Strategies to promote the meaningful involvement of sex workers in HIV prevention and care 
Frances M Cowan1,2 Sushena Reza-Paul3, Manjula Ramaiah3, Deanna L Kerrigan4

Affiliations 
1.	International Department of Public Health, Liverpool School of Tropical Medicine, Liverpool, UK.
2.	Centre for Sexual Health and HIV AIDS Research Zimbabwe, Harare, Zimbabwe
3.	University of Manitoba, Winnipeg, Manitoba, Canada
4.	Center on Health, Risk and Society, American University, Washington DC. USA.

Corresponding author
Frances M Cowan – 
Liverpool School of Tropical Medicine and Centre for Sexual Health and HIV Research Zimbabwe.
Pembroke Place,
Liverpool L3 5QA
frances.cowan@lstmed.ac.uk

+263 242 333393
+44 7833 654598Abstract

Purpose of review
We review the recent evidence regarding strategies for engaging sex workers in HIV prevention and care programs. We searched Pub Med on 19th March 2019 using terms "Sex Work" And "HIV infections". Our search was limited to articles published since 2017. 
Recent findings
Community empowerment approaches where sex workers work collaboratively to address their specific priorities and concerns, including those beyond HIV, are those most likely to meaningfully engage sex workers. Community-driven programs that combine structural, behavioral and biomedical approaches can facilitate improved HIV outcomes by tackling barriers to uptake and retention of services along all steps in the prevention and care cascades. Microplanning, network-based recruitment and mobile-phone interventions can also help reach and support sex workers to mobilize and to engage with a range of services. Sex worker-led groups and initiatives including economic strengthening and community drug refill groups can both build social cohesion and address structural barriers to HIV outcomes including financial insecurity. Interventions which focus narrowly on increasing uptake of specific steps in prevention and care cascades outside the context of broader community empowerment responses are likely to be less effective. 

Summary
Comprehensive, community-driven approaches where sex workers mobilize to address their structural, behavioral and biomedical priorities work across HIV prevention and treatment cascades to increase uptake of and engagement with prevention and care technologies and promote broader health and human rights. These interventions need to be adequately supported and taken to scale.

Keywords
community empowerment, female sex worker, HIV/AIDS, prevention, HIV treatment, cascade.

Main Article (2784 words)
Introduction 
Sex workers are defined by UNAIDS as people aged 18 years and above, who receive money or goods in exchange for sexual services, either regularly or occasionally. Sex work is consensual sex between adults, can take many forms, and varies between and within countries.(1) All types of sex are bought and sold by men, women and transgender persons, in constantly evolving ways, by people who identify as sex workers and those who do not. Sex workers bear a disproportionate burden of HIV globally[1] and as such need access to effective HIV-related prevention and care, in addition to a range of other services to reduce their vulnerability more generally. In addition to benefits for sex workers themselves, modeling suggests that effective programs taken to scale would have an important impact on new HIV infections in the wider population.[2-8] Strengthening HIV prevention and care for key populations including sex workers is one of the central pillars of UNAIDS fast track response for ‘ending AIDS’ by 2030. 
In many settings, those selling sex may be criminalized as a result of sex work as well as their immigration status, sexual practices or substance using behavior, all factors that may impact their uptake of HIV-related and other health and social services. Many sex workers are vulnerable to exploitation as a result of their life experiences before they started selling sex and since entering sex work. Experiences of physical, verbal and sexual abuse as well as poverty, food insecurity,[9] the need to provide for dependent children[10], stigma associated with orphaning and living in a family affected by HIV[11] and/or substance use are all common among sex workers. Programs that enable sex workers to organize around and work collectively to address their broader social vulnerabilities in addition to their HIV risk are most likely to have an impact.[12]
Barriers to engagement with HIV services maybe context specific and include those mentioned above. Sex work specific barriers include occupational stigma and discrimination, including in the context of health services and  concerns about being ‘outed’ as a sex worker (in the community, to parents, police, immigration services and other authorities). The context in which sex work is undertaken is dynamic; for example changes in the political environment in Goa, India in the 2000s resulted in the red light district being bulldozed making it harder for sex workers to access HIV-related services [13] while the steep economic decline in Zimbabwe over 2000s altered male demand for sex work as migrant workers lost their jobs and returned to their family homes, changing how and by whom sex was transacted.[14, 15] 
Community empowerment is effective in improving HIV outcomes among sex workers
Community empowerment approaches seek to build social cohesion, psychological and financial resilience, and facilitate sex workers’ ability to work collaboratively toward shared goals [16, 17] enabling them to prioritize and address the specific challenges they face, which may include barriers to uptake and engagement of HIV services. In South Asia, where community-driven programs for sex workers have been a central component of HIV programming for decades, facilitating sex worker mobilization around labor and human rights has been critical to higher uptake of HIV services, better condom negotiation, and reduction in violence from clients and police [18-21]. The Sonagachi program in Kolkata was the first to demonstrate the broader health and human rights benefits of sex worker collectivization. The Avahan India AIDS Initiative subsequently scaled up community driven programs for sex workers across India to optimise program coverage and support prevention and care uptake.[16, 22, 23] In addition to promoting benefits in terms of building community capacity, resilience and cohesion, it is estimated to have averted >100,000 new HIV infections in India between 2003-2009 and was highly cost effective;[24] future antiretroviral cost savings exceeded program expenditure ($77 million c.v. $50 million).[25] Community-driven programs for sex workers have been shown to be highly cost  effective.[26] 
In the generalised epidemics of sub-Saharan Africa however, programs have focused on prevention approaches applicable to the wider population and until recently have not prioritised interventions for sex workers. As a result approaches to meaningfully engaging sex workers in these settings are less well developed. In 2012, a systematic review of female sex worker projects across Africa found only 42 projects, often linked to research and largely ‘isolated and limited in coverage and scope’.[27] Very few had developed community empowerment approaches beyond basic peer education (so had not moved to community ownership or sustainability), despite robust evidence that empowered sex work communities have lower HIV incidence, STI incidence and reported condom use.[12]  An updated systematic review of sex work interventions for female sex workers in sub-Saharan Africa published in 2017 found that those interventions that supported peer leaders to steer community activities showed a twofold increase in coverage of behavior change communication and utilization of health services among sex workers. The authors noted however that in these projects peer educators were involved in delivering health education and condoms rather than leading a broader community empowerment process. They found little evidence of widespread scale up of empowerment projects that had matured beyond peer education since the previous review in 2012. However, interventions that address structural factors, including through economic strengthening projects, along with biomedical and behavioral strategies led to improved HIV-related outcomes.[28] Increasingly projects aiming to build community empowerment among sex workers are being developed and scaled up across Africa,[29-32] but building community cohesion, capacity and trust takes time. In Mysore, India the Ashodaya Samathi Project estimated it took 3-5 years for sex workers to start owning the program[23]). Few programs in Africa are as yet truly driven by communities. Even fewer include male or transgender sex workers.[33]
Initiatives aiming to facilitate the process of building community cohesion, empowerment and resilience including financial security among sex workers in sub-Saharan Africa are increasingly being designed, implemented and evaluated.[34] Within the context of a broader community empowerment-based combination HIV prevention program, a community saving group initiative was started by female sex workers in Iringa, Tanzania. Savings and loans from the group provided a safety net for women and their families, improving their ability to be more selective about clients and negotiate safer sex. Overall, HIV incidence was significantly lower in the Project Shikamana, community empowerment-based combination HIV prevention intervention, arm compared to the standard of care control community (5 vs. 10.4%; p-value=.047). Participants in community savings groups reported being twice as likely to use condoms with new clients, for example. Additionally, improvements in engagement in HIV care, ART initiation and ART adherence in the last 4 days were also observed in the intervention vs. the control community.[35-37] The SAPPH-IRe trial looked at the impact of intensified community mobilization with on-site access to ART based prevention for female sex workers across 14 national sex work program sites in Zimbabwe.[38] More intensive community mobilization in the intervention arm was associated with greater engagement of women (twice as many new HIV infections were diagnosed), although there was no significant difference by arm in the proportion of all sex workers with a viral load <1000 copies/ml). The proportion of HIV positive sex workers with VL<1000copies/ml rose from 50% in 2013 to 68-73% in 2016, suggesting that increasing program coverage and intensity in the context of a well-functioning national ART program can have a substantial impact on the proportion of sex workers optimally engaged in HIV care. To strengthen community empowerment and ownership beyond that achieved in SAPPH-IRe, self-help groups for female sex workers have been piloted among over 700 women in Harare since 2017, with each group free to address their own challenges and priorities. Fifty four groups have established a range of activities including savings groups, burial societies, gardening projects, child minding, small scale trading, singing /dance groups. Participation has resulted in increased engagement with clinical services.[39] Self-help groups are now being scaled up to 11 additional towns/cities across Zimbabwe. In some settings community-led support groups have been combined with community refill groups with good effect on HIV outcomes.[40]

Comprehensive community-driven programming among sex workers works across all steps of the HIV prevention and care cascades
The evidence for scaling up comprehensive programs for sex workers along the lines outlined by the World Health Organization in their Consolidated Guidelines on HIV Prevention, Treatment and Care for Key Populations including sex workers, as well as the Sex Worker Implementation Tool (SWIT) is clear.[41, 42] including provision of contraception services, supported referral to antenatal care as appropriate, diagnosis and treatment for sexually transmitted infections (STIs), for screening and treatment of cervical cancer and supported by legal advice as required. [43] Central to these guidelines and tools is that comprehensive HIV, sexual and reproductive health services need to be supported by an enabling environment for sex workers through decriminalization and community empowerment approaches that seek to address the intersecting forms of stigma, discrimination and violence that sex workers face.[44, 45] In many low and middle income countries treatment for STI is limited to syndromic management, which has poor sensitivity and specificity. Point of care diagnosis is preferred. Of importance,, the lack of an enabling environment is not an excuse for lack of action. Developing comprehensive programs in meaningful partnership with sex workers can be the first stage in the empowerment process.[46] More recently the importance of providing health services that combine prevention and care in one setting so that sex workers living with and without HIV can access them without fear of deductive disclosure has been highlighted, sometimes referred to as services that are status neutral[47]. Comprehensive, community-driven programs for sex workers have been shown to increase engagement across both the HIV prevention and care cascades (see Figure).[38, 48] The recent introduction of biomedical technologies has led to pressure to focus programs more narrowly, to specifically target HIV testing, and uptake and optimal use of those technologies, but focusing narrowly on HIV prevention and care cascade indicators risks undermining the trust and meaningful involvement of the sex worker community and loosing focus on their broader priorities beyond HIV.[40] Also of concern is the difficulty of providing services for adolescents who sell sex (ASS) in some settings as they are deemed abused/trafficked by international agencies[49] and they are unable to seek prevention and care services. Individually tailored harm reduction support for these adolescents is required.[50] 
Building trust and community engagement will ultimately build demand for and encourage uptake and continued use of services, as exemplified by the experience of Ashodaya Samithi in Mysore India, a sex worker led collective that started in the early 2000s. The sex workers designed and implemented pre-exposure prophylaxis (PrEP) roll out as an integral part of their broader program (see case study).  In stark contrast to the numerous PrEP demonstration programs that have struggled with PrEP uptake and retention,[51] over 90% of all potential PrEP users opted to initiate PrEP; 86% of those who initiated PrEP were retained after 16 months (see case study). [52, 53] 
To ensure optimal access to services for sex workers, programs need to operate in places where most sex workers work and then meaningfully engage communities in these settings. Microplanning was originally developed for use with key populations by the Avahan AIDS India Initiative to optimise program coverage and support uptake[16, 22] of a range of community driven services. It works across prevention and care cascades to reach and retain sex workers. Trained peer educators map and work with fellow sex workers in geographic ‘hotspots’, tailoring the level of support for each individual using a simple vulnerability algorithm (assessing for example age, duration selling sex, recent experience of condomless sex, alcohol, violence, need for clinic review). Regular (weekly) data review allows program staff and microplanners to focus outreach activities where they are most needed. With time and support microplanners learn not only to collect but also interpret and act on their data, allowing sex workers themselves to direct program efforts to reduce sex worker vulnerability and optimise engagement. Microplanning is in the process of being scaled up in parts of Africa. In Kenya, where it has been scaled across the country,[54] there is evidence of increased service engagement and reported condom use when microplanning is operationalized with sufficient intensity (in that setting sex worker ratio is 1:90 or fewer). 

Within the context of a community led service there are specific tools and approaches that sex workers can use to engage their peers and facilitate services uptake. Recruiting, training and supporting sex workers to work as peer educators/navigators who are of similar age/sex  to the most hidden or vulnerable groups is likely most acceptable.[55]  Community-led outreach can be vary in intensity and structure from peer education to promote behavior change and condom distribution to risk-differentiated data-guided peer outreach (microplanning) to support uptake, retention and optimal use of services. Peer navigators can be used to support individuals newly diagnosed with HIV to enroll in treatment and remain within the service network to achieve viral suppression[56, 57] or those eligible for PrEP to initiate and adhere. Some programs have had success using techniques developed to recruit hard to reach populations for research such as variations of network-based recruitment, including providing incentives to ensure certain sub groups are preferentially recruited into programs – for example new entrants to sex work or recently arrived migrant sex workers. Project Engage compared incentivized and non-incentivized network-based recruitment to reengage people living with HIV who were out of care in Los Angeles. In this small study they found that incentive-based recruitment identified harder reach populations including those who sold sex.[58]  
Digital technology is being trialed as a means to engage sex workers with services. For example, a mobile phone intervention for male sex workers developed using empowerment theory[59] has been tested in a pilot trial in Chennai, India, with the aim of increasing uptake and retention in services and has been shown to have high acceptability and retention and to result in reported reductions in condomless anal sex with clients[60, 61] In Cambodia a trial is planned among 600 female sex workers to look at impact of a theoretically derived mobile phone based intervention on HIV and SRH risk over time.[62] Digital technology can be used to support peer educators with a range of activities  including client tracking, providing educational information, information on location of sex work friendly services or for example how to use an HIV self test kit.[63] In some cases sex workers have used Whatsapp to form virtual chat groups and facilitate communication, in addition to physically meeting up to stay in touch and support each other.[39] A potential route to identify and engage with sex workers not previously reached by services could also be to list contact information for programming on sites used by sex workers to connect with clients. 
Sex workers travel both to work and for non-work related reasons.[64] A systematic review of the effect of mobility on HIV related health care found that mobility was associated with reduced initial healthcare access and interruption of ART.[65] In Zimbabwe associations with mobility were mixed, overall mobility was associated with increase in repeat clinic attendance while travel to mines, growth-points, or farms was associated with lower prevalence of viral suppression.[66] In one study from Mexico, peer support for migrant sex workers appears to reduce their social isolation, act as a source of HIV knowledge and condoms and increase their uptake of services.[67] In Iringa, Tanzania, mobility related to sex work was associated with an increased risk for gender-based violence including more severe forms of GBV [68] indicating the importance of additional support for those sex workers that travel for work. Interventions used to retain mobile populations in HIV care more broadly (health passports, planning health care prior to travel etc.) can be adapted to retain mobile sex workers in care when they travel within and between countries.[69]

Emerging technologies such as HIV self-testing (HIVST) offer a potential strategy to improve access to and uptake of HIV testing in sex workers.[70] Demonstration projects suggest that HIVST can increase frequency of testing and reduce the proportion unaware of their status.[71] In some but not all settings poor literacy among sex workers makes accuracy of self-testing problematic.[72, 73] Mode of self-test distribution is context specific. Beckham et al found that self-testing was seen as highly acceptable among female sex workers in Tanzania,[74] but female sex workers in the Dominican Republic appeared to have more reservations about the technology, indicating that they would value the opportunity for consultation with health providers when testing for HIV. In Zimbabwe where there is a trusted national program (Sisters), sex workers prefer to self-test at Sisters clinics (where confirmatory testing was immediately available if required) rather than collect from peers, whereas in Malawi, sex works have opted for peer distribution, again indicating the need to understand the role of culture and context in tailoring services.[63] Distribution of tests/invitation to test through social/partner networks, increasingly used among the general population, needs to be carefully managed to minimize risks of social harms to sex workers.[75]
 
In addition to building an enabling environment, key to engagement in HIV prevention and care is that free, confidential, respectful comprehensive HIV and Sexual and reproductive health services are widely available with the capacity to see all those that need them and that those services are supported by peer led outreach and navigation. Despite high level recognition of the need to include key populations in the global HIV response,[76] nationally scaled programs for sex workers are still relatively uncommon and this needs to be not only a priority but backed up in economic investments including for sex worker-led groups.[77] 

Conclusions 
Comprehensive, community-driven approaches where sex workers leverage their collective power to address their structural, behavioral and biomedical priorities, work across HIV prevention and treatment cascades to increase meaningful engagement in programming. Despite robust evidence and apparent political will to support comprehensive programming, there is still disparate and limited coverage of programs with meaningful engagement of sex workers, limiting the benefit of HIV prevention and treatment for sex workers themselves as well as undermining efforts to achieve global HIV targets.

Key points
Sex workers in many settings experience a lack of meaningful engagement in HIV programming; barriers to engagement in prevention and care have context-specific dimensions that must be understood and addressed.
The case for scale-up of comprehensive, community-driven evidence-based programs for sex workers is clear; quality programs have the potential improve the overall health and human rights of sex workers and reduce their own vulnerability as well as reduce risk of HIV transmission.

Empowerment of sex work communities is central to their engagement in HIV prevention and care, with the ultimate aim that sex work programs are community-led. Programs that engage sex workers and support them to address their priorities including not only biomedical, but structural and behavioral priorities, are most likely to have impact.

Strategies to engage sex workers work across all steps of the prevention and care cascades by facilitating access to HIV services and supporting uptake and ongoing retention (including medication adherence and clinic visits).

Figure: Strategies to meaningfully engage sex workers across the HIV prevention and care cascades

CASE STUDY (Ashodaya Samithi)
The HIV program in Mysore, Southern India was established in 2003 with active involvement of sex workers, laying the foundation for Ashodaya Samithi (Dawn of Hope) an organization ‘run by, for and of’ sex workers, currently with a membership of >8,000. 

Ashodaya’s HIV response includes community mobilization, community-owned health services and addressing broader structural issues of rights, violence, stigma and discrimination with mobilization a cross-cutting theme. 

Ashodaya’s health services address both prevention and care cascades. ‘Community ownership’ has been critical in crafting community norms around consistent condom use, quarterly clinic visits, adherence to PrEP, ART adherence for HIV-positive sex workers, zero-tolerance to violence etc. Both program and research data demonstrate significant reductions in STI/HIV, increases in self-reported condom use and reduction in incidents of violence. 

The holistic approach to improving the life of sex workers has led to ensuring social protection for the members and the establishment of a multi-purpose co-operative society promoting wealth management and financial security. The co-operative bank has 1900 sex workers as shareholders and an annual turnover of US$340,000 in 2018-19.

Ashodaya has also been committed to transferring its knowledge on collectivization, community-led programming and community ownership to fellow sex-workers through the  Ashodaya Academy –through “community-to-community learning” and community-led research.  

A community-led PrEP demonstration project was initiated among FSW in two districts in 2015. The program integrated PrEP into the existing HIV prevention response.  Of 707 FSWs screened, 652 were eligible and 647 were initiated on PrEP and 640 PrEP users completed 16-months of follow-up. Retention was high (98.9%), as was self-reported adherence with no reported change in condom use through the period.  PrEP adherence was substantiated by Tenofovir-level blood testing where 80% and 90.48% had blood levels >40 ng/dL in 3rd month and 6th month respectively. Ashodaya’s successes have been driven by the community which are the pivot of its response. 

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