“PROTECTED MEANS ARMED”: PERSPECTIVES ON PRE-EXPOSURE PROPHYLAXIS (PREP) AMONG WOMEN WHO ENGAGE IN SEX WORK AND USE DRUGS IN KAZAKHSTAN

Abstract

Pre-exposure prophylaxis (PrEP) for HIV prevention has recently become available in Kazakhstan, but women engaged in sex work who use drugs (WESW-UD) could benefit from tailored approaches to support uptake and adherence. To better understand how best to support WESW-UD at each stage of the PrEP continuum (awareness, acceptability, uptake, and adherence), we analyzed data from 30 in-depth interviews and four focus groups with 48 WESW-UD from two cities in Kazakhstan. We conducted thematic analysis to characterize perceptions, barriers, and motivators within each step of the PrEP continuum. Participants reported low awareness, but high interest in PrEP. Motivating factors included optimizing health and increased confidence. Participants expressed many preferences and concerns regarding PrEP modality and delivery. Participants also described how organizational mistrust and social support can prevent or facilitate PrEP uptake or adherence. Kazakhstan’s scale-up of PrEP should consider the needs and preferences of WESW-UD to ensure equitable access.

INTRODUCTION

Despite nearly a decade of availability, pre-exposure prophylaxis (PrEP) uptake lags far behind global targets, significantly limiting its potential to reduce HIV acquisition (Bavinton & Grulich, 2021). Particularly in low- and middle-income countries, only 28% of 3 million individuals who could benefit from PrEP actively use it (The Joint United Nations Programme on HIV/AIDS [UNAIDS], 2022). In places where the HIV epidemic remains concentrated among key populations, including women engaged in sex work (WESW) who inject or use drugs (WESW-UD), reaching individuals through tailored and accessible PrEP programming is urgent. Kazakhstan has an estimated 20,250 women engaged in sex work, with an HIV prevalence of 1.3% (Kazakh Scientific Center for Dermatology and Infectious Disease, 2020). Regionally, WESW with additional injection drug use risks have 20 times the odds of being HIV positive (Baral et al., 2013); noninjection drug use also amplifies HIV risks for WESW. Multi-level HIV risks among WESW-UD include: reduced agency to negotiate safe sex, financial insecurity, violence from partners and police, weak legal protections, intersectional stigma and social marginalization, provider discrimination, and constrained service access (Baral et al., 2012; Shannon et al., 2015). PrEP holds potential to reduce HIV acquisition among WESW-UD as an individually-controlled biomedical preventive tool; however, PrEP access remains limited in Kazakhstan.

Kazakhstan’s Ministry of Health (MoH) approved oral PrEP for national distribution in January 2021, but only at AIDS Centers (centralized, state-run HIV treatment clinics); the MoH has not yet approved injectable PrEP. The MoH has designated WESW, along with men who have sex with men (MSM), serodiscordant partners of people living with HIV, and people who inject drugs, as priority groups for PrEP access. In 2021, 70 AIDS Center physicians received training on oral PrEP, including on a comprehensive set of clinical protocols. Despite these efforts, PrEP uptake remains below MoH targets; as of December 31, 2021, only 184 individuals (target: 248) had received prescriptions (Kazakh Scientific Center for Dermatology and Infectious Disease, 2022). The majority of PrEP enrollees were MSM and sero-discordant partners of people living with HIV, with considerably lower enrollment among people who inject drugs (n = 1) and WESW (n = 2) (Kazakh Scientific Center for Dermatology and Infectious Disease, 2022). There is an urgent need for research into this gap to ensure that WESW and WESW-UD are not left behind in Kazakhstan’s HIV prevention efforts.

Globally, WESW face challenges across all stages of the PrEP care continuum, including awareness, acceptability, uptake, and adherence. A PrEP care continuum provides a standardized structure through which PrEP programming and outcomes can be assessed (Kelley et al., 2015; Nunn et al., 2017), as well as to anticipate gaps where PrEP is not yet widespread. Existing WESW and WESW-UD-focused research has primarily come from Africa, North America, and South and East Asia, and has assessed PrEP-related knowledge and interest (Glick et al., 2020; Peng et al., 2012; Walters et al., 2017). WESW have low awareness of PrEP as a prevention modality (Bazzi et al., 2018; Eakle et al., 2018; Restar et al., 2017; Tomko et al., 2019), though once aware, they have high interest. Acceptability of PrEP has been associated with factors such as WESW’s perceived risk of HIV (Restar et al., 2017), trust in healthcare systems and professionals (Jackson et al., 2013), and perceptions of side effects, costs, and access (Peng et al., 2012; Pines et al., 2019). Less research has focused on PrEP initiation among WESW globally (Glick et al., 2020). Existing studies assessing PrEP uptake among WESW are those included in larger intervention trials or open-label extensions of PrEP efficacy trials, and therefore their estimates may not be predictive of uptake under real-world conditions. Uptake relies on the organizations and individuals who provide PrEP, and past research has shown the importance of WESW’s trust in medical providers. Uptake also relies on the modalities in which PrEP is available (oral, injectable, gel, vaginal ring), and individual preferences regarding these modalities (Lancaster et al., 2020; Mack et al., 2014). Finally, studies of both actual and hypothetical (where PrEP is not yet available) adherence have emphasized challenges related to side effects, substance use, and social support (Eakle et al., 2017, 2018; Reza-Paul et al., 2016)

Few PrEP-related studies include women who both exchange sex and use drugs (Glick et al., 2020), and to our knowledge no research on PrEP has been conducted in Central Asia, a region experiencing one of the fastest growing HIV epidemics over the past decade (UNAIDS, 2021). As PrEP scale-up continues in Kazakhstan, focused research is needed to start to fill knowledge gaps regarding PrEP for WESW-UD. This paper describes the first qualitative assessment of the PrEP care continuum among WESW-UD in Central Asia.

METHODS

PARTICIPANT RECRUITMENT AND ELIGIBILITY

We collected data during the formative phase of an intervention study (Aegida), a pilot efficacy trial to evaluate an HIV self-testing intervention for WESW-UD. Data collection was comprised of individual in-depth interviews and focus group discussions. The inclusion of two qualitative methods was intended to provide complementary perspectives on the primary research topic of HIV self-testing: interviews explored participants’ personal experiences with HIV testing and prevention, and focus groups explored preferences for HIV self-testing access, training, and advocacy. Recruitment took place in Almaty and Taldykorgan cities, which are both located in the Almaty Oblast (region). We selected these cities for their high concentrations of sex work and drug use. We conducted in-depth interview recruitment between March and April 2021, and focus group recruitment between May and June 2021. Recruitment procedures and eligibility criteria were identical for both data collection methods, but previously-interviewed participants were not permitted to take part in focus groups. The Institutional Review Boards of Columbia University and the Ethics Committee of the Al-Farabi Kazakh National University (Almaty, Kazakhstan) reviewed and approved all study procedures.

Participants were recruited at one nongovernmental organization (NGO) per city, both of which served WESW and other vulnerable groups with HIV prevention, harm reduction, and social services. One NGO coordinator (in Almaty) and director (in Taldykorgan) assisted study research assistants in identifying and recruiting participants from both their regular client pool as well as the social and professional networks of regular clients. They approached participants with information about the study and administered a computer-based screening to determine eligibility for those who were interested. Eligibility criteria included: (1) past-year vaginal or anal intercourse in exchange for money, alcohol, drugs, goods, or services; (2) past-year injection or noninjection drug use; (3) at least one episode of condomless vaginal or anal sexual intercourse in the past 90 days with any partner; (4) speaking Russian; and (5) self-reported HIV-negative or unknown status.

Eligible participants received information about either in-depth interviews or focus group discussions, depending on the recruitment period, and provided informed consent. Women shared brief sociodemographic information through a computerized survey prior to participation.

DATA COLLECTION

Both in-depth interviews and focus groups were facilitated in Russian language by trained staff (the director and coordinator who assisted with recruitment) at the partner NGOs. Although interviews and focus groups differed in scope as described above, both groups of participants were asked similar questions about the secondary research topic of PrEP. Participants were asked if they had heard of PrEP for HIV prevention. If not, facilitators provided a brief overview (including on various existing modalities), and continued with follow-up questions, including what participant impressions were, if they would take PrEP, where and in what modality they would like to receive it, and whether they would tell their friends, coworkers, or clients that they were taking PrEP.

Data collection utilized web-based videoconferencing platforms Jitsi and Zoom. Interviews lasted 45 to 70 minutes, and focus groups lasted 94 to 115 minutes. Participants were compensated with 1000 KZT ($3 USD) for completing screening and 6000 KZT ($15 USD) for completing in-depth interviews or focus groups. Interviews and focus groups were digitally recorded, professionally transcribed, then translated into English by bilingual study team members. In the case of unclear translation, two Russian speakers reviewed the original text and came to consensus on its meaning in both languages.

DATA ANALYSIS

Five research team members read transcripts to identify emergent themes and develop an initial set of codes for analysis. Three researchers, one Kazakhstan-based and two US-based, were responsible for codebook refinement. The initial codes were applied and refined using a sample of four consensus transcripts. The analysis team proposed updates and refinements to the initial codebook, using updated versions with each transcript to achieve consensus. Once a final coding framework was established, the same three researchers coded all transcripts using Dedoose software.

Coded data were analyzed using a thematic analysis approach (Braun & Clarke, 2006). Analysts summarized themes across the interviews, then loosely organized these themes within four stages of the PrEP care continuum: awareness, acceptability, uptake and adherence. Findings were shared, discussed, and further explored with feedback from the full research team.

RESULTS

Of 71 potential participants screened for inclusion in either interviews or focus groups, 50 (70%) were eligible for participation and agreed to participate. Two could not be reached after screening; 30 completed the in-depth interviews, and 18 took part in four focus groups (4–5 participants each). A summary of participant sociodemographic characteristics is included in Table 1. Below, we present WESW perceptions of each stage of the PrEP continuum relevant to a key population and context where availability is limited: awareness and knowledge, acceptability, and the potential for uptake and adherence. Given the novelty of PrEP and its limited availability, we considered issues related to hypothetical uptake and adherence in one section. Illustrative quotes, drawn from a total of 12 interviews and two focus groups are included, along with participant age and city. Due to the limitations of audio-only recordings, we were unable to identify individual focus group participants, and are unable to provide ages.

TABLE 1.

Participant Sociodemographic Characteristics (N = 48)

Characteristic	n (%) or mean [SD]
Ethnicity
Kazakh	25 (52.1%)
Russian	14 (29.2%)
Uyghur, Tatar, or Korean	9 (18.7%)
Age in years (Mean [SD])	31.5 [6.8]
Has long-term partner/spouse	15 (31.2%)
Has children	17 (35.4%)
Less than high school/equivalent education	11 (22.9%)
Sex work is main source of income	42 (87.5%)
Sex work venuea
Hotel	35 (72.9%)
Private residence	42 (87.5%)
Entertainment venue (sauna, massage parlor, bar, club)	22 (45.9%)
Public location (car, street, other)	19 (39.6%)
Number of clients in past 90 days (Median [IQR])	50 [46]
HIV test in past 6 months	30 (62.6%)
Always uses condoms with partners (paying and other)	8 (16.7%)
Unable to afford food or rent in past 90 days	34 (70.8%)
Homelessness in past 90 days	15 (31.5%)
Arrested or incarcerated in lifetime	21 (43.8%)
Arrested in past 90 daysb	3 (14.3%)

^aParticipants were able to select multiple responses;

^bOf those with lifetime arrest or incarceration.

PREP AWARENESS AND KNOWLEDGE

No participants had familiarity with PrEP; many had never heard of it, and others confused it with antiretroviral therapy (ART) for treatment of HIV infection when the topic was initially introduced. Participants expressed curiosity regarding PrEP and asked their facilitator where they could learn more about it or access it.

After providing standardized information, facilitators asked participants from whom they would like to learn more about PrEP. Some participants said that they wanted to discuss PrEP with a medical professional like a doctor, particularly to ask individualized questions about side effects. However, others expressed mistrust in medical organizations such as AIDS Centers or primary care clinics and the individual doctors and nurses who work there. These participants emphasized that decisions regarding PrEP uptake would depend on the quality of relationships they had with individuals, rather than organizations:

[If] a person known to me tells me about [PrEP] and provides reliable information, I will be sure about this medicine … But if someone from some organization suggests to me “Let’s try!,” I would not agree.

(Participant A, 34, Almaty)

It’s not a [STI clinic], but outreach workers that give trust.

(Participant B, 33, Almaty)

Both quotes emphasize the importance of receiving PrEP information from a trusted source, and for many participants like the second one above, this was a “volunteer”—an outreach worker associated with an NGO—rather than doctors or nurses at an official medical organization. Participants explained that this was because of their history of contact with these outreach workers, and because of the trust they had in them:

Because they keep maximum confidentiality. That is, they give me the opportunity and even the psychological opportunity to trust them.

(Participant B, 33, Almaty)

We relate to them very well, we trust them. We are not wary towards them … ,we are used to getting services from them.

(Focus Group A, Almaty)

For both these participants, their conceptualization of “trust” in outreach workers appears to be based on a history of supportive relations, instead of being based on the trustworthiness of PrEP information or level of knowledge or skills of the outreach workers. Finally, a few participants emphasized that they would like the opportunity to review more information on their own: “I will have to read everything about how my body will adapt, side effects, maybe some hormonal side effects … ” (Participant C, 35, Almaty). While few other participants emphasized self-led learning about PrEP, this participant’s desire to do so indicated her desire for agency and self-determination over such medical decision-making.

PREP ACCEPTABILITY

Participants in both interviews and focus groups expressed a positive attitude towards PrEP and said they would be willing to take it should it become more accessible. Their explanations highlighted two forms of motivation: health and security. Health-based motivation included the primary importance of health in an individual’s life to enable them to meet their obligations, including work and family care. Some participants framed protecting their health within the context of potential risks associated with sex work, and others framed protecting their health within the context of their other health conditions:

As they say, this is my health.

(Participant D, 43, Taldykorgan)

Any woman engaged in this kind of work should take care of herself.

(Focus Group B, Almaty)

My immune system is already weakened with diabetes. I would accept [PrEP].

(Participant E, 36, Taldykorgan)

One participant expressed her belief that taking PrEP would be part of a broader endeavor to improve her overall immune system and health: “No, I think it’s about immunity, in general. We all depend on immunity … If the immunity is strong, then we will not get sick” (Participant F, 35, Taldykorgan).

Other participants described how PrEP may provide a feeling of confidence given the ever-present risk of HIV in an environment where they otherwise had little control:

I would feel more confident, I would not shiver before work or during work, … there may be such a moment when a condom may break.

(Participant C, 35, Almaty)

If they take [PrEP] they’ll know that if suddenly there is such a case, they may not get infected.

(Participant G, 26, Taldykorgan)

Focus group participants (Focus Group A, Almaty) discussed this in the following dialogue:

First of all, you do it for yourself, to be confident.

Be insured.

Be protected, first of all, right?

Protected means armed.

One participant described the protection that PrEP provided as a slogan, indicating the importance of being able to state that she was in a state of protection: “Well, if I take [PrEP], it means that there will be such a slogan for me that I am protected” (Participant C, 35, Almaty).

There was only one participant who said she personally would not take PrEP, due to a lack of familiarity and fear: “No, I wouldn’t want to. I heard talk about this, but in my environment no one did it. I’m afraid” (Participant A, 34, Almaty).

While most participants said that they themselves would be willing to take PrEP, many expressed doubts that other WESW-UD would be likewise willing to do so:

[Other WESW-UD] don’t give a damn; they will have to be forced. And there’s no guarantee that they will take therapy.

(Participant F, 35, Taldykorgan)

There are absent-minded girls … Yes, they should [take PrEP]. I don’t think it will be useful for them, or that they would take it.

(Participant E, 36, Taldykorgan)

In these exchanges, participants frame their co-workers’ attitudes in terms of self-responsibility and awareness of risk or lack thereof. Additionally, some participants suggested that PrEP acceptability may vary by years of sex work experience, with higher acceptability among those who had worked for longer.

Given limited PrEP accessibility at the time of data collection, no participants revealed current use. However, participants reflected on whether and how they might initiate and adhere to PrEP once available. Below, we describe preferences and barriers they identified related to PrEP modality, point of access, and disclosure within their social networks.

PrEP Modality.

Participants expressed a mix of preferences regarding whether they would prefer to receive oral, injectable, or a vaginal ring iteration of PrEP. Many noted the challenges of adherence to daily pills, particularly given co-occurring substance use challenges, while others noted the inconvenience of injection and the comparative convenience of oral pills.

You can’t keep track of taking medications every day. I work two days, I’m exhausted, I can oversleep, but I understand that it’s necessary to take pills at a certain time. [I] have other things to worry about besides pre-exposure prophylactics due to my [substance use].

(Participant D, 43, Taldykorgan)

It seems uncomfortable for me to ask somebody to inject me, or to inject myself intravenously … Pills and drops once a day will be convenient … You carry it in your purse and take when needed.

(Participant C, 35, Almaty)

One participant was mostly concerned with clinical effectiveness: “I don’t know which is more effective … I need to understand, which is more effective” (Participant H, 21, Almaty).

Participants also expressed skepticism of a vaginal ring modality given their work: “Inconvenient during [sex] work, honestly. Maybe it will be convenient with your friend, but this is another thing during work” (Participant C, 35, Almaty).

Point of Access.

Participants preferred to receive PrEP in a variety of locations, including AIDS Centers, sexually transmitted infection (STI) clinics, primary care clinics, NGOs, and pharmacies. As described previously regarding PrEP knowledge and awareness, participants’ trust in medical institutions and individuals varied widely, which influenced where they would want to enroll in PrEP care and receive medication. Confidentiality was important to participants, and many expressed privacy concerns around going to AIDS Center locations:

If I go [to the AIDS Center] to get it, my acquaintances can see me. And if I often go there, they may start asking what I do there and so on.

(Participant I, 29, Almaty)

I don’t like going [to the AIDS Center] … there are a lot of people there. It’s more convenient [to receive PrEP] in some organization where everything is confidential.

(Focus Group B, Almaty)

Another participant mirrored this sentiment when discussing the need to receive PrEP services anonymously (without ID documentation): “If [the AIDS Center] guarantee[s] anonymity, if they don’t ask for an identity card, then yes. I’d run there straightaway, just flying” (Focus Group A, Almaty).

In the same focus group, another participant mentioned the importance of a convenient distribution location: “Yes, if [the AIDS Center] is not somewhere far, where I went before. I paid 1,500 tenge [$5 USD] for a taxi, and I wouldn’t want to go there again” (Focus Group A, Almaty).

Finally, participants expressed concerns regarding medication availability and accessibility at AIDS Centers given past experiences: “[It] shouldn’t happen that there are no medications in stock [at the AIDS Center] … When [suppositories] appear, we run to take them, but they’re already out” (Participant C, 35, Almaty). This indicates that participants have had past frustrations with service limitations at AIDS Centers and are aware of system-level shortages.

Because of the important role that WESW’s managers (pimps, madams) play in their working conditions, we asked about their involvement in HIV testing and prevention. Only one participant described how they serve a gatekeeping role in WESW access to PrEP:

[Madams/pimps] will never let a third person go [to WESW with PrEP]. All this will have to be done through madams … [they] themselves are interested … Because they don’t need accusations [of infection] from clients afterwards … I probably know two pimps whose sex workers … see a gynecologist every three months.

(Participant F, 35, Taldykorgan)

Although prior studies have indicated that the majority of WESW in Kazakhstan work independently (El-Bassel et al., 2021), the high levels of control that managers exact over WESW’s healthcare access may present a barrier to their PrEP uptake. This description indicates that WESW managers would be interested in PrEP for profit- and client-driven reasons rather than out of concern for WESW’s health.

Disclosure of PrEP Use.

As with location and modality, participants expressed a mix of perspectives as to whether they would disclose PrEP use to partners, family, friends, or co-workers. Some participants said they would not reveal this to anyone: “This isn’t necessary information for others … The less you know, the better you sleep” (Participant E, 36, Taldykorgan).

Other participants indicated that they would not feel shame in sharing that they were taking PrEP, and saw it as an opportunity to lead by example: “I’d tell everyone I know that there’s such a system, take care of yourself, have an injection monthly … There’s nothing to be ashamed of” (Participant J, 37, Taldykorgan).

Other participants said they would promote PrEP among their social networks, but may not reveal that they personally took it: “I’d say that PrEP is available, but I wouldn’t say that I take it, because rumors, you know, are overgrown” (Focus Group A, Almaty).

One participant explained this further, saying that the simple act of taking preventive medications would open them up to community stigma, as people would not understand PrEP and assume that the participant was infected with HIV or another STI:

People, on the contrary, would think: “She is sick, infected, because prevention is taking place.” If you weren’t a sex worker, but an ordinary person, and you had a nonregular sexual partner, maybe then … [But] in our environment, [WESW] wouldn’t agree to this. Because [others] will begin to suspect that something is wrong. They’ll start to say something to clients, then clients will start to shy away from you … It’s better not to discuss such topics at all.

(Participant L, 37, Taldykorgan)

By this participant’s account, the simple act of taking medication, even preventively, would convince her social networks that she was already HIV-positive, and result in losing clients.

DISCUSSION

Understanding perceptions and preferences of WESW-UD in Kazakhstan is critical to ensuring this marginalized group is included in PrEP scale-up. Global evidence has shown that when the unique needs of key populations are not considered, PrEP access and uptake remain uneven, perpetuating disparities in HIV prevention (Bavinton & Grulich, 2021). Often, less marginalized groups have higher PrEP uptake compared to other, more vulnerable subpopulations (Conley et al., 2022; Kamitani et al., 2020; Yumori et al., 2021). Kazakhstan’s roll-out of PrEP (nearly ten years after it was available elsewhere, and only in an oral pill modality) provides a unique opportunity to understand and intervene on the factors contributing to disparities that have characterized PrEP scale-up globally. Here, we discuss findings in terms of their implications for PrEP uptake messaging and programming, with the goal of supporting WESW-UD as they move along the PrEP continuum to medication adherence and correspondingly high levels of biomedical protection against HIV infection.

As in other geographical contexts (Glick et al., 2020), participants lacked awareness of and familiarity with PrEP, indicating need for widespread information dissemination and awareness-raising among WESW-UD. In particular, the confusion conveyed by many participants regarding the differences between ART and PrEP indicates that such messaging must clearly communicate PrEP medication’s preventive role. The high acceptability among participants is promising yet consistent with other settings, where ultimately PrEP uptake was lower than had been suggested by formative research prior to dissemination (Poteat et al., 2019).

The already-visible disparities in PrEP uptake between MSM and WESW in Kazakhstan suggests that promotion to-date may have targeted MSM populations; MSM-centered PrEP messaging has been a barrier to women’s PrEP uptake in the U.S. as well (Sophus & Mitchell, 2019). Our findings emphasize the importance of WESW-UD tailored communication strategies (including both message content and delivery) to maximize awareness and acceptability of PrEP. Messaging should respond in meaningful ways to the lived experience of WESW-UD, so that they believe that PrEP is for them too and could be part of their lives; it could be provided both in-person through community-based organizations and through social media, including targeted advertisements on sites where sex work is advertised. Health and security were motivating factors for our sample, and PrEP promotional messaging can speak to these benefits. Emphasizing a second layer of protection, or the feeling of security that women could achieve through PrEP is also consistent with findings from other contexts (Willie et al., 2021). Engaging WESW-UD in the development of these messaging campaigns will be especially important to ensure that messaging speaks to these needs and others, is effective and does not further stigmatization of HIV, sex work, or substance use.

While in other contexts, doctors and researchers have been the primary disseminators of PrEP information (Peng et al., 2012), many of our participants expressed mistrusting medical organizations and professionals. Outreach workers, who are often former members of or close to the focal population, were identified as highly trusted messengers. Alternative strategies are needed, such as community-based messaging through outreach workers and harm reduction approaches that have been effective in increasing awareness in other settings (Walters et al., 2017). Technology-based solutions such as online programming also hold potential to convey PrEP information without exposing at-risk individuals to stigmatization (Evans et al., 2022). Social network strategies have been used regionally among people who inject drugs to increase HIV rapid testing (McCrimmon et al., 2019), and successful elements of these programs can be replicated for PrEP information dissemination. Research has emphasized the importance of understanding varied risk behaviors and perceptions of PrEP even within key groups, and tailoring strategies appropriately (Dangerfield et al., 2021); the variety of preferences among our sample necessitates multiple strategies to reach as many WESW-UD as possible.

Stigma due to sex work, drug use, and/or HIV status arose frequently in participant responses. We have explored elsewhere how intersectional stigma affects attitudes and likelihood of HIV testing in this study sample (Cordingley et al., 2023); present findings suggest that internal and anticipated stigma is a barrier to PrEP uptake as well. Participants’ negative comments about other WESW-UD (including their indifference to HIV risk and their absent-mindedness) may highlight strong internal stigma related to sex work and substance use. The concern that people assume women, particularly sex workers, were already infected with HIV if they see them taking PrEP, has been identified in other geographical contexts (Calabrese, 2020; Goparaju et al., 2017; Sundararajan et al., 2022). This suggests that targeting PrEP awareness-raising to key populations may hinder uptake by increasing PrEP-related stigma, and widespread community education in Kazakhstan must go hand-in-hand with key population outreach.

Our findings show that offering PrEP through a variety of modalities and in a variety of locations is crucial for uptake. Other research has emphasized the impact of modality choice on uptake (Lancaster et al., 2020; Mack et al., 2014). Long-acting injectables were preferred by some participants; given the novelty of this technology, the Kazakhstan Ministry of Health may consider options to fast-track the approval of injectable PrEP as an alternate to oral PrEP. Additionally, PrEP is currently only available through AIDS Centers, but many participants raised concerns about this location, including confidentiality, anonymity, transportation, and medication availability. Our findings suggest that Kazakhstan must diversify locations where PrEP is offered, including pharmacies, primary care clinics, and community-based locations, like NGOs serving key populations. Alternative options for medication procurement (e.g., delivery services) may also help to mitigate some of these barriers for women moving forward.

These considerations won’t only impact uptake, but also adherence. While no study participants were taking PrEP at the time of these interviews, they highlighted many barriers to daily PrEP adherence that were rooted in the complexities of their lives. These included competing and basic survival needs, like economic insecurity, stigma related to sex work and/or drug use, and drug use itself that may stand in the way of daily PrEP use. As Kazakhstan expands services to WESW-UD, programming, messaging, and client communication in health settings should recognize these realities. For example, PrEP could be marketed as part of an overall wellness strategy allowing WESW-UD to engage more fully in their lives with less worry about HIV. Peer navigation using trusted outreach workers and advocates for sex workers could be prioritized and expanded. Within clinical settings, techniques like motivational interviewing, client-centered care, and trauma-informed care, hold promise for promoting adherence among women. This could involve building motivation for sustained use and discussing potential barriers to and tools for adherence (e.g., where they will store medications, when they will take it, what sort of reminders would assist them). Many WESW-UD already take daily medication for birth control, so discussions could cover integrating PrEP into daily pill-taking rituals. In the longer term, the availability of long-acting injectable PrEP and combined PrEP/contraception may appeal to WESW-UD and help them navigate these challenges of daily oral medication.

Other iterations of the PrEP cascade have shown few WESW are offered it (Hensen et al., 2021), suggesting research is needed into workforce capacity. We need to understand how those providers who have received MoH-provided training on PrEP then apply this training, including how they engage WESW in conversations about PrEP in clinical settings, and what support they need for this process. The development and implementation of PrEP support services (case management, peer support, medication reminders) are crucial in ensuring adherence (Nieto et al., 2020). Finally, our findings show that social support and networks may play key roles in PrEP adherence. While many participants were comfortable sharing PrEP use, others did not welcome the disclosure of personal information. This again emphasizes the need for multiple tailored approaches and options for WESW-UD that allow some to seek PrEP and support openly, and others discretely. There is a need for rigorous testing of group-based interventions that allow women to build camaraderie as well as gain information and skills.

These findings must be interpreted within the limitations of our data collection methods. Conducting recruitment and research through local NGOs suggests that those who participated may have had trust in community-based services and medical care, as well as familiarity with HIV prevention methods. Therefore, our findings may not be generalizable to WESW-UD who remain unlinked to NGOs. Our findings may also have been subject to response biases, through which participants may have expressed more positive attitudes towards PrEP than they believed in the presence of an interviewer. Additionally, we were unable to guarantee that participants joined the interviews and focus groups in a private surrounding: Participants may have adapted responses in case they were overheard by friends or family. However, the use of online interviews and focus groups may have made it easier for some women to participate, particularly those with transportation or other structural barriers that may have hindered them from taking part in an in-person interview at the NGO or other research site. The use of audio-only (no video) data collection through Zoom/Jitsi software, may also have encouraged participants to speak more openly about their experiences than they may have in a face-to-face setting.

CONCLUSIONS

As Kazakhstan’s scale-up of PrEP continues, it is imperative to center WESW-UD in this effort. Our findings have highlighted the importance of PrEP messaging and programming that is both flexible and tailored to specific needs of this population. These approaches must consider socio-structural barriers faced by WESW who use drugs, including stigma, provider discrimination, and healthcare access, to ensure that already-growing disparities in PrEP uptake are not perpetuated. There is a need for rigorous testing of PrEP-related communications and interventions to support WESW-UD along the entire PrEP continuum: increasing PrEP awareness, acceptability, uptake, and adherence. Such strategies must employ creative approaches such as those mentioned above (technology-based solutions such as e-health and m-health, and social network strategies). In addition, there is a need for research into structural and organizational intervention strategies that may facilitate PrEP uptake. Providing PrEP through AIDS Centers alone is likely to have a limited impact, and research is needed into differentiated service delivery. There is also a need to conduct research among Kazakhstan’s medical and social service workforce (doctors, nurses, NGO staff), and their awareness, beliefs, and actions surrounding PrEP promotion for WESW-UD. Only by understanding multiple levels of barriers to PrEP uptake and by taking a comprehensive approach to rollout can we work to ensure this vital biomedical prevention will reach this key population.