HIV Self-testing

The majority of FGD participants reported working in the hospitality and service industries as club performers. Some reported engaging in sex work, and the rest reported being students. None of the participants had previously used HIVST as it was not generally available.

Most participants agreed that having more, free-of-charge options for HIV testing would increase the rates of people choosing to know their status. It was noted that some members of MSM and TG communities might prefer HIVST, such as people whose schedules do not allow time to go to hospitals for HTS. At the same time, most participants were reluctant to support the idea of widespread HIVST as they felt that HIVST would not promote positive behavior change, and testing on one’s own could provoke feelings of isolation and loneliness. Some participants suggested that people might be embarrassed to purchase self-test kits at a pharmacy. Concerns were also expressed about test accuracy and reliability of results due to lack of technical knowledge about how to do the self-test. Some participants reported having more confidence in traditional HTS delivered by counsellors at health facilities. In addition, it was reported that poor health-seeking behaviors and the competing priorities and concerns of daily life lead many in the MSM and TG communities to not prioritize HIV prevention;¹ for those people, HIVST would also not be seen as a priority.

The cons seemed to outweigh the pros in the opinions of MSM participants.

“I think every option is good especially for those who are busy or have no access to normal services. But these people need to be worldly, educated and prepared for any result. They need to understand what “window period” is, and about how HIV is transmitted. I would be worried they might experience depression or denial. Having an HIV test is hard enough let alone doing it [alone]. I don’t think Indonesia, including Bali, is prepared for this.” MSM, 26+ years old

Transgender participants expressed concern that HIVST may not provide access to counselling and supplementary services such as condoms and lubricants. They worried about cost and the potential for discrimination from pharmacy staff if kits were to be sold over the counter:

“If they are going to sell it at the pharmacy, the pharmacy staff should be trained not to discriminate; it would need to be free.” Transgender woman, 18–25 years old

Key Informants felt HIVST would be acceptable to a certain segment of the MSM and transgender communities—those with sufficient knowledge about the test, confidence and concern about confidentiality, and those “wanting to get over the hurdle for the first time”. The population who might prefer HIVST is not yet clearly defined, except that they are hard to reach through the usual programmes, or disinclined to seek HIVST. Those already receiving free services for VCCT (or HTS) are unlikely to choose HIVST. There was also concern about monitoring and reporting results.

Partner notification

None of the participants reported having been offered PN, though four were living with HIV. For those in stable or open partnerships, the concept of couples counselling or mediated PN was preferred to anonymous notification through a medium like text/internet messaging. This was because feelings of trust had been built through the relationship and they felt they could handle the information together, compared to an SMS informing the partner. Automated text messaging could be better received, for example a generic message requesting a return call for more information, compared to one that would state the HIV test result.

Fear of retribution and reprisal from the recipient of the notification message was of great concern for transgender women, particularly those that support themselves through sex work.

“For our own partner it is OK. But as a sex worker it could end up really badly.” Transgender woman, 26 years

“For me as a sex worker I don’t think it is very useful. I can’t remember who I slept with last and we don’t share contact details.” Transgender woman, no age given

For MSM, the nature of the community and the manner in which members of the community interact were raised as concerns. If there is ‘gossip’ and scandal mongering, the introduction of PN may not be easily accepted.

New technologies have also made it easier to hook up for sex while maintaining anonymity, or constructing an alternative identity or image. These types of relationships make it difficult to consider PN.

“With social media now we can find a sexual partner with no strings attached and we also have no idea of their real name or contact details. No way of tracing them. More often than not the details they provide are fake anyway.” Outreach worker, age not given

Key informants supported the idea of PN being introduced along with HIVST. They stressed the need for prudence and circumspection, including the approaches and the ways in which messages are disseminated. Staff and health-care providers need to be trained to convey the message and to manage data in a way that ensures confidentiality. All participants felt that PN should be voluntary.

HIV Self-testing

FGD participants included students, sex workers, dancers, NGO workers, makeup artists, and family business owners. None of the participants had experienced HIVST. The generally low awareness about HIV, misinformation and high levels of stigma in the country were seen as barriers not just to HIVST but to HTS in general.

“…people think HIV is transmitted only through bad sex habits [so] anybody going for [HIV] test would be considered into bad [sexual] activities causing need for [such] tests. Here [in CBO] we are relaxed because this is community serving the community and we are not judged about our sexual activities.” MSM and TG, mixed ages

Participants noted that public awareness on HIV is needed to reduce stigma around HIV and HTS. A desire for confidentiality was thought to be the main reason for undergoing HIVST.

Preferences regarding how and where HIVST should be done varied. Most MSM are thought to be affluent, closeted, married and with access to technology. They favored using internet, social media, video links, and group training sessions at the CBO on how to conduct the self-test, how to interpret the results and post-test follow-up. Participants felt that helplines are a useful tool for providing HIV information. Transgender participants, on the other hand, reported a preference for face-to-face interaction with a counsellor for HIVST.

Participants raised concerns about the psychological and emotional implications of doing a self-test and getting a reactive result. Both MSM and TG participants reported a concern about an increase in suicide if people test alone without professional help; some recalled receiving a positive result and feeling that they had nowhere to go.

The participants emphasized that HIVST should be available free of charge and through CBOs.

“They [outreach workers] should distribute self-test kits as they distribute condoms…” MSM, no age given

”This [CBO] is the only place where we come freely because we know everybody here, they guide us and we make good decisions about our health. We can trust [self-testing] if available here.” Transgender woman, no age given

Key informants² thought that there was currently no demand for HIVST.

“[HIVST] is something we cannot even think of happening in Pakistan unless promoted widely.” Key informant, age not given

“Lack of awareness about HIV and need for getting tested is a major hurdle. Although HIV is in Pakistan, doctors deny it. Who would accept HIV self-testing in such a bad condition?” Key informant, age not given

Participants noted that HIVST is not part of the national strategy for HTS, and this lack of recognition could be a barrier to its introduction.

“HIVST is not mentioned in the new national strategy for HTS. The system is already in transition, and it cannot afford to bear the burden of a completely new thing like HIVST… our AIDS Control managers are not going to even listen….” Key informant, age not given

Partner notification

Five (of 17) FGD participants had been offered or experienced PN; three were HIV-positive. Most participants indicated they would prefer not to disclose their HIV status to their partners. Members of MSM and TG communities change their sex partners frequently, making it difficult for the counsellor to facilitate PN. Participants consider sharing one’s HIV-positive status within health-care settings a big risk. They reported that doctors are not well informed about modes of transmission. Furthermore, participants noted that many doctors, while serving known PLHIV, avoid touching patients during examination, thus fueling stigma and misconceptions.

In contrast, key informants stressed the importance of PN as a key factor in the success of HIV prevention programs. One interview participant cited poor quality of counselling in HTS as inimical to PN. This is often due to health staff being overburdened and inadequately trained.

In Pakistan, hijra (transgender or ‘third gender’ people) households, known as ‘deras’, community organizations and NGOs serving the hijra population are key stakeholders with a critical role in supporting PN. Dera households are headed by ‘gurus’, who serve as an important form of family, peer, social and community support for hijras. The acceptance or non-acceptance of HIV-positive hijras, as well as PN and HIV testing in the dera, supported by gurus and other leaders, is key to a wider acceptance of both HIVST and PN within these communities.

“We can share with our gurus only… when they are completely aware of the sensitivities related to HIV and AIDS. Otherwise, there are chances of social boycott because no one would like to keep an HIV- positive person in her dera due to fear of being isolated from the rest of hijra community. Other than safety, this social boycott can lead to financial loss also…” Hijra, age not given

HIV Self-testing

FGD groups included students, workers (services, administration, medical), and some people who were unemployed.

Only two participants below 25 years of age had experienced HIVST. They had access to rapid diagnostic tests (RDT) and were familiar with the techniques to perform it. However, they recalled being tense and apprehensive, and they expressed a preference to speak with a counsellor, before and after the test. Most participants were aware of HIVST and the availability of kits online; participants mentioned three websites where HIVST is available.

Participants expressed concerns about test accuracy and about the need for having confirmation of the test results. They wondered if a prescription would be needed to buy the kit at a pharmacy. They also expressed concern about judgmental pharmacy clerks.

Advantages of HIVST mentioned by participants included privacy and confidentiality, and being able to do the test in the comfort of home. However, a disadvantage in the event of a reactive result would be uncertainty about next steps.

Young MSM and TG saw HIVST as “double-edged”—it could be helpful, but if the client is unprepared and is not educated about the test and follow-up, it could cause problems.

Some participants suggested different ways to do the test (e.g., saliva is preferred). Several expressed preference for having the self-test available at the Social Hygiene Clinic testing facilities alongside traditional HTS.

”There should be counselling and proper marketing [of the test, and] referrals [including contact information and next steps] should be part of the package; the packaging must be right, information readable and easily understandable.” TG, 26+ years

Partner notification

Five participants (of 16) had been offered or experienced PN, and six were living with HIV. For young MSM and TG, the context of the relationship and circumstances of notification are important to consider if there is a possibility of abuse or exploitation and protective support is required. Sometimes there is no choice but to disclose, and it can come as a shock, for example, when an opportunistic infection strikes, or the partner is hospitalized.

Participants preferred a gradual process for notifying their partners. They mentioned both passive and assisted notification, or informational seminars, which might motivate a person to seek HTS. One participant felt that the partner would need to know the basics of HIV before s/he would be prepared to have a discussion about getting tested.

“I just tell him to use a condom with any partner…when he begins to ask about HIV, then I feel is the right time…” No identifying information provided

Respondents emphasized that people in discordant relationships, where one is not aware of the other’s status, need to discuss PN. Peers can also support PN. In some cases individuals could be more motivated to have a test or notify partners in a group setting. Participants acknowledged the difficulty of notifying others and concerns about their own readiness to disclose to a partner. They were also concerned about the possibility of criminalization if they failed to disclose their HIV status to a partner—there had been recent discussions in the media about the need to review the AIDS laws and criminalize transmission—and expressed the need for clear guidelines on PN].

Young members of MSM and TG communities in the Philippines now have more opportunities to travel to other countries, and the use of social media and “hook up” applications to meet sexual partners can be a barrier to PN.

“I’m quite sure that I got HIV from a sexual encounter in Viet Nam. I wanted to inform him but I did not know how to get in touch, I only have his first name….” Young MSM, age not given

HIV Self-testing

FGD participants included students, corporate workers, hotel employees, business owners, NGO staff and freelancers. Three participants reported having used HIVST, but most participants had never heard of it. Both FGD and interview participants supported HIVST and preferred purchasing kits at a pharmacy. However, many participants questioned the accuracy of the test results, particularly if done in community settings without assistance and if distributed for free. Some expressed concerns over the lack of psychosocial support such as face-to-face pre-test information and post-test counselling.

Participants mentioned several advantages of HIVST including accessibility, anonymity, confidentially and short waiting time for results. They felt that HIVST should be available over the counter, at low cost (US$2.80–8.50). Availability at pharmacies would indicate that safety and accuracy standards are in place. Some participants preferred the option of assisted HIVST with experienced counsellors. There should be clear instructions on use of the kit and clear and up-to-date contacts for referral services (for both negative and reactive results).

“This issue [post-test counselling] is essential to minimize emotional breakdown or even self-harm after clients’ positive result is confirmed. Psychological support is integral to private HIVST—both pre- and post-test, in order to help the clients cope with the test results…” Peer educator, age not given

Participants did not think that HIVST would replace HTS, or be popular among those who regularly undergo HTS. They expressed more trust in accuracy of test results delivered through HTS compared to HIVST.

Key informants were knowledgeable about the policy and regulatory framework, and the practical aspects, as a self-testing pilot project was underway at the time of this study. They felt that HIVST in its initial stage should be entirely supervised and assisted. Future availability and accessibility in Thailand will mean changing laws and policies that prohibit non-medical professionals from using HIV testing devices. All HIVST, private or supervised, should be part of the HIV screening strategy, although opinions were divided over financing of HIVST.

“HIVST could be preferred in comparison to HTS because it’s easier to use and access, and requires no official registration. Initially, HIVST should be under the supervision of experienced workers. Demand can be created and well documented.” Key informant, age not given

“Everyone should have access to HIV testing kit, like a pregnancy test. We’ve witnessed the benefit of early testing for earliest treatment, that it has dramatically decreased [AIDS-related] morbidity and mortality. HIVST kits must be easy to use, with high accuracy, available and accessible.” Key informant, age not given

“This form of testing [HIVST kit) should be individuals’ financial responsibility, the same way one needs to pay for a pregnancy test kit. If a person prefers to know their HIV status in private even though there’s a ‘traditional’ HIV testing service available and accessible, they should pay for the extra cost.” Key informant, age not given

Partner notification

Seven participants (of 16) had been offered or experienced PN, although none openly admitted living with HIV. Participants with HIV testing experience reported that PN was by client referral, with minimal assistance, such as early treatment information, from counsellors. Most participants would be inclined to notify serious and long-term partners by themselves. Similarly, they preferred to be notified by long-term partners, for the main purpose of getting health services. Fear of rejection is the major obstacle to notifying long-term partners. Participants felt that violence is not likely to happen.

Within casual partnerships, provider referral was preferred. Providers could provide technical information on pre-exposure prophylaxis (PrEP) and early treatment, and emotional support for patients in voluntarily initiating PN.

Participants were not enthusiastic about dual referrals, insisting that partner notification should be client-initiated, especially in longer-term and/or committed relationships. Trust between provider and client plays a key role. Some participants felt that decisions to notify a partner, or accessing services after being notified, can take time, and they would prefer to make decisions on the timing of the process, which might be less feasible with dual referrals. “PN is our right. There are times when we don’t want our status known. Notifying your partner of your HIV status takes a lot trust and the ability to cope with the consequences [for] both parties, which should be solely done by clients. Providers have no rights to intervene.” Young TG woman, age not provided

HIV self-testing

In general, FGD participants and key informants from Indonesia, Philippines and Thailand were open to the introduction of HIVST as another option for HIV testing services, that could improve uptake of HIV testing. However, as HIVST has only recently been introduced, only five persons (about 10% of those who had taken an HIV test) had actually experienced self-testing. There was general consensus in all countries on the benefits of HIVST, preferences around distribution, cost considerations and the critical role of counselling and other ancillary services that are important for any form of HIVST.

• HIVST was reported to be more convenient, private and confidential, although some participants reported concerns about getting a reactive test and having no access to a counsellor, ancillary services, or information on what to do next.
• In general, HIVST kits could be distributed through existing user-friendly facilities, such as CBOs and social hygiene (STI or sexual health) clinics, rather than pharmacies. In some settings, pharmacies may be more acceptable than in others. However, younger participants feared discrimination and judgmental attitudes from pharmacy staff, in the event that HIVST kits would be available in pharmacies.
• HIVST should be provided for free or a small charge. Most participants were willing try HIVST and to pay a nominal fee (range cited in local currency the equivalent of US$ 0.30–8.50)
• Training of health-care providers and potential users in performing HIVST procedures is needed.
• Counselling, whether face-to-face, through hotlines, or online, has an especially critical role to play for HIVST.
• All participants agreed that HIVST is not likely to replace traditional HTS.

In addition to the above, key informants raised other issues:

• The need to have a better understanding of the target groups for HIVST; they felt that individuals with higher levels of education, who are better prepared to do self-testing and to understand the implications, who are concerned about confidentiality, and who have the means to pay would be the target group for HIVST
• They felt that MSM and TG who may already be accessing routine HTS would be unlikely to choose HIVST.
• In countries where HIVST pilots are ongoing (e.g. Thailand), there is a clear direction for policy advocacy, and for legalization and regulation of HIVST.

Partner notification

For members of MSM and TG communities, the type of PN approach chosen depends on the types of partners one has—casual or long-term, and the context in which people met those partners (sex work, cruising, or through hook-up applications). Having different types of partner relationships at the same time is common. For those in sex work or meeting partners casually at the outset, with no expectations of a longer-term relationship, PN was not considered by participants to be realistic or practical.

Participants noted that social and cultural environments and relationship contexts affect an individual’s decision to notify their partner(s) and should be taken into account when discussing PN methods and strategies. However, the provider does not select the method for the client—it is important that all methods available are discussed with each client, and they should be allowed to choose. Participants felt that PN should be client-initiated, with minimal assistance from providers. Some participants stated that trust between provider and patients must be firmly established before PN is discussed and initiated. Furthermore, participants felt that PN should be voluntary and done only with the consent of the person providing the names and contact details of the partners. In cases of assisted PN, or with provider-initiated notification, proper training for health staff was considered by participants to be important.

The HIV-positive status of the notifying partner was seen as a very important factor to consider, as this could affect the nature of the relationship of the partners. There was ambivalence about the role that community groups could play in the notification process itself; if there was lack of trust in community groups and gossip was suspected, this could be detrimental to PN efforts. However, it seemed that PN was discussed more openly in PLHIV groups. Participants felt that automated mechanisms (i.e., generic messaging) might also have a role in PN.

HIV Self-testing

1. Continue HTS advocacy and include HIVST as an option and alternative way of knowing one’s status. Integrate HIVST into HTS where possible.

2. Cost of HIVST kits should be affordable or partly subsidized to reduce barriers to access.

3. Regulation and quality assurance of HIVST kits and the information and instructions provided, including local contact information for referrals.

4. Back-up support (assisted HIVST) should be available. Options for access to counsellors and/or medical and health professionals, either online or face-to-face can be made available prior to the test and after the results are received, regardless of whether reactive or non-reactive.

5. Helplines should be considered.

6. There need to be clear referral pathways into the “care cascade” and linkages to ancillary services (STI diagnosis and treatment, SRH services)

7. Individual profiling at point-of-purchase, to provide information on customers, as this is a relatively ‘unknown’ population. Such information should be collected voluntarily and anonymously, to include:

• Demographic information such as age, sex, gender, occupation/work, education level, income level
• Date and instance of last risk behavior
• Knowledge of ‘window period’
• Previous experience of HTS; previous self-testing experience
• Knowledge of what to do if test result is reactive or non-reactive

8. Orient face-to-face distributors of HIVST kits to treat all customers equally, and to reduce judgmental attitudes towards young customers, particularly gay or other MSM and transgender people.

9. Review legal and age requirements for HTS, including circumstances under which RDTs and HIVST can be carried out.

10. Develop monitoring mechanisms (such as online sales, sites, costs, utilization).

11. Ensure that HIVST is not used coercively (i.e., where people may be tested against their will and without consent).

Partner notification

1. Social and cultural environments and relationship contexts should be taken into account when discussing PN methods/strategies with HIV-positive clients, so that a preferred notification type is chosen by the client for each partner.

2. Acknowledge that PN strategies may be based on relationship status (i.e., permanent/long-term partner relationships and short-term or casual relationships) but that these may be fluid, and that for many, these types of relationships coexist at the same time.

3. Trained counsellors should acknowledge, help verbalize and allay fears and concerns, offer support for assisted notification if necessary.

4. Involve key stakeholders in specific communities (i.e., gurus, dera, peer educators and leaders) in advocacy for supportive environments for PN and for sensitization about treatment and other support services

5. PN should be done with the index person’s consent, with assistance to be offered from providers.

6. Trust between provider and clients must be firmly established before PN is discussed and initiated.

7. There is a role for automated, generic text messaging to inform partners about the need to seek advice, or link with a counsellor. Specific messages to individuals that specify a HIV test result, for example, are not recommended.

8. PN should be linked to support services: counselling, PEP, PrEP, ART, STI treatment and other interventions and commodities for HIV prevention, care, support and treatment.