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Speaking of sex workers: how suppression of research has distorted the United States' domestic HIV response.

Introduction

In her book On Lies, Secrets and Silence, Adrienne Rich wrote that "whatever is unnamed ... will become, not merely unspoken, but unspeakable." (1) For political reasons, sex work is unnamed in the US government's HIV response. Twelve years ago, it became dangerous to speak of it in research grant applications. Sex workers, as such or by any other term, are not mentioned anywhere in the US National HIV/AIDS Strategy. This government-sanctioned silence has stifled research on the scope and nature of sex workers' HIV risk and has suppressed domestic investigation of effective HIV prevention, care and treatment strategies for this population. Without this essential evidence base, the importance of including sex workers in the national HIV response is chronically overlooked and efforts to address their HIV-related needs are unfunded or severely underfunded.

The most obvious purging of sex work from America's HIV response was the anti-prostitution loyalty oath (known as APLO or the 'Prostitution Pledge') language inserted during the George W. Bush administration (2001-2009) into legislation implementing the President's Emergency Plan for AIDS Relief (PEPFAR). The APLO stipulates that "No funds ... may be used to provide assistance to any group or organization that does not have a policy explicitly opposing prostitution and sex trafficking." It also specifically prohibits funding any applicant that supports the decriminalization of sex work. (2)

In the Bush presidency, attitudes about sex work were used as a litmus test for deciding not only who could be funded under PEPFAR but also how the research budget of the National Institutes of Health (NIH) was allocated. In 2003, the US House of Representatives attempted to amend the NIH budget to rescind funding for five studies on aspects of sexual behavior, including one on undocumented sex workers in San Francisco. (3) The rejected amendment was part of a high-pressure campaign mobilized by the Traditional Values Coalition (a fundamentalist Christian lobbying group claiming to represent 43,000 US churches) and their allies in Congress. It alleged that some NIH funding was being "wasted" on grants addressing "prurient" topics. (4) To demonstrate this, the Coalition presented federal officials and sympathetic Republican legislators with a list of over 200 NIH-funded grants, including studies on HIV risk among sex workers in Moscow, the pattern of HIV transmission among opiate users in Thailand, and the effect of STI prevention efforts implemented in high schools in South Africa. Chris Beyrer, principal investigator of the Moscow sex workers study, observed that "in the middle of an epidemic in which sexual behavior and drugs have been linked for 20 years, you'd think it would be uncontroversial to try to understand more about that interaction." (5)

The NIH was compelled to defend its funding for the listed research studies, justifying each through an unprecedented, highly labor-intensive grant-by-grant procedure. Most of the studies were investigating sexual and drug-using behaviors associated with HIV transmission. The Traditional Values Coalition also persuaded the Bush administration to overrule the FDA Advisory Committee's recommendation to approve emergency contraception for purchase over the counter, continue to fund abstinence-only sex education in public schools despite its demonstrable ineffectiveness, and issue travel quotas that sharply limited attendance of federally-funded researchers at International AIDS Conferences. (6)

To assess the impact of the Coalition's campaign on researchers, one study surveyed a majority of the 162 principal investigators whose NIH grants were scrutinized during this period. About half of them said they responded by adopting self-censoring behavior, including omitting red flag words (such as AIDS, gay, sex worker, harm reduction, etc.) from the titles and abstracts of their NIH submissions. Many also reported having "reframed" their research, moved away from certain research topics and, in a few cases, changed their jobs. (6)

The political climate has changed somewhat during the Obama administration (2009-2016). With regard to sex workers, the US Supreme Court ruled in 2013 that the APLO could not be imposed on US-based organizations because it violated their right to freedom of speech, as defined in the US Constitution. The restriction is still imposed, however, on PEPFAR grantees not based in the US, since their rights are not protected by the US Constitution, and this interpretation is undergoing further legal challenge. (7)

The omission of sex workers from the US National HIV/AIDS Strategy published in 2010 was surprising, given that the document is generally regarded as evidence of the Obama administration's progressive approach to HIV. The US government consistently omits sex workers from its discussion of domestic populations at high risk of HIV. Globally, the term key populations is used to describe "groups of people who are more likely to be exposed to HIV or to transmit it and whose engagement is critical to a successful HIV response." (8) UNAIDS and many countries identify sex workers--along with men who have sex with men and people who inject drugs--as three central key populations. (8) Interestingly, the US government uses the term freely when discussing PEPFAR and other international programs but does not use the term at all in its domestic HIV response. (9)

Criminalization of sex work, together with governmental silence, leads to gaps in research and services

The legal status of sex work in the US is defined by a patchwork of state laws that explicitly criminalize it in almost all jurisdictions. In a few counties in the state of Nevada, it is legally sanctioned and strictly regulated. (10) Enforcement of these criminalization laws varies from state to state but, uniformly, street-based sex workers of color, particularly those who are transgender or immigrants, are at highest risk of police attention and arrest. (11)

This pattern of vulnerability is common throughout the 116 countries that have punitive laws against sex work. (8) In the US, however, sex workers are invisible in public HIV prevention policies and funding. There is no sex worker category in the US National HIV Behavior Surveillance System (NHBS), which disaggregates HIV risk, incidence and prevalence for a range of other at-risk populations. Federal officials assert that sex work is understood to fall under the broader and vaguer heading of "sex exchange", one of the components of the risk category identified as "high-risk heterosexual sex." (12)

This imprecise and misleading classification can only be understood as a politically motivated decision to maintain sex worker invisibility. Because sex work is unnamed in the American public health infrastructure for political reasons, it has become unspeakable or misnamed as something else. This results, as Decker et al. noted, in a "dearth of data [that] stymies our ability to develop a national HIV response for those in sex work, and perpetuates their invisibility and marginalization in US policy and interventions." (12)

Readily accessible research done on HIV prevalence among female sex workers in low- and middle-income countries shows HIV prevalence among female sex workers that is approximately fourteen times higher than the general female populations of those countries. (13) UNAIDS data indicate that, globally, HIV prevalence among sex workers is twelve times greater than among the general population. (34) The US Agency for International Development (USAID) routinely collects information about HIV prevalence and the effectiveness of services targeting sex workers in many PEPFAR-funded counties. (9) Inside the US, however, these data are neither tracked nor documented at the national level. In the absence of national CDC data, local HV prevalence estimates provide the only available domestic picture.

The scant available evidence suggests that--as is the case globally--sex workers' access to HIV-related prevention, care and treatment services is tenuous at best in legal and political environments that criminalize them. In a 2013 study, approximately 9% of the 700 female sex workers incarcerated in New York City jails were living with HIV. (14) In a 2011 study done among New Yorkers exchanging sex for money, drugs or other resources, 14% of men and 10% of women tested HIV-positive. (11) The authors of this study define "commercial sex work" as "a sub-category of exchange or transactional sex, defined as the trading of sex for material goods". (11) Since the traditional definition of sex work (exchanging sex for money) is a narrower category than exchange sex, one can debate whether HIV prevalence among exchangers is comparable to prevalence among sex workers. But the fact remains that all these numbers contrast sharply with New York's overall HIV prevalence of 1.4%. (11)

Similar numbers are found in other cities. In 2006, an estimated 24% of the street-based, drug-using women selling sex in Miami were living with HIV, (15) as were 26% of male sex workers in Houston in 2007. (16) Among male-to-female transgender sex workers in Boston, an estimated one third were living with HIV in 2009. (17) Clearly, this high prevalence is the result of intersecting forms of stigma and vulnerability. The marginalization experienced by sex workers or people who use drugs is doubled for those engaging in both. This marginalization is further compounded by racism and trans-phobia for those who are transgender and/or people of color.

While it is not possible to measure the impacts of each of these factors independently, there is evidence of the effect that decriminalization of sex work can have. New Zealand decriminalized sex work in 2003. That single policy change resulted in "improved working conditions, reduction in police brutality, and empowerment of FSWs [female sex workers]". (18) Although marginalization, which increases vulnerability to HIV, is interwoven with cultural and economic factors, policy changes can help countries transition from a legal and cultural environment guided by punishment to one informed by public health imperatives.

HIV prevalence probably varies widely across sectors within the sex industry, and is likely far lower in most sectors than the above prevalence figures suggest. No definitive census of sex workers in the US and Canada exists. The city-specific data presented above were gathered from street-based sex workers who tend to be the most vulnerable and also the easiest for researchers to locate. People working in Canada's sex industry estimate that 5-20% of Canadian sex workers are streetbased. (19,20) In the US, about 15% of sex workers are thought by those in the industry to be street based. (21)

Female, male, or transgender street-based sex workers in the US tend to be impoverished, marginalized and at high risk of homelessness, addiction, and violence at the hands of both clients and the police. In one study in Miami, for example, women selling sex in the streets described their immediate needs as being very basic: clean water, shelter, transportation and drug detoxification. Their longer term needs included health care (mental and physical), legal assistance and help in getting a legal job. (22)

Street-based sex workers' negotiations with clients regarding prices and condom use are often done hastily, so that they can get off the street before being noticed by police. A 2009 study conducted in Canada showed that the threat of arrest both impedes condom negotiation and deprives the sex worker of the time needed to size up a client and assess the likelihood that he may be violent. Thus, the job is more dangerous and more likely to result in increased HIV transmission than would be the case if arrest were not imminent. (23)

The health of sex workers in other work settings is also compromised by criminalization. It can lead massage parlor managers to prohibit workers from keeping condoms in the workplace for fear that, during a raid, they could be seized as evidence of sex being sold on site. The fact that sex workers cannot report on-the-job rape, assault, extortion or theft to the police without risking arrest themselves, means that they can be and frequently are abused with impunity. As in Canada, American laws regarding sex work appear to be obstructing HIV prevention goals but, due to the lack of relevant research, the extent of this effect cannot be effectively characterized or quantified.

Since self-disclosure as a sex worker often leads to discriminatory treatment or outright rejection in health centers and other social service agencies, sex workers (whether indoor or outdoor) also have sporadic access, at best, to appropriate HIV prevention, care, and treatment services. (24) Additional barriers to HIV prevention and care services for sex workers are now emerging in the form of state laws that criminalize transmission of, or exposure to, HIV. In the US, at least 32 states and two territories have such laws. In 15 of them, the standard penalty is enhanced if the accused was arrested on a prostitution-related charge. (25) These enhanced penalties can be applied in some states even if no sexual contact has occurred--simply on the basis of allegations that the defendant offered to have sex with another person. In many states, HIV testing is mandatory for people arrested on charges related to sex work. (25)

Almost no research has been done in the US on the impact of these multiple barriers on HIV incidence and prevalence among sex workers.

How research is changing the public view about the criminalization of sex work

In 2014, the World Health Organization estimated that 40-50% of the new adult HIV infections worldwide were occurring among key populations and their partners. (26) This assessment did not include specific estimates by key populations. Globally, research to assess needs and define best practices for HIV prevention, care and treatment among sex workers has expanded in recent years, with studies completed in sub-Saharan Africa, South and Southeast Asia, Eastern Europe and Russia. (27) At the International AIDS Conference in 2014, the International AIDS Society's President announced that "Efforts to improve HIV prevention and treatment by and for people who sell sex can no longer be seen as peripheral to the achievement of universal access to HIV services and to eventual control of the pandemic." (28)

At that conference, the Lancet issued a series of seven papers on the link between the spread of HIV and the criminalization and stigmatization of sex work. One of these papers was a meta-analysis by Shannon et al. of data on female sex workers and HIV risk to date, showing that "decriminalisation of sex work would have the greatest effect on the course of HIV epidemics across all settings, averting 33-46% of HIV infections in the next decade." (27) According to the authors, decriminalization as a macrostructural change is capable of creating safer work places for sex workers and reducing risk of violence at the hands of clients and police. This alone would lower HIV incidence across diverse settings. They add that sex workers currently have far less access to basic HIV prevention, treatment and care services and conclude that to generate "substantial change among FSWs, scale-up needs to coincide with structural changes, sex worker-led interventions, and engagement through community empowerment." (27)

A consensus among public health professionals in this area is growing. In 2012, the World Health Organization, in collaboration with other UN entities and the Global Network of Sex Work Projects, published guidance on how such prevention efforts among sex workers could be scaled up (29) and the International Labour Organization officially recognized sex work as work. (30) That year, the UN's Commission on HIV and the Law recommended decriminalizing private and consensual adult sexual behaviours, including same-sex sexual acts and voluntary sex work, (8) noting that, among other things, criminalizing these behaviors necessarily "drive[s] people underground, away from essential health services and heighten[s] their risk of HIV." (8)

What next?

Globally, the body of evidence regarding what constitutes an effective HIV response for sex workers and their clients is growing. Emerging findings contradict outdated myths about sex workers (31) and are generating increasing interest among funders to support further research. WHO and UNAIDS are urging researchers and program implementers to recognize the importance of utilizing participatory methodologies, given their unique capacity for revealing and quantifying the hard-to-pinpoint structural factors driving HIV risk. (29) This is a productive shift away from the conventional, researcher-controlled or institution-dictated approaches of the last two decades that generally focused on individual behaviors, such as condom use, and bypassed the vital impact of contextual drivers such as violence, criminalization and lack of access to appropriate care.

Meanwhile, the US lingers in an atmosphere of scientific suppression and is faced with a serious dearth of domestic data on sex workers and HIV. Its repressive history has also made the task of finding existing data much more difficult because the small amount of research that has been conducted is often labeled obliquely, with key words replaced by more "neutral" terms.

It is time for this to change. As UNAIDS, the International AIDS Society and global health authorities have concluded, the most effective policy change would be to decriminalize sex work. This is not yet politically feasible in the US as a whole. But other feasible steps are critical to pave the way. These include:

* Recognizing sex workers as a distinct group rather than a subgroup of "heterosexuals at risk of HIV infection". This revision at all levels of the NIH (including the CDC) will generate expanded research into the needs of people of all genders who self-identify as sex workers. Their needs cannot be assumed to be congruent with the needs of those who trade sex for money or other commodities but do not self-identify as sex workers. Peer-based, sex worker-friendly health care facilities are one example of an approach with proven effectiveness (18,24) that will not be prioritized for public funding until sex workers are recognized by federal and state health departments as a distinct key population in need of its own targeted services.

* Updating the National HIV Behavior Surveillance System (NHBS). The CDC created the system in 2003 to track HIV incidence and prevalence among men who have sex with men, injecting drug users and "heterosexuals at risk of HIV infection". (32) Informed by WHO and UNAIDS best practices, the CDC needs to enlist the help of sex worker-led organizations in a collaborative process in order to add sex workers to this system effectively. (29) This partnership is essential to ensuring that the formative research process results in an NHBS protocol and core questionnaire tools that are acceptable to sex workers and with which they will interact. Without this collaborative approach, the resulting effort is likely to be useless. Integrating a sex workers' survey into the NHBS process of periodically surveying NHBS key populations will provide the epidemiologic and needs assessment data required to inform funding allocations for targeted services.

* Explicitly including sex workers as a key population to be served by federally funded contracts for HIV prevention, care and treatment. Proposals submitted by sex worker-led organizations requesting support for peer-based, HIV-related prevention, care and treatment programs are routinely rejected. Explicit inclusion of sex workers among the target populations addressed in federal Requests for Proposals, Requests for Applications, and other grant availability notices would open up a new range of possibilities for establishing accessible, sex worker-friendly health care, support and educational services as a part of our domestic HIV response.

Although one of the richest countries in the world, the US has not been able to lower its rate of new HIV infections in the last decade. (33) Decker et al. note that "The marginalization and criminalization of sex work through policy and practice are challenges to the success of the National HIV/ AIDS Strategy and to control of the US HIV epidemic." (12) Acknowledgement of sex workers as a population deserving of public health services and the integration of peer-based services targeted to them into the national HIV response services would constitute progress toward meeting these challenges. (34) Continued governmental silence and inaction, however, is unlikely to lead to progress. Or, more succinctly, "You cannot fix what you will not face." *

[ILLUSTRATION OMITTED]

Doi: 10.1016/j.rhm.2015.06.008

References

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(15.) Inciardi JA, Surratt HL, Kurtz SP. HIV, HBV, and HCV infections among drug-involved, inner-city, street sex workers in Miami, Florida. AIDS and Behavior 2006;10: 139-147.

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(28.) Boseley S. Decriminalise sex work to help control Aids pandemic, scientists demand. Guardian, July 21 2014 http://www.theguardian.com/society/

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(29.) World Health Organization, UNAIDS, Network of Sex Work Projects, et al. Implementing Comprehensive HIV/STI Programmes with Sex Workers: Practical Approaches from Collaborative Interventions. Geneva: World Health Organization, 2013.

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(31.) Strathdee SA, Crago AL, Butler J. Dispelling myths about sex workers and HIV. Lancet 2015;385(9962):4--7 http:// www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(14)60980-6.pdf.

(32.) Allen DR, Finlayson T, Abdul-Quader A, Lansky A. The role of formative research in the national HIV Behavioral Surveillance System. Public Health Reports 2009;124(1): 26-33 http://www.ncbi.nlm.nih.gov/pmc/articles/ PMC2602928/.

(33.) US Centers for Disease Control and Prevention. HIV in the United States: At A Glance. [Online]. http://www.cdc.gov/ hiv/statistics/basics/ataglance.html.

(34.) Joint United Nations Programme on HIV/AIDS (UNAIDS). UNAIDS Gap Report: Sex Workers. [Online]: http://www. unaids.org/en/resources/documents/2014/Sexworkers.

Anna Forbes, MSS

3017 Fayette Road, Kensington, MD 20895 USA. Correspondence: annaforbes@earthlink.net

* This quote is widely attributed to James Baldwin, although no evidence of it was found in his published work. One example of a source so attributing it is: Quotewise.com. James Baldwin Quotes. http://www.quoteswise.com/james-baldwin-quotes.html.
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