the face. It’s just a matter of being willing to respect those classified as not respectable.