Introduction

There has been an 84% increase in new HIV infections in Pakistan between 2010 and 2020 [1]. Despite the increase, less than a quarter (22%) of all people living with HIV (PLHIV) were aware of their HIV status in 2020, and only 12% of PLHIV were on antiretroviral treatment (ART) [1]. Transgender people (TGs), known locally as “hijra,” “zenana,” or “khusra,” are a key population group as defined by the World Health Organization (WHO) [2] and are among the highest risk groups for HIV in Pakistan. According to UNAIDS estimates, [3] HIV prevalence among TGs in 2020 was estimated to be 5.5%. Awareness of and access to HIV services, including HIV testing, remain low among TG. According to national behavioral surveillance, in 2016–2017, only a third (34%) of all TGs reported having ever tested for HIV, and less than half (43%) know where to get tested for HIV [4]. In addition to structural barriers, stigma, and discrimination toward key populations in the society and health settings, criminalization of their behaviors contributes to low uptake of services [3, 5].

Currently, community-based HIV testing services and mobile outreach by non-governmental and community-based organizations are the primary HIV testing approach used for key populations in Pakistan, including TGs. Typically, outreach workers offer rapid testing to key populations in the community through mobile outreach in hotspots. Those with reactive rapid test results are referred to HIV testing sites or ART centers for further testing and linkage. National programmes focusing specifically on TGs are non-existent and limited to small projects funded mainly by the Global Fund (GF).

HIV self-testing (HIVST) is a process in which a person collects their specimen (oral fluid or blood) using a simple, rapid HIV test and then performs the test and interprets their result at the place and time of their convenience [6]. The World Health Organization (WHO) has recommended HIVST as an HIV testing approach first in 2016 and an updated recommendation in 2019 [6]. Most lay users can perform HIVST accurately without the need for additional support [7]. However, where needed, a range of support options are available such as video-based demonstrations, in-person observation or supervision, or real-time virtual support through digital platforms [6]. HIVST is an effective approach for reaching undiagnosed people and first-time testers among the general and key population elsewhere [8, 9]. However, TGs are underrepresented in HIVST research globally, with limited lessons on optimal ways to implement this intervention among TGs. Globally, 94 countries had supportive HIVST policies in 2020, and half of them (48) are now routinely implementing HIVST. In the WHO’s Eastern Mediterranean Region, only four countries have reported adopting HIVST policies as of 2020, namely Iran, Lebanon, Morocco, and Pakistan. Three of these are piloting HIVST on a small scale to inform broader implementation, and only one country (Lebanon) is routinely implementing it [10]. During the COVID-19 epidemic, HIVST has emerged as an important approach to maintaining HIV testing services [11].

Although HIVST has been included in the national policy in Pakistan since 2018, to date, neither implementation has taken place, nor have any products registered. HIVST response in Pakistan is primarily externally donor funded. In 2018, the national programme and other partners organized a national consultation on HIVST, which supported the introduction of HIVST and led to the developing of a roadmap in this direction. However, there has been no progress to date, given the lack of resources. The national programme and other partners are now working collectively to introduce HIVST in 2022.

To support the process and selection of optimal models, we conducted a pilot project in Pakistan to assess the acceptability and feasibility of peer-led HIVST distribution among TGs. This is the first HIVST pilot in Pakistan, focusing on a priority population with limited access to services and no evidence of formative research conducted within this key population group.

Methods

Results

Between November 2020 and February 2021, 156 TGs were approached for participation. Of these 150 eligible participants were recruited. There were six refusals. The average age of participants was 25.5 years (standard deviation: 7.0).

Out of 150, 52 (34.7%) had no formal education. Participants reported an average of 11 sexual partners in the last month and an average of 12 receptive anal sex acts in the last three months. Thirty-eight (23.5%) participants reported condom use at last sexual act (Table 1). Of all participants, 58 (38.6%) were first time testers and 67 (42.9%) had an HIV test less than three months ago (Table 2).

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Table 1. Demographic details of TGs in Larkana.

https://doi.org/10.1371/journal.pone.0270857.t001

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Table 2. Sexual behaviors, HIV perception and HIV testing and acceptability of HIVST.

https://doi.org/10.1371/journal.pone.0270857.t002

All participants reported using their HIVST kit within three days, with 134 (89%) reported they used it within two days. Majority of the participants 141 (94%) performed HIVST at their homes while remaining 9 (6%) performed HIVST kit at the CBO office. Majority of participants 139, 92.6%) were able to perform HIVST with instructions for use and video provided, and 11 (7.3%) requested assistance during testing.

Four participants (2.6%) reported reactive HIVST result. All four were accompanied to a testing center by a peer outreach worker and all were confirmed HIV positive. All four were linked to HIV treatment at the ART Center within five working days.

In response to open ended follow up questions related to HIVST use and acceptability, 139 (92.6%) reported oral HIVST to be an acceptable HIV testing approach. Seventeen (11.3%) participants had expressed initial concerns and anxiety about the use of self-testing but found the overall HIVST process to be satisfactory. On further probing it was informed that their concern was related to their ability to use the self-test kit on their own. All respondents had later informed that they were able to use the HIVST kits without much difficulty.

Majority of participants (94%) found instructions for use easy to understand. Many 137 (91.3%) preferred oral fluid based HIVST as being the preferred type of test. Most of the participants145 (96.6%) found peer outreach worker based model to be acceptable.

We had also inquired from the ORWs and the head of CBO about the feasibility of implementing a peer led approach for HIVST among TGs and other key population groups and the unanimous response was that it is quite feasible to implement it.

Discussion

This is the first HIVST research in Pakistan where participants performed HIVST. This is also one of the few HIVST studies conducted among TGs. Peer-based HIVST distribution was found to be feasible and acceptable among TGs in a non-urban setting. The majority of participants could perform HIVST with instructions provided without the need for additional assistance. Many participants were first time testers, and four new HIV infections were diagnosed and linked to ART.

The idea to adopt HIVST in Pakistan is not new. In 2018, a national stakeholder workshop was held under the leadership of national AIDS programme which supported the introduction of innovative interventions including HIVST and PrEP to address the growing epidemic and a roadmap was developed [16]. However, implementation lagged. Our findings can inform the future roll out of HIVST in the country. HIVST introduction needs to be prioritized in the context of COVID-19 pandemic. WHO EMR reviewed the impact of COVID-19 on HIV testing in the region and found that the number of HIV tests performed in 2020 were 3,552,819 compared to 8,844,382 in 2019 [17]. The COVID-19 pandemic played a key role in reducing the number of tests because of lockdown measures, conversion of testing infrastructure in the countries towards COVID-19 testing and also reallocation of resources. HIVST has emerged as one of key strategies to address HTS disruptions during COVID-19 and many programmes successfully scaled it to ensure service continuity [11]. Key stakeholder such as the National AIDS Control Programme needs to proactively pursue registration of HIVST kits with Drug Regulatory Authority of Pakistan (DRAP) which will pave the way for the availability of the product across the country.

Our findings support peer-delivered HIVST kits as an acceptable and feasible approach for reaching TG population. Many TGs had expressed their preference for oral based HIVST. They were of the view that a finger prick causes pain, and they would not like to go through the pain even if for a few seconds.

Peer outreach workers are an integral part of routine community based service delivery in Pakistan. Peer and community led approaches for HIVST have been successfully implemented among the key population in different parts of the world. Okoboi [18], Wirtz [19] and Adeagbo [20] have used this approach for HIVST distribution in Uganda, Myanmar and South Africa. In Pakistan, with additional training they can be capacitated to distribute HIVST kits in the community and support linkage. In our study a total of five trained outreach workers who received a nominal allowance, mobile phone credit and transportation (for clients) successfully reached out to 150 peers in a relatively short time period. For routine implementation they should be adequately renumerated, or it could be part of their core function to ensure sustainability.

After the 2019 HIV outbreak, a mass testing campaign was initiated [21] where a number of factors related to HIV testing were overlooked [22] ranging from lack of pre and posttest counseling and ethical considerations related to privacy and confidentiality (also from personal communication with AAS, field manager of an NGO based community engagement project in Ratodero). The availability of HIVST in such a scenario would have helped in alleviating some of those concerns.

Global evidence suggests that linkage to care among those diagnosed HIV-positive after HIVST is similar to standard HTS [8, 9]. In our study, with support from peer outreach workers, all those who had a reactive HIVST result received confirmatory testing and were linked to care. These findings are consistent with evidence from other settings showing peer navigation can improve linkage to care with HIVST compared to HIVST alone [8, 23]. Where feasible such approaches can be considered to improve linkage. Nevertheless, delayed initiation of ART and challenges related to access to treatment and care by PLHIV and key population have been documented in Pakistan [24–26]. It is only prudent to timely address these issues in order to increase the number of HIV positive persons receiving treatment and care. HIVST can also help in increasing the testing rates, particularly among the key population who are residing in rural settings such as Larkana and its adjoining areas.

Our study has some limitations. First, we recruited a small convenience sample of TGs, second, the setting was a non-urban one. Thus findings may not be directly applicable to all settings or key populations. We are also mindful of the selection and response bias that a convenient sample can cause. We provided free HIVST kits and a small incentive to participants as well as to peer workers. The element of self-reporting bias also exists. We are not sure if results will be similar in real world setting in the absence of incentives or if key populations have to pay for HIVST kits. A key concern related to HIVST is social harm and the possibility of committing suicide after receiving a reactive result. Unfortunately, we were unable to assess for suicidal ideation in our study. To maximize the uptake and benefit of HIVST kits to the key population it is pertinent that these kits are affordable, preferably free of cost.

In summary, this demonstration project has provided much-needed local and context specific evidence which supports HIVST availability to key populations and its acceptability among TGs. National programmes and implementers can use the information for effective programming especially the peer or community based approach for HIVST distribution. HIVST availability should be prioritized for key populations in Pakistan. Further implementation can generate lessons for other populations and relevant delivery models.

Supporting information