2.1.1. Secondary Quantitative Data Analyses

GMHR 2012 included a global online survey to assess availability of and access to STI and HIV testing and prevention services among MSM across eight regions.

From 23 April to 20 August 2012, we recruited a global convenience sample of MSM to complete the 30-minute online survey. Survey participants were recruited via the MSMGF's networks of community-based organizations focused on advocacy, health, and social services for MSM. The MSMGF sent email blasts advertising the survey to its approximately 3,500 online members who represent 1,500 organizations in over 150 countries. Partner organizations also disseminated information about the survey through their respective regional and global list-serves, as well as to local MSM through word of mouth. In addition, the MSMGF recruited participants from online social networking sites popular with MSM in Africa, Asia, Europe and Latin America. Participation in the survey was completely voluntary and anonymous.

2.1.2. Secondary Qualitative Analyses: Focus Group Discussions

In 2012, the MSMGF worked with the African Men for Sexual Health and Rights (AMSHeR) and local partner organizations in South Africa, Kenya, and Nigeria to conduct focus group discussions with MSM in Pretoria, Johannesburg, Nairobi, Lagos, and Abuja. A total of 71 MSM participated across 5 focus groups. In order to protect the confidentiality of the participants, demographic information was not collected.

For purposes of this overview, findings relevant to values and preferences regarding use of ART as prevention were reviewed and summarized.

3.1.1. Secondary Quantitative Analyses Findings

There were 4,005 respondents included in this analysis. Of these, 17% were 24 years of age or younger and 81% had post-secondary education. There was a broad representation of regions, with 80% of respondents residing in Western Europe, Northern Europe and North America; Asia (25%); Eastern Europe and Central Asia (16%); and Latin America (14%). The rest of the participants resided in Sub-Saharan Africa (10%); Oceania (6%); Middle-East and North Africa (2%); and the Caribbean (2%). Half of the respondents reported having middle to high income, and one fifth (18%) had low or no income.

3.1.2. Secondary Qualitative Analyses: Focus Group Discussions Findings

All focus group participants were MSM. During the course of the five focus group discussions, it also became evident that all focus groups included some men living with HIV. Participants came from a broad range of age groups and education level, as well as from both urban and rural settings.

Structural barriers of access to HIV services included criminalization of homosexuality, high levels of stigma and discrimination, homophobia in health care systems, and poverty. These barriers create an environment where blackmail, extortion, discrimination, and violence against MSM are allowed to persist. MSM are forced to hide their sexual behavior from health care providers, employers, landlords, teachers, and family in order to protect themselves and maintain a minimum livelihood.

The inability of MSM to reveal their sexual behavior to health care providers was associated with misdiagnosis, delayed diagnosis, and delayed treatment, leading to poor health prognosis and higher risk of transmitting HIV and other sexually transmitted infections to partners.

Conversely, negative consequences of structural barriers were moderated by the existence of safe spaces to meet other MSM, safe spaces to receive services, access to competent mental health care, and access to comprehensive health care.

Participants described the community-based organizations where the focus groups took place as examples of safe spaces where they could be themselves, receive respectful and knowledgeable health care, and in some cases receive mental health services—all of which bolstered their self-esteem and increased their motivation to take care of themselves and each other.

PEP and PrEP discussions revealed that men had little knowledge about either one. Where knowledge existed, there was often confusion about the distinction between them and when or why to use them (except one physician and one researcher). After a brief definition of PEP, most participants noted never having been offered PEP and expressed a high desire to have it made available through gay-friendly CBOs. Most said they would take it if it were available and free or low cost, and if offered in a safe location, such as the CBOs where the consultation took place. They also highlighted the need for strong education campaigns regarding PEP in the context of other prevention strategies.

After a brief definition of PrEP, many men responded favorably to the idea of using PrEP. However, as men inquired further about the evidence for efficacy, safety and use, their enthusiasm declined. Narratives regarding PrEP in all five focus groups turned toward concerns about introducing PrEP in the contexts of their respective cities where homophobia is rampant, HIV service providers treat MSM poorly, access to basic HIV services is limited, and fear of disclosure is high. Men in the focus groups concluded that it was inappropriate to offer PrEP without first addressing concerns about: Safety (MSM disclosure by association and stigma), Disinhibition (“men will over-rely on PrEP and stop using condoms”); Cost (“Not enough money for ART for PLWH, let alone PrEP”); Resistance (“people who seroconvert will have one fewer ART regimen option”); Adherence (“men already share ART with other PLWH, or run out of pills, or spread out the dosage so it will last longer”); and Lack of Awareness and Knowledge (“there is too much confusion about ART, PEP and PrEP”; “people do not know one from the other”, “Some people think “ART is a cure”).

Nonetheless, most men noted that if PrEP were to become available, AND if structural and social issues were addressed, they would consider taking PrEP themselves or recommending it to others. Few men asserted that there was nothing that would convince them to take PrEP.

3.2.1. HIV Services

Barriers to accessing HIV services included the following:

• Policy and Legal
  • Criminalization of homosexuality
  • Lack of legal protections for MSM
• Institutional
  • Police harassment independent of legal rights
  • Legal authorities' failure to protect MSM from violence or discrimination
  • Provider sexual stigma and discrimination
  • Provider HIV stigma
  • Provider lack of knowledge regarding MSM sexual health
  • Provider lack of training regarding HIV
  • Meta messages portraying MSM as HIV disease
  • Lack of safe spaces to socialize
  • Lack of safe spaces to have sex
• Social / interpersonal
  • Societal sexual stigma and discrimination
  • Societal HIV stigma and discrimination
  • Family rejection
  • Sexual violence (targeting young boys deemed to be MSM)
• Individual
  • Fear of disclosure—sexuality or HIV status
  • Internalization of societal homophobic attitudes towards MSM
  • Psychological distress (depression, anxiety, shame, low self-esteem)
  • Suicidality

Facilitators to accessing HIV services included the following:

• Policy and Legal
  • Laws that protect rights of MSM
  • Policies that recognize and provide equal rights and privileges to MSM
• Institutional
  • Safe spaces where men can socialize
  • Safe spaces where men can express their sexuality with another man/men
  • Comprehensive health services that include but are not limited to HIV services
  • Mental health care services provided by trained psychologists or other mental health providers to address, psychological distress, histories of sexual violence & suicidality
  • Trained and non-judgmental health providers
• Social / interpersonal
  • Community engagement
  • Freedom to be open about homosexuality in public
  • Accepting sexual norms
  • Family reunification programs
• Individual
  • Feeling free to be “out”
  • Knowledge about HIV services and resources
  • Self esteem regarding sexuality

3.2.2. Values and Preferences Regarding Use of ARVs as Prevention

All participants indicated that ART was readily available in urban settings where they lived, and less so in rural settings. Barriers to accessing ART was related primarily to fear of disclosure to family, co-workers or friends about HIV positive serostatus and, in some case, disclosure of being MSM.

Participants noted that early initiation of ART as a prevention strategy was endorsed by all their respective countries and in most, this policy was implemented. However, in countries with limited investment in HIV services, participants stated that it was difficult enough to provide ART for patients with CD4 counts of 250 or lower, such that providing ART at 500 CD4 counts was rare.

Similarly, participants were enthusiastic about the use of PEP. PEP was available in all countries, mostly through National AIDS programs. However, in some countries it was accessible to very few, primarily hospital and clinic health providers. In these settings, PEP knowledge is very low among MSM and accessing it is very difficult unless one pays for it and knows someone who will provide it. Additionally, in some countries where PEP is available, presumably for all who might need it, PEP providers judge MSM harshly if they ask for it and sometimes refuse to provide PEP. In countries where it is widely available, participants recommend accessing it through MSM-friendly CBOs and clinics to avoid judgment.

Participants had mixed thoughts about the use of PrEP. Although all participants were hopeful about PrEP as an added prevention tool among others, they all harbored serious concerns about implementing it in contexts with:

• high levels of sexual and HIV stigma,
• poor provider training regarding MSM sexual health and HIV,
• high provider stigma toward MSM and PLWH,
• poor access to HIV services generally,
• infrastructures that are suffering to provide basic services and treatment,
• limited knowledge about ART generally,
• lack of social support, and
• lack of legal protections for MSM

As a result, participants advised against its use in current settings unless these concerns were addressed. In particular, participants advocated for improvements for the availability of and access to:

• Comprehensive health care provision including:
  • Sexual health services
  • HIV-specific services
  • Mental health services
• Inclusion of LGBTQ- or MSM-specific CBO expertise in designing programs
• ART- and PrEP-specific education campaigns
• Infrastructure development and capacity building to support PrEP implementation
• Follow-up protocols to address adherence to ART and eventually PrEP
• Safe spaces for community engagement and social programs for MSM

3.2.3. Conclusions: 2014 In-depth Individual Interviews Findings

The findings from the in-depth individual interviews further elucidate the quantitative and qualitative 2012 GMHR study findings. Consistent with the GMHR findings, the individual interviews reflected a high level of enthusiasm for ART-based prevention strategies, including early ART initiation, PEP and PrEP. However, as with the GMHR results, participants had serious concerns about implementing PrEP without careful consideration of the contexts where PrEP might be introduced. Participants stressed the importance of assessing and, based on results, addressing: local levels of sexual and HIV stigma; provider attitudes and knowledge about MSM sexual health needs; availability accessibility and use of basic HIV services; knowledge about ART-based prevention strategies; community engagement, safety, and legal protections for MSM. Overall, participants were between willing and eager to support PrEP implementation to the extent that these concerns are addressed.

Pre-exposure prophylaxis (PrEP)

Ten of 32 respondents had not heard of PrEP or were not sure of what it involved. Eight respondents expressed positive views about PrEP as an HIV preventive option, although 4 of them acknowledged that they did not know very much about it. Four respondents' views were positive but with reservations. Fourteen respondents were unequivocally opposed to PrEP, while only 1 of a group of 11 young injectors spoke favourably about the intervention, the others expressing concerns or ambivalence.

In general, respondents were uncomfortable with an intervention that is imposed on individuals for the public's health.

“The possibly negative effect on the individual's health and wellbeing is not being considered as having the same value as the public health benefit. There is the old narrative about drug users as disease transmitters, and there's not enough attention to the needs of drug users as individual human beings and whether this intervention has real benefits for the individual who injects drugs.”

“[Many PWID] understand PrEP as a way to put the responsibility on drug users (with all of the implications they have to face in terms of toxicity, side effects, daily meds) rather than a collective, societal effort [to promote harm reduction].”

“In the EECA region [eastern Europe and central Asia], people are deeply alarmed by the possibility of their governments picking up on PrEP. [It] raises a whole series of human rights threats and risks: registries that could be shared with the police, compulsory attendance, a whole range of potential human rights infringements …”

“What are the side effects, what is the potential toxicity and what are the alternatives? An individual should have all the information to weigh the pros and cons, the toxicity, side effects, daily burden of meds as well as the benefits (which are more for the public's health than for the individual's).”

Three individuals expressed unqualified support for PrEP. One person lives in a setting where HIV prevention and harm reduction services are easily accessible, acceptable and affordable. While acknowledging that access to ART for those who are eligible is still inadequate, this person felt that any opportunity for protection against acquiring HIV would be desirable (this respondent is living with HIV). At the same time, this person believes that the acceptability of PrEP would depend on an individual's comfort in society – a person who is vulnerable due to homelessness or social isolation might be less willing to engage with health services in order to access PrEP. One person who lives in a setting where criminalisation is a significant barrier to health services for PWID, and harm reduction is not easily accessible, had not heard much about it, but he felt that “the more degrees of protection the better”. One member of a group of young injectors felt that it would be a good thing “if I felt that I was continually putting myself at risk”.

Four respondents who support the idea of PrEP live or work in countries where criminalisation of drug use creates a context of persistent and acute fear, and where harm reduction is largely unavailable or difficult to access; however, they emphatically qualified their views in terms of:

• Uncertain feasibility in contexts where PWID are reluctant to access health services in general;
• Unlikelihood in contexts where there are major barriers to ART and significant shortfalls in coverage, even for those who are currently eligible;
• Current lack of awareness and information about this option; there would need to be full information about how PrEP works, the implications for adherence and resistance and costs to individuals;
• The chaotic quality of most injectors' lives, which creates challenges for engagement with health care in general and adherence to ART or any other medical protocol even when it is needed as treatment for HIV or other health issues;
• The aversion to being associated with the HIV-positive community, which could add more stigma to already highly marginalized lives;
• Other more pressing needs for human rights shelter, food, health care, HIV treatment for PLHIV.

“If some doctors would prescribe PrEP for PWID, it would be really useful to prevent new infection. But in many EECA countries, to get PrEP a person would need to go to a doctor at the AIDS center, which is a horrible place, and to get there takes so much effort and is so connected to stigma and discrimination. And these doctors do not see drug users as clients, they see them as drug users, people who will not take these medications, will just sell it or whatever …”

“PWID are not even aware [of PrEP] in eastern Europe. The situation is catastrophic. HIV-positive people cannot get ART, nobody discusses PrEP or PEP … not even service providers. In eastern Europe, [PWID are not an issue] until people are dying of overdose. There is not basic health for this community, so it's too early to talk about PrEP. Some doctors and experts are discussing it, but people are hungry and they are homeless and they are just dying in the streets, so PrEP would not even be an option for them. It's not a priority.

“It may be an option for some people but not for all. It has to be people who are going to take the treatment responsibly and look after their health. It sounds like a good idea, but he reality is in order to take medication, you need food, water, shelter, etc. Maybe PrEP is not a good idea unless people have the other conditions of life.”

“The challenge is that the people who could most benefit from PrEP are the [the people with the] most chaotic [lives], which in many cases are the people who would be least likely to comply with the programme—that's the contradiction.”

Among the young PWID who participated in a group discussion, most⁴ were averse to the idea of a protocol that required daily medication, although some suggested that they might take it if there were an ‘incentive’.⁵

Fourteen other respondents were opposed to the idea of PrEP as an intervention for the PWID community at this time. Their views ranged from unequivocal rejection of the notion that ARVs should be used as a preventive intervention in light of continued shortfalls in access to ART for eligible PLHIV, to opposition to what is seen as a ‘medicalization’ of harm reduction, to a concern that HIV-negative PWID in some settings where awareness and understanding are very low would suffer additional stigma and harassment if they were to start taking an HIV-related drug regimen.

“Until we have the other interventions scaled up, I think PrEP is a step too far.”

“I am completely and utterly opposed to the use of PrEP for injecting drug users … supporting the use of PrEP for non-positive injecting drug users is … obscene. Until we have 100% treatment access for HIV-positive injecting drug users, [we should not have] discussions about the use of PReP for non-positive injecting drug users.”

“It's not ethical or acceptable as long as most people do not have access to the basic conditions of life and as long as diagnostics are not adequate to providing a true picture or where epidemics are and the magnitude—HIV as well as Hep C, TB, etc—to determine what drugs and what quantities are actually needed.”

“The introduction of and backing of PrEP is part of a much larger agenda to medicalize the HIV response, which poses a very serious threat to community-based preventive responses—across all communities. In the context of PWID, the bio-medical magic bullet promise of PrEP, [especially for] governments who are resistant to harm reduction, will be seen as an excuse not to scale up or introduce [proven] harm reduction programming.”

“As a health issue it might be good, but from a social perspective [in India] I don't think it would be a good idea … the stigma and discrimination would be worse for [PWID who started taking ARVs even though they are HIV-negative].”

“If IDUs take drugs for prevention this way, it would be hard to make them understand that they are not HIV-positive and it would be hard for the rest of the community and their families to understand. There is not enough information and understanding about this. As a health issue it might be good, but from a social perspective I don't think it would be a good idea.”

Three experts speculated that pharma companies might have a lot to gain from a PrEP rollout.

“In Russia, with 1.8 million injecting drug users and a government adamantly opposed to harm reduction, they're looking at a very large captive market.”

Many respondents noted that adherence to a daily protocol would be challenging for people who often have chaotic lives, and that poor adherence would increase the possibility of resistance to an important class of drugs, which an injector might eventually need for their own health.

“There are quite a lot of people who inject who are HIV-positive and who do not follow treatment; it could be a challenge to get people who are not positive on treatment like that, especially people who don't take care of their general health on a regular basis.”

One respondent who is strongly opposed at this time can see how PrEP might be useful when many other conditions are met (e.g. harm reduction to scale and universal access to ART), but most of his peers see it as a distraction from better access to harm reduction which is needed immediately. Others expressed concerns that the availability of PrEP in some countries would undermine the critical message that NSP, OSP, HTC and ART are vital harm reduction interventions, and that services themselves might be cut back or closed if PrEP were rolled out. This is a particular threat with regard to hepatitis C prevention (a far greater problem than HIV for the PWID community), as PrEP does nothing to address this; in effect, PrEP could pose a double risk, undercutting proven options and undermining hepatitis C prevention. In general, PrEP is seen as unnecessary and a poor investment when proven, low-cost harm reduction interventions are already available, and which some countries are still not providing.

“Wouldn't it make more sense to have clean injecting equipment?”

“For people who are concerned about high exposure to sexual transmission (e.g. MSM, SWs, TG), PrEP might be a good option, but for the injecting community it is more important to promote cheap and effective harm reduction, especially needle and syringe programmes. The priority should be availability of clean needles.”

It's a very expensive way to reduce the risk of HIV transmission, when we know that NSP and handing out harm reduction supplies is such an effective way to reduce HIV, and a lot cheaper. I would rather see a focus on the 15 million people who can't get access to ARVs, rather than trying to get injecting drug users on PrEP.”

“It might be a good thing, but it's not necessary. The priority is to work on harm reduction [referring to the current comprehensive package].”

Post-exposure prophylaxis (PEP)

Most respondents believe that PEP is an important intervention that PWID have a right to know about and to access, but that the community is generally not aware of PEP as an option. Some people feel that the availability of clean needles helps to remove a need for PEP among PWID (as long as they engage in protected sex), and for most people this would be preferable to seeking PEP in a public health facility. In some settings PWID would be reluctant to ask for PEP due to laws that would require providers to report drug users seeking services to the authorities; fear of prosecution would be more compelling than fear of HIV for most people in those settings.

“We need to start by decriminalizing drug users, then spread awareness about interventions like PEP.”

Two service providers felt that in some countries PWID would be unlikely to be given PEP due to stigma and marginalization of drug users as well as the cost of the drugs.

“PEP should be available to drug users but it's not. Drug users are considered as taking a known risk and so perhaps don't ‘deserve’ to get it.”

Furthermore, in many settings where active injecting drug users can't go to health care facilities to ask for ART if they are HIV-positive, they are even less likely to be able to go to an ER and ask for PEP because they used a possibly contaminated syringe; stigma is a powerful deterrent to seeking services, as is the fear of having one's drug-using history become part of a permanent electronic health record.

“It should be available for all. But [in Tanzania] they don't have access to clean syringes, so 100% have been exposed. So all PWID should get it, but we can't even get them to clinics in the first place—it's about stigma, it's about money, it's about lack of trust, so it's difficult to imagine PEP as an option [in this setting].”

“There is a value judgment element. There's more empathy toward a person who has been raped or a service provider [who has had a needle stick injury] than there is for a person who injects drugs, and this is excluding community members from a vital intervention.”

“When a person who injects drugs asks for PEP, it is because s/he is very sure that s/he's been exposed to HIV by a needle. When someone is that sure that they've been exposed, they should absolutely be given PEP regardless of the reason for the exposure.”

Several respondents, PWID community members and experts, two of whom had personal experience with PEP, felt that this was a good intervention as long as the individual had an understanding about the process and some level of stability in terms of housing and a support network to help the person cope with the process and the side effects. Some providers might be reluctant to provide PEP for young injectors because of consent issues.

One participant, a member of the PWID community as well as a technical expert, shares a more nuanced view of PEP for PWID: investment in PEP would be a diversion from the real issue. His position is that people who inject drugs should not be in a situation where they need to re-use needles. While unprotected sex might be more pleasurable than protected sex, and some people might choose to take that risk, there is nothing pleasurable about sharing needles, and it is not a choice that people would make voluntarily. He feels that UN guidance on targets for harm reduction is part of the problem; e.g. 200 syringes/year is not an adequate supply for a daily user, and the recommendation should be as many needles and syringes as any individual needs.

“We don't expect people to re-use condoms, we shouldn't be expecting people to re-use syringes. And that is effectively what we're being expected to do. Harm reduction programming is nowhere near the scale at which it needs to be, and that, for me, is a greater imperative than PEP. If we're choosing where to put resources, we should be putting them into pro-preventive measures. ”

When asked about limiting an individual to a certain number of courses over a period of 12 months, 2 service providers felt that there should be no limits, but that prescribing PEP required considerable counselling, support and follow-up, along with information for more effective prevention strategies.

Early initiation of ART

Early initiation is viewed favourably by 14 of the 19 people who responded to the question, but 7 respondents felt that is was not at all feasible in their settings due to criminalization, stigma, and general lack of ART for PLHIV who are currently eligible. Most of those in support of early initiation would be opposed if this were a mandatory measure imposed on the HIV-positive injectors.

One expert expressed concern that the way that some ART recommendations are worded facilitates imposition of treatment without the real consent of the patient.

“Even when the recommendation says that ART should be offered, in some countries, saying ‘no’ to a physician is not really an option, so those patients are effectively being forced into treatment. And you can be blamed and marginalized further if you refuse this treatment.”

Another member of the community and a technical expert pointed out the view that there is an important omission in the Consolidated ARV guidelines in that early treatment is not recommended for people with hepatitis C, as it is for people with hepatitis B; several respondents assert that hepatitis C is actually a much larger concern to PWID than HIV.

A more widely held view among respondents is that the health of the individual must be the first concern, and that early treatment must be an individual choice. Most respondents rejected the notion of the public health benefit as more important than the individual's wellbeing.

“There is a concern that in some countries this will be used to identify possible ‘vectors’ of transmission, especially among key populations and to force them into treatment to prevent transmission to others.”

“This notion that a given population is disproportionately contributing to transmission is stigmatizing; it's about others being more comfortable with the idea of starting around CD4 500, not the individual.”

However, in many places, there is a more urgent need for other support services for HIV-positive PWID, better treatment literacy, and universal access to HIV treatment for those who are eligible before early initiation of ART is a viable or acceptable option.

“Service delivery would be problematic, there are already long lines and overcrowded clinics. There would have to be more clinics just to serve the current population [who are eligible for ART].”

“Most people are just not ready to make a decision about treatment at that point, there are so many implications to consider (including that you have to take charge, carry the meds with you everywhere and deal with those issues as well) and so many other things to deal with.”

“Pills make you feel sick. If you are feeling well and you are not convinced you need this, adherence will be difficult.”

One member of the community who is also a service provider felt that in EECA countries, especially in Russia, doctors would never offer drug injectors early initiation on ART because of the low value placed on their lives.

“PWID are pretty much outside of society in Russia, and nobody in the MoH will ever think that drug users have families and friends, they simply can't conceive of this. They think that PWID are people who live on the street, have no friends or family, and of course they can infect only each other, which [in the view of the MoH] is good.”

A similar view is held by a respondent in Asia who first noted that he liked the new ARV guidelines on treatment initiation, because he thinks starting earlier is good for all PLHIV. However he sees other, more fundamental issues as needing more urgent attention.

“CD4 count is not the issue for PWID. Just to get them to the ART center is difficult, they are dirty and public transport doesn't even want to take them. There are no mobile services, and ART is only available through the government hospital, it is very unrealistic to [think about getting] PWID on ART early. People do not care about them, and they need so many other things: food, clean water, they sleep in the streets, they have nothing. So ARVs are not really important.”

Another member of the community and a service provider in a country where HIV transmission is illegal notes that early initiation can be an excellent strategy for PLHIV to achieve viral suppression and avoid criminal prosecution, especially when there are aggressive efforts to find and arrest people who are suspected of ‘criminal’ behaviour.

“Protection from prosecution is a huge individual benefit; there have been witch hunts of people who are [suspected of being] HIV-positive. “

A member of the PWID community in a setting where very few eligible people have access to ART notes that many service providers are not even aware of the new guidance on ARVs (recommending initiation at a higher CD4 level). He feels that early initiation might be a good idea in theory but a long way from reality in his setting where most PWID are reluctant to get an HIV test.

Round 1 Delphi

WHO Regional offices were informed of the Delphi consultation and asked to provide contacts to key regional experts in transgender health and HIV to be included in the Delphi exercise. Using these contacts, together with well-known experts from academia and international organizations, a total of 44 individuals were invited via e-mail to participate in the Delphi exercise. A week following the initial invitation, the link to the Round 1, 27-item survey questionnaire (see Annex 1) was sent out and the survey was kept open for one week, with one reminder e-mail sent out one day prior to survey closure. Round 1 was completed by 24 experts (a 54.4% response rate). Respondents were anonymous to one another, and only the research team was able to access details of those participating. Responses to each question were summarized using descriptive statistics.

Round 2 Delphi

Based on Round 1 analysis, the Round 2 survey was developed, including a summary of all items on which there was consensus (which was predetermined as being 51% agreement by respondents on any given question (13)). All items with less than 51% agreement, as well as any novel topics raised in Round 1, were included in this second questionnaire for the purpose of ranking.

The 24 experts who had participated in Round 1 were sent an e-mail summary of Round 1 results and the link to access the Round 2 survey. The survey link was kept active for one week, with one reminder e-mail sent one day before closure. Eighteen experts participated in Round 2 (a 75% response rate among those who had participated in Round 1). Following analysis, participants were again informed of the results of Round 2.

Supportive factors and enablers

Nearly all individuals interviewed reported friends and the transgender community as the prime source of HIV and other health-related information, peer support and a strong sense of community. Exchange of information occurred both through face-to-face and virtual connections with other transgender individuals. Across respondents, friends and the transgender community were portrayed as a vital source of information, support and empowerment.

“We take care of each other and that goes a huge long way towards helping ameliorate the difficulties that we're facing in trying to get information… we're not just lonely, single people out in the cold waiting for the door to open and for us to be brought in. We have amazing communities already, we take care of each other… and I would say, that's one of the best things about being trans.”

Transgender man, 31, United States

A majority of interviewees mentioned the importance of the Internet and social media in providing health-related information, included social network sites and transgender-specific blogs.

Many reported actively searching the Internet for information on hormone use, gender-affirming surgery and health-care services and service-providers, as well as to connect to peers. Using the Internet to access HIV specific information was mentioned less frequently.

“When I started my hormone therapy, I started going into Facebook groups and checking information on what they are taking … I also could find some online resources from some Canadian reports on hormone therapy and other transition methods.”

Transgender woman, 29, Brazil

“Some older transgenders shared their experience of using the hormones and other things… I read a lot of Internet because I cannot get any access from the medical practice, medical providers…”

Transgender woman, 22, Indonesia

Responses also suggested that the majority of information consulted on the Internet by transgender people largely came from the transgender community itself or was in some way endorsed by the transgender community, and hence was considered more trustworthy. Furthermore, numerous responses suggested that the high reliance on information from peers and the Internet was due to a lack of information elsewhere, such as through the medical system or research.

“If I'm on Facebook or if I'm on Tumbler and I see WHO recommending that this is a set of recommendations and this is what you should do, this is what you should not do… I won't share that, I won't tweet that. But if it's coming from someone who is prominent in his region or her region, or someone who is a known figure somewhere, who is part of the community, and then I will say, “Oh yes hey, if she is endorsing it or he is endorsing it, there must be some truth in it.”

Transgender man, 29, Singapore

All except one interviewee worked in transgender- or health-related organizations, reporting these as important sources of information on HIV and broader health issues. This is likely to have had a strong bearing on the level of information available to the transgender individuals interviewed here. Some of these individuals explicitly mentioned directly seeking out information related to HIV and transgender health from publications from government, UN agencies and academic research and then contextualizing such information to fit their local needs.

“Our main source of information is coming from the UNO, the manuals that United Nations gave us and still continues to give us.”

Transgender woman, 35, El Salvador

“In terms of latest technologies, latest medications, even interventions, things of that nature, we normally get it through our funders.”

Transgender woman, 44, United States

Challenging factors and barriers

A lack of transgender-specific information overall was perceived by the majority of transgender people interviewed as the major barrier to accessing HIV and transgender-health related information. Among individuals not self-identifying as men who have sex with men, several perceived the conflation of transgender issues with other LGB issues – and in particular with MSM issues – as frustrating. Though a less common experience, some individuals also said that the discourse on HIV in their context was predominantly targeted at heterosexuals. This was seen as preventing transgender-specific issues from being adequately addressed.

“The sad thing is that trans women are lumped within those MSM approaches, within those MSM statistics, within those MSM interventions. Transwomen are not MSM. Once you start focusing on MSM and you include transwomen, you have already missed us.”

Transgender woman, 31, South Africa

The main gaps in information identified by transgender individuals pertained to gender-affirming surgery and hormone use, including concerns about potential interactions with ARTs and HIV test results. Furthermore, a lack of transgender-specific information on HIV prevention and effective interventions was identified as a major gap.

“I did not know whether hormones have any interference with the test results and I can't find anything on that at all… it was just hard because there are times whereby my results came back inconclusive, so I get positive results, I get negative results, during my screening test… And I also don't know how effective treatment is when one is on hormones.”

Transgender man, 29, Singapore

Some participants reported that efforts were being made to target HIV messaging towards transgender populations, but they still felt frustrated by these efforts. Others raised concerns about the complete absence of transgender-specific HIV awareness information in their countries, feeling that their needs for information were not being addressed.

“Even if UN agencies – UNAIDS or UNFPA or all these UN agencies or regional agencies talking about HIV – [are] making sure that we also prioritize key populations, it's still not reflected in terms of awareness messaging and packaging. There is still no specific awareness information available, or material that's specific to our needs. So I don't think that it's fully addressed… They can have their conversation in their offices, but its not reflected in the information that is going around in the community. There are no television, newspaper or printed materials on the specific needs of transwomen and transmen and how they can protect themselves from HIV. It's still the old same heterosexual packaging.”

Transgender woman, 28, Fiji

The uncertain reliability and trustworthiness of available information on transitioning, particularly on the Internet, was described as a frustration and concern by several individuals.

“It is very frustrating, the information is out there but you don't know which one you can trust… Using social media, I think it's a good platform but we need to know how to really seek out this information and whether it is true or it is not.”

Transgender man, 29, Singapore

A few participants said that language barriers to transgender-specific information available on the Internet present a challenge to illiterate or non-English speaking transgender people. Limited access to the Internet was also a barrier to accessing relevant information for some.

“I haven't found any website or information written in Thai about hormones for transgender. I found some article in English. But it's lucky for me that I can read, I can write English. But for the [other] people, especially for the transgender in Thailand, it's just very difficult for them… to understand the scientific term, the vocabulary and the term they use.”

Transgender woman, 29, Thailand

Suggested strategies for improving access to HIV information

Many transgender individuals suggested that addressing transgender health needs separately from the needs of LGB populations was an important step towards providing access to HIV and other health information for transgender people. Two participants suggested that information on HIV and health should be made specific to transgender women and transgender men, to ensure that their specific needs are met. Furthermore, some participants urged that transgender-specific health information be accessible to illiterate, non-English speaking and non-Internet using transgender people, by making it available in local languages and in nonverbal forms, such as by using the creative arts.

“And one other thing that needs to be highlighted is that transgender people are transgender men and transgender women. When we work on key affected populations we call them MSM, we call them women and girls, but then when it comes to transgender, it's “transgender”. But there are actually two genders in transgender: there are men, there are women.”

Transgender man, 29, Singapore

Challenging factors and barriers

Among those who had been tested for HIV, a majority perceived the hetero-normative and non-transgender sensitive testing environment to be a major problem. Respondents commonly felt stigmatized, discriminated against, unwelcome and misunderstood, making it difficult to raise their concerns. Subsequently, some respondents strictly avoided such testing environments.

“The problem is that if you get tested… the people who provide testing think very much hetero-normative, heterosexually… which makes it very hard for a trans person to sort of raise your issues to them. So it's not a sort of a place where I would go unless it's absolutely, absolutely necessary, and I can imagine – and I know this from being in the community – that a lot of people refuse to go for that reason.”

Transgender woman, 30, South Africa

Some transgender people reported being perceived as cis-gendered people when they went for HTC. Thus they perceived the risk assessment to be of little help, or even annoying.

“The testing itself was very [hetero-]normative, because the person who tested me first of all read me as a cis-gender woman and the questions that he asked in the risk assessment was the questions that would be applicable for a cis-gender woman with a vagina… the risk analysis was not proper and it was based on an assumption and on some misconceptions.”

Transgender woman, 31, South Africa

Overall, a low level of trust in service providers at testing centres was expressed. Many transgender individuals felt they had to educate the health-care staff to be more knowledgeable on transgender-related HIV issues and more sensitive towards transgender clients. This was described as an “overwhelming explanation” and an uncomfortable experience overall. A few interviewees also reported experiencing similar barriers at settings which they felt should have been less hetero-normative, such as at LGBT clinics and international conferences.

“I don't want to have to go to test somewhere every time where I feel I have to educate the nurse on my risk and my risk behaviour.”

Transgender woman, 31, South Africa

“…if you are working in an LGBT clinic you have a responsibility to recognize that there are trans people there, we are not the hugest population, but we're there and we might not look like what you think… and it's not my responsibility to do your job for you.”

Transgender man, 31, United States

Some individuals also felt reluctant to getting tested because of their fear of testing positive. They described feeling nervous, scared or emotional prior to taking their test and “not ready to deal with whatever is going to be said”, describing HIV as a “scary disease”. Aside from these fears, reactions from society and the possibility of not being allowed gender-reassignment surgery were perceived as risks associated with a positive HIV test.

“It takes a lot psychologically to get up in the morning, to sit in those long lines, to test… When I went for testing the other day … I went into the counselling room, I was counselled, I left without testing because I wasn't sure whether I am ready to deal with whatever is going to be said there.”

Transgender woman, 31, South Africa

“How do you live and how do you deal with the reaction from the society when you got the result, especially when it is positive? People are afraid to get an HIV test … they have no idea what to do if they have the positive result… Some people believe that if you have HIV, it means you're going to die soon… And yes, when it comes to the workplace… people living with HIV are not accepted.”

Transgender woman, 29, Thailand

Some participants voiced concerns over the confidentiality of getting an HIV test. A few participants also identified the long distance to a testing facility, long waiting time at the facility, and the direct and indirect costs associated with HIV testing as further barriers to getting tested.

“Transgender women, for example if they live in a specific zone where they have health care there, they don't go to that clinic, but they go very far away from their home to take the test … because for example there are neighbours or friends or somebody who knows them and who might make public their result.”

Transgender woman, 35, El Salvador

A lack of follow-up on HIV test results and referral to other services in the case of a positive test result were mentioned by a few participants as barriers to retaining transgender individuals in HIV care.

“The reason why I didn't go back for my results was that there was no follow-up… I was actually expecting them to follow up on all of the people that were testing. But no one called me for my results.”

Transgender woman, 28, Fiji

Two participants reported never having been tested for HIV. They expressed no real need to get tested, primarily due to a low self-perceived level of HIV risk.

“It didn't come to my mind that I have to go for the HIV test or that I don't have to go. … since I am not into that much of unsafe sexual practice, I don't get tested at the moment.”

Transgender woman, 40, India

A few participants spoke about the possibility of self-testing, raising concerns about the lack of professional support and counselling in such circumstances.

“I think that is a bit of a risk because you don't know how people are going to be able to handle their status. I for example would not want to self-test. I do think there is value in a trained person like a counsellor coming to test you… Because if you self-test, you don't always know all the facts… So if I am positive and I have tested myself, who will be able to answer those questions for me?”

Transgender woman, 31, South Africa

Supportive factors and enablers

When asked what motivated individuals to seek testing for HIV, interviewees generally expressed a desire to know their own status. Having access to easy, fast and free testing which is at the same time confidential and transgender-friendly was seen as an important prerequisite for getting tested. Rapid testing was viewed as desirable, due to the fact that results could be obtained quickly. Providing testing that is explicitly targeted towards transgender people or which involves transgender peers at the testing facility also encouraged individuals to get tested.

“My guy friend told me that there is a free test and the results will come out after an hour… I really want to try it. Because it's easy, it's fast and it's free… to know your status is much better than you don't know anything about your status.”

Transgender woman, 22, Indonesia

“What motivated me to join this test was because it was targeting a specific group – it was targeting our group.”

Transgender woman, 28, Fiji

Suggested strategies for improving HIV testing and counselling

The majority of transgender individuals interviewed agreed that having access to confidential testing was essential to improve the HIV testing experience. Some additionally mentioned the necessity of having access to free testing. The view that HIV testing facilities should become transgender-inclusive, transgender-sensitive and non-judgemental was pervasive across respondents. Specifically, interviewees felt that testing services should be “welcoming”, “friendly” and offer “positive advice” to transgender clients, in order to make them feel more comfortable. Many felt that training and sensitizing staff on transgender-related health needs and risks could help achieve this and challenge the current hetero-normative approach of testing and counselling. Several individuals expressed the view that staff should be trained to offer advice – or at least be able to make a referral – on other important transgender-related health issues, such as hormone treatment, gender-affirming surgery and mental-health services.

“[HTC providers] need to make sure that there is confidentiality. There is a lot of confidentially issues… and these need to be resolved in order for people to start wanting to get tested… It's also about education: people who provide the testing should be taught about trans-specific issues in terms of HIV, they should be taught to provide transgender-friendly services.”

Transgender woman, 30, South Africa

“Because we live in a community that's so small… I would want to go to a hospital where no one would totally know me or see me entering. Most of the facilities and the locations of the clinics where testing is currently underway… are very visible to the public… So if I were to go to for testing again, it would have to be somewhere very secluded, or maybe a mobile clinic, that would come at night and do testing for key populations…”

Transgender woman, 28, Fiji

Some interviewees also suggested that offering testing through transgender-based organizations such as NGOs in the form of community drop-in centres or mobile clinics would be a successful strategy for increasing the uptake of HTC among transgender people.

“I don't really like going to hospitals and things like that. I would like to suggest that if there was something to motivate me to go for testing, it would be like a drop-in community centre for trans women that offers different kinds of services, as well as testing. That would be a really good initiative to actually get a lot of key populations to come for testing…”

Transgender woman, 28, Fiji

Prevention of sexual transmission

With the exception of prison settings, access to condoms, either commercially or through NGO programmes, was said to be easy by the large majority of interviewees. However, access to other prevention commodities such as dental dams and lubricants was described as more difficult, with supplies often unreliable.

Despite the availability of condoms, several individuals reported not using condoms with their sexual partner consistently. Some transgender individuals saw low self-esteem, societal pressures and fear of experiencing rejection from sexual partners for wanting to use a condom as barriers to practicing safe sex. The value of practising safe sex was sometimes perceived as secondary to the desire to avoid feelings of rejection and social isolation. Within sex work, clients' objection to using condoms was also described as a barrier to consistent condom use. Furthermore, one transgender man raised concerns over the marketing of prevention commodities for transgender men, suggesting that current marketing did not specifically address them.

“The fact that someone wants to have sex with us would mean that he doesn't mind my genitals, he doesn't mind my body, he doesn't mind anything about me – and do I [therefore] have the right to ask for safer sex? I mean, I might just turn him away and he would just brush me off like every other rejection that I have gotten like that living as a [transgender] person… It's more about wanting a kind of belonging and not wanting to be rejected again. Especially in that moment of passion, you really hate to be rejected. And once [sex without a condom] happens, it's something that keeps happening. You just keep thinking that this is normal, it's safe, you have not gotten [HIV] and it's safe to continue like that, because this must be the way to go to not get rejected.”

Transgender man, 29, Singapore

“There is a lot of information out there about how gay men have sex. And a lot of that I think makes it difficult for trans men, particularly those who are just newly transitioning and newly wondering about… what kind of sex they need to have, how much agency they have to control the circumstances under which it happens, and as a result what kinds of situations they put themselves in with regard to HIV or other kinds of STIs… You just pile onto all of this the hard time growing up, the hard time getting into relationships, the hard time transitioning, the hard time trying to feel like you are a normal functioning member of whatever social group you are in. If that were easier, then maybe we would have a little bit more energy for things like taking care of ourselves… And that all factors into… the decisions I was making around [questions like,] Is my life really worth it or do I want more to try to belong just for this little moment and forget about the consequences?”

Transgender man, 31, United States

A few interviewees cautioned that circumcision for prevention of sexual transmission was a potentially challenging HIV prevention strategy with regards to transgender women. Circumcision of transgender women was seen as a violation of bodily autonomy and female gender identity and one interviewee explicitly advised against inclusion of transgender women in circumcision practice.

“Many trans women feel that that circumcision is a violation of their gender identity because the circumcision itself goes beyond the snipping of the foreskin… it means society then sees them as men, which is the very notion that trans women reject. And our government is also encouraging medical male circumcision as an HIV prevention strategy. That is problematic because it looks at it from a “one size fits all” kind of approach.”

Transgender woman, 31, South Africa

Prevention of transmission through injections

Most of the transgender individuals were uncertain of the prevalence and frequency of hormone injections within their respective transgender communities. Nonetheless, the large majority of interviewees did not personally perceive the use of hormone injections as a major HIV related concern.

The reported mode of administering hormone injections varied by setting, with some participants reporting self-administration of hormones to be a common practice, while others said that hormone injections were administered by health-care staff and were thus perceived as safe. Yet in other settings, only oral hormone use was reported.

“Some girls who are travelling for leisure or business will buy a horde of injectable hormones from Thailand, for example, and they would bring it over to the Philippines and then they would have an injection party… and the nurse will inject them. So it's… a very clean procedure and its quite safe.”

Transgender woman, 36, Philippines

Some interviewees saw injections of soft tissue fillers such as silicone as a noteworthy problem within the transgender community. Mostly, silicone use was said to occur within lower-income groups and within transgender individuals working in the sex industry. One transgender woman reported that she had experienced numerous health problems as a consequence of receiving these injections. Most other participants were concerned by and hence avoided silicone injections, yet acknowledged that the comparatively low price of illegal injections was an incentive to use them. One participant further mentioned the injection of recreational drugs, in an attempt to cope with depression and social discrimination, as an additional HIV related risk factor within the transgender community.

“Beauty salons… provide silicone injection for their nose, their breasts, their hips…Those who [perform the injections] are not professional nurses or doctors. They just get it from the black market … Especially [those transgender people] who have occupation as prostitutes, they use that to enhance their beauty, their sex appeal… Illegal injections using silicone oil are quite prevalent here… because of the general poverty of trans people in my country, because they cannot afford gender-affirming surgery in either public or private [sectors], they… opt to get illegal injections from quacks.”

Transgender woman, 22, Indonesia

Access to clean needles was generally said to be easy. Most transgender individuals mentioned being able to buy clean needles through a local pharmacy. None of the interviewees mentioned needle exchange programmes serving transgender people. A few participants recognized the cost of buying clean needles as a barrier to their use.

“I think in some ways part of the problem is that they [the state government] don't think about our community a lot. Needles for the most part are for people who inject drugs… there is probably one place that does provide thicker-gauge needles that are hormone needles here… Our community not only injects hormones but they also inject other physical enhancers.”

Transgender woman, 44, United States

Antiretrovirals for prevention: PEP and PrEP

Overall knowledge on PrEP and PEP was low, with less than half of those interviewed having heard of either. Most knowledge on the subject appeared to come from professional contexts, i.e. among respondents working in health care or HIV related areas. There was general consensus that knowledge on PrEP and PEP was very scarce within the transgender community at large. Information on PrEP appeared to be even less available than information on PEP, with the latter being mostly spread through sex worker networks.

One transgender woman mentioned that information on PrEP and PEP sometimes became available in the community through research studies, and criticized the fact that such studies generally targeted men who have sex with men and were thus not widely accepted within the transgender women community.

“Unfortunately, in our community there is not a lot of knowledge about PrEP or PEP… There have been studies that have targeted MSM and they still include us in that and obviously we don't consider ourselves men, so because of that, people obviously don't participate… there has not been something that is specifically targeted to us, in regards to PEP and PrEP. And I guess once they do that, it's going to be something specific and obviously I am thinking the community is going to be welcoming… Even if at least they hire a trans person to recruit other trans women that would definitely make a difference, because in some ways you can convince people to participate.”

Transgender woman, 44, United States

Apart from the general lack of information on PEP and PrEP in the transgender community, the high cost of these treatments, lack of access through the health system, potential side-effects, interactions with hormone treatments and a general aversion to taking yet another chronic medication (in the case of PrEP) were raised as further barriers to access. A few participants said that they did not consider PrEP or PEP to be relevant prevention options for themselves, explaining that they exclusively practised safe, low-risk sex and thus did not see the need for such treatments.

“Especially the trans sex workers, they know that if they have been raped, they need to access PEP, but for many reasons, some of them do not access PEP, because of issues within the health system. There are issues of discrimination and issues of prejudice… because if you are transgender, you often get denied this treatment.”

Transgender woman, 30, South Africa

“I would want a nurse to ask me if I go for PEP for example whether I am on any other medication, whether I am on hormones, because we don't know whether those hormone drugs might interact with post-exposure prophylaxis. So that is certainly a consideration for me and something that I think about very often.”

Transgender woman, 31, South Africa

Opinions and feelings on whether PEP and PrEP should be promoted among the transgender community were mixed. In general feelings towards PEP were more positive, while some expressed reservations about promoting PrEP. However, most participants said they had no or very little knowledge on the use of PrEP and PEP and thus few felt certain about whether they would make use of these treatments or about the acceptability of such strategies within their transgender communities.

“PrEP and PEP, especially for those gay trans men who are in a serodiscordant relationship, I think this information should be made available; at least we know that there are other preventive choices when it comes to sex, it's not just about condoms.”

Transgender man, 29, Singapore

“Yes, it [PEP] is wonderful. It should be written everywhere that it exists.”

Transgender woman, 60, France

“For me personally it's appropriate to focus on using condoms… How do we create circumstance in people's lives where they feel like they don't need to be in dangerous situations around sex? And if people are totally fine, they have good jobs, they feel like they have everything that they need and [then] they still have the kind of sex where they feel like they would want to be on PrEP: great.”

Transgender man, 31, United States

Challenging factors and barriers

Three of the 14 interviewees reported that they were living with HIV and taking ART. One HIV positive transgender woman described an instance of discrimination from her doctor, where she had been refused treatment. Another transgender woman described the side-effects of her ART as a major challenge to her gender expression. Having herself been incarcerated in the past, she emphasized that the HIV related needs of transgender women in prisons were not being met, including access to ART and prevention commodities. A third transgender woman raised some of the challenges faced by other transgender women in her community in accessing treatment, explaining that stigma and discrimination in health-care settings and low levels of knowledge around ART within the transgender community commonly prevent transgender women from accessing treatment after testing HIV positive.

Among the majority of interviewees who were HIV negative, several people raised concerns around the possible interactions between ART and hormone therapy and the effectiveness of both treatments if taken together. One individual explicitly questioned whether he would be willing to go on ART, given his uncertainties around possible interactions. Many transgender individuals perceived the lack of guidance from the health-care profession on ART for individuals on hormones as a major challenge. A general sense of anxiety and concern was evident in participants' discussions around ART.

“I don't know how effective treatment is when one is on hormones… I do think that this information is necessary, because in the event that I found that I am positive, [the] next question I ask myself is do I want to spend another sum of money being on another medication for the rest of my life, just like the hormones? So unless it's proven, I don't see the importance or the urgency for me to go on ART.”

Transgender man, 29, Singapore

“I think when we talk about HIV, it should take into account what are the medications that we are on; what are the possible risks, what are the possible interactions when somebody goes onto ARV treatment as a trans person. The medical practitioners should be able to sit down with them and tell them: Seeing as you are on hormones, and now you are going onto ARVs, these are the risks, these are the considerations. That should be discussed. Definitely it's about a comprehensive package of health.”

Transgender woman, 31, South Africa

Supportive factors and enablers

Those individuals who were taking ART were asked to discuss factors which they believed supported adherence to ART. Being empowered and educated around ART and feeling comfortable to discuss potential concerns with a health-care professional were seen as important factors for enabling transgender people's adherence to ART.

“I think for trans women who are HIV positive and have been conscientious about their health, who have been empowered… who are accessing medical services and who have a doctor and who are taking medication, they continue to do that because they are empowered like that… I think once a trans woman is able to get comfortable with a doctor and is comfortable enough to listen to the doctor and to take their medications regularly, then they continue to go to the doctor regularly.”

Transgender woman, 44, United States

Attitudes towards hormone therapy

Many interviewees described their prevailing and distressing experiences of gender dysphoria. For the large majority, this resulted in an intrinsic and urgent desire to start transition. In most cases, transition started with hormone treatment. Many respondents felt that transitioning was an essential step for reducing feelings of gender dysphoria and depression, enabling integration into society, feeling complete and comfortable in one's body and allowing one to “get on with life”.

“It was like [I was] a shadow of myself… it just felt like sand in my fingers, I couldn't hold on to who I was supposed to be and why I was there and how I was supposed to be presenting myself… Every day as I walked down the hallway, towards the woman's bathroom, staring at myself in this mirror, being like, “Who is that?” And that was probably the tipping point actually, weirdly; after all of the suicidal thought and all of the stupid things that I had gone through in terms of interactions with people… it was really that literally not recognizing who that was in the mirror walking down the corridor every day. And I decided that I had three options, really: I could kill myself, which was an option. I could go back to [my home country] and try to figure out how to transition there… Or I could transition [here]. And I discounted the first two options and went with the third.”

Transgender man, 31, United States

“I think if I had the opportunity to take hormone treatment, maybe my breasts and my body will be different and make me feel more comfortable with my gender identity and the way that I look… I get depression sometimes and I feel really sad sometimes… because [the way that] people see you is the way that they treat you. So I feel very, very uncomfortable right now that I don't have the opportunity to have support or some doctor to help me with… my hormone treatment to make my body look like my gender identity. There are some times that I look in the mirror and I think that I want to kill myself. That's what I feel.”

Transgender woman, 36, El Salvador

“The hormones change a lot, my skin got smoother, and the shape of my face nowadays is completely changed. I have a small breast… the skin changed, the figure turn to be more feminine. Step by step… I feel good, because I wanted to be a woman.”

Transgender woman, 29, Thailand

Challenging factors and barriers

The large majority of transgender individuals interviewed described access to hormones as one of the biggest health struggles they faced in everyday life. Across interviewees, a lack of information and guidance on hormone treatment from the health-care system and from medical practitioners was identified as the primary barrier. Interviewees often described high costs, complicated and lengthy processes and intrusive questioning as barriers to accessing hormones through the health-care system. Some individuals reported a complete lack of access to hormones through the health-care system.

“There is a dearth of doctors and experts on trans health care… It's quite hard to find trans friendly medical practitioners who would actually listen to you and take care of your health needs… It's also trial and error because as an endocrinologist, they really did not study hormone replacement therapy when they were in medical school, so it's an experimental phase for them to see what works and what doesn't work. And of course it's patients who will have to bear with this experimental phase.”

Transgender woman, 36, Philippines

Stigma and discrimination by health professionals was a common experience encountered by the survey participants when accessing hormones through the health-care system. For example, several individuals described instances of medical practitioners trying to “convert” them back, i.e. to make them change their mind about transitioning, or outright refusing to administer hormone treatment.

“I was supervised by a psychiatrist who was trying to change my mind… My doctor believed she can help me reconcile myself with my birth sex. So it was very difficult to speed up the process, because I was asking for hormones and she was telling me let's wait.”

Transgender man, 31, Russian Federation

As a consequence of the numerous challenges associated with accessing hormones through the public health system, most interviewees engaged in self-medicated hormone use, as this was perceived to be easier than trying to access hormones through the health-care system. The majority of these individuals reported taking oral contraceptive pills obtained at the local pharmacy. A few individuals reported using injecting hormones, which they obtained from overseas, through friends or through the Internet.

“I cannot get any access from the medical practice, medical providers, so I just read [about] it in the Internet… Most [transgender people] are doing self-medication too. It's really rare to find transwomen who [deal] with the doctor for hormone replacement therapy. It's expensive and the doctor also has stigma and discrimination.”

Transgender woman, 22, Indonesia

Concerns relating to possibly harmful side-effects of prolonged hormone use were expressed by a large majority of individuals.

“Unfortunately from what I read so far there might be some side-effects that are not symptomatic, so I am concerned that… the hormones I am taking to have the desired hormone levels are also damaging my liver.”

Transgender woman, 29, Brazil

One HIV positive transgender woman explained having stopped hormone use because she lacked medical supervision and feared health complications induced by the hormone treatment.

Several interviewees raised concerns around the availability of hormones acquired both through the informal market and through the public health system. Some participants additionally expressed worry over the quality of illicit hormones and the high cost associated with self-financing access to high-quality hormones.

“I get my hormone treatment from a local clinic… where there is no streamlined service package for trans folks…I personally have had to be very strategic, and I formed a patient-provider relationship with one of the nurses who understands the issue, but if I get there and she is on leave, then I'm really in [difficulty]… Also there are a lot of stock-outs… It really is affecting me greatly, because if there are no hormones, it means also the hormone structure in my body is affected… it is affecting the way that I present in society, because if I go off my hormones, sometimes the hormone imbalance affects my mood, it aggravates the depression. It also relates to how confident I am, because the hormones help me in my female presentation. So if I don't have access to those hormones, it really sets me back in terms of my transition.”

Transgender woman, 31, South Africa

Supportive factors and enablers

Throughout many of the interviews, a strong sense of individual and collective agency in coping with the lack of professional guidance and provision of hormones by the health system was evident. Most individuals self-medicated their hormone use, as a strategy to overcome the stigmatization and numerous barriers associated with the public health-care system. Self-medicated hormone use was seen by many as enabling “more control” over transitioning, by reducing outside determination and influence on transitioning goals. Being able to purchase hormones over the counter or through the pharmacy without prescription was welcomed by transgender women in several countries. Overall, a strong sense of community, peer support and sharing of knowledge and experiences with regards to hormone treatment were described as important supportive factors by those taking hormones.

“ A group of us just decided … we should just start experimenting on one another… The first time was really quite exciting and we all learned something together… We can control the amount of dose we want to take and we know what I'll be taking, at least. For a lot of us it's a lot of experimenting [with] the different dosage of testosterone and seeing what it can do to us… This is something the doctor here would not be able to do; you can't request for a large amount of hormones; they would not recommend that and they would not do it. So if you are doing it yourself, you can try and see what works best for you.”

Transgender man, 27, Singapore

Suggested strategies for improving hormone treatment

When asked what would improve access to hormone treatment, there was a general consensus that health professionals need to be trained to deal competently with gender transition issues, or at a minimum be able to make referrals to existing services. Some individuals also felt that doctors should be able to provide recommendations on self-administered hormone use, in order to make this common practice safer.

“We need to educate the health-care professionals so that they understand how to distribute hormones, but also understand that they can do it. Because a lot of doctors don't really know that they are allowed to do it. So they just need to be told you can do this and this is how you do it. It's just very simple. And then every primary health care facility should be able to distribute hormones, because they are on the essential medicines list.”

Transgender woman, 30, South Africa

A few individuals in countries where hormones were available through the public health-care system indicated that reducing the number of gatekeepers and lengthy psychological assessments required prior to starting hormone treatment would help to significantly ease hormone access.

“Hormone treatment in South Africa is available, but it's also very challenging, because you have to work through the psychologist and the social workers… Otherwise, it's not really available to trans people, you can't walk in and say I want to have hormones, without having had the necessary counselling or without a prescription. The doctors won't write that prescription for you if you have not been to the counselling and well-being component of the transitioning process… The waiting in queues for services in local clinics is very challenging if you are also holding down a job.”

Transgender woman, 31, South Africa

Challenging factors and barriers

Nearly all individuals interviewed reported major difficulties in accessing gender-affirming surgery through the public health system. The few individuals who had access to gender-affirming surgery through their public-health care system felt deterred by long waiting lists, arbitrary and lengthy gatekeeping mechanisms and the pathologizing nature of accessing such treatments through the public system.

“A lot of trans women will always tell you that they feel as if they are born in the wrong body and it's a really, really overwhelming experience to go through life with a body when you don't feel comfortable enough to shower in front of other people, to dress in front of other people and to have sex with whom you want to have sex with… So it's a really, really difficult space to be and it affects one personally. My wait on this waiting list [for gender-affirming surgery], I won't say that my depression is because of this, but it has definitely added to the depression from which I suffer… I know some of the white trans women who have sold their houses, or have sold their car and they went to Bangkok and had the surgery… I don't have that luxury… I have been on the waiting list at one of those [centres] for the last 14 years.”

Transgender woman, 31, South Africa

“The thing about the public health-care system is that it's still pathologizing and they have a mandatory two-year psychological treatment that's required. There is a big waiting line to get surgery. I have met people who have been waiting for 5 to 10 years… so it's quite frustrating… It's very unlikely you are going to get something if you don't have a diagnosis for transsexualism or gender identity disorder.”

Transgender woman, 29, Brazil

Two interviewees reported an inability to access gender-affirming surgery in their country due to a complete lack of such services through the public health system.

Due to the numerous challenges associated with accessing gender-affirming surgery through the public health system, those wishing to undergo surgical transition often sought out private options for getting surgery. Among these individuals, the high costs of privately financing gender-affirming surgery were identified as a major barrier.

Many respondents had little trust in the technical ability of medical professionals and the quality of gender-affirming surgery, for both publicly and privately financed surgery. Concerns over post-surgery complications and associated financial hardships deterred several individuals from undergoing gender-affirming surgery. One participant raised concerns over the potential increased sexual risk of acquiring HIV associated with having a neo-vagina. Another participant suggested that some transgender women undergo non-medically licensed and often dangerous surgical procedures due the high costs of high-quality surgery.

“Something that I have been thinking about recently is that there is not a lot of literature that speaks to the vulnerabilities of bodies to HIV post-transition. What are the risks of having sex with this surgically created vagina? Is it the same as the anal risk; is it the same as the vaginal risk in CIS-gendered women?”

Transgender woman, 31, South Africa

Supportive factors and enablers

Some of transgender individuals interviewed strongly expressed that transition surgery was a vital pre-requisite to “get on with life” and achieve psychological wellbeing.

“[Having breast removal surgery] was amazing. That was probably the biggest barrier that I had [experienced to my sense of self]. Going back to the idea of recognizing myself in the mirror: You can look all kinds of ways [with regard to] your face, but [once you no longer] have breasts, you are a dude. Period, end of report.”

Transgender man, 31, United States

“I had to take on a loan to get my surgery, because I just wanted to get it over and done with so I can quickly get on with my life. Because it was just not possible for me to get out and get a job with the kind of body that I had and I just wasn't comfortable at all.”

Transgender man, 29, Singapore

The strong desire to undergo transition appeared to drive many transgender individuals to find ways to overcome the numerous barriers to surgery. As with hormone treatment, several individual successfully found strategies, including actively seeking the necessary information, making connections through transgender networks and peers and/or travelling overseas to undergo surgery.

Having the financial resources to pay out of pocket for surgery appeared to be the single most important factor to enable transgender individuals to have gender-affirming surgery. This financial ability enabled several individuals to access private health care in their country or to travel abroad (commonly to Thailand) to access higher-quality surgery.

“Actually, there are many clinics or hospitals where you can get the plastic surgery or the SRS [sex reassignment surgery] in Thailand. Many of them are of a high standard… There are different levels of price that you can choose and for myself my financial status at that time was quite ok. So I think I had more choice than other people who are struggling with their financial status. Most of the information is available on the Internet: the name of the hospital, of the clinic, the details of the doctor – where they graduated or the field in which they are expert.”

Transgender woman, 29, Thailand

Having strong connections to transgender peers and thus benefiting from shared knowledge, experiences and recommendations regarding surgery also appeared to be a valuable strategy to help overcome barriers to surgery. A supportive and transgender-friendly clinical environment was highly valued by those individuals who had undergone surgery and led to such places being recommended further within the transgender community.

“The problem that we have to face again is that there is no licence… So it means that if you want to have surgery, you need to choose a doctor yourself. And you need to [find out] how good the doctor is also yourself. Normally we do it through the patients, some trans people network. So we just ask each other about results of surgeries and surgeons and ask them about results of surgeries.”

Transgender man, 31, Russian Federation

“…I got some contacts and then they started connecting me with some other people who are like me and then we started talking and then we went for the surgery in the same hospital together [in Thailand]… It was very nice because we were able to walk out of our rooms and just talk to one another… So that's where I got more information on surgery, on hormones or how to actually take care of the scars… It was very welcoming, I would say. And it's really very warm, which is something that we won't be able to experience in normal health-care settings here.”

Transgender man, 29, Singapore

Suggested strategies

Being able to access gender affirming-surgery through the public health-care system was seen by many interviewees as essential for meeting transgender people's physical and mental-health needs. Many interviewees felt that removing complex and lengthy gatekeeping mechanisms was important for improving access and reducing delays to gender-affirming surgery. The quality and professional capacity of those performing gender-affirming surgery were a common reason for concern among many of those interviewed, which suggests a need to further develop and disseminate global guidance and standards of care for gender-affirming surgery.

Further information to survey participants

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