Although HIV infection rates are high among the transgender community in Russia, many transgender people know very little about the virus, as well as their own health status. In Russia's first study to examine transgender people as an at-risk social group for HIV transmission, demographers attribute these high infection rates to the community's social stigmatization and isolation, as well as a lack of access to medical services. The study's findings have been published in the HSE journal, Demographic Review.
Invisible and Isolated
In Russia, there are more than a million known cases of HIV. Worldwide, according to UNAIDS estimates, this number is 37.9 million. The risk of HIV infection is greatest for individuals who engage in male-to-male sexual contact, use intravenous drugs, work in the sex trade, as well as those being held in the Russian penitentiary system.
Another at-risk demographic group is the transgender community. The term 'transgender' is an umbrella term that refers to people whose gender identity differs from what is usually associated with the sex that was assigned to them at birth.
The term may refer to individuals who have undergone surgery or hormone treatment to bring their bodies into alignment with their gender identity, as well as individuals who have not undergone any medical treatment. The term also includes individuals who are nonbinary, i.e., those who do not identify with either biological sex. Currently, nonbinary gender is officially recognized in only a few countries (including India, Canada, Australia, and some US states).
Transgender people are perhaps the most isolated and invisible social group. In Russia, as in most countries of the world, their official numbers are unknown, and there are no statistics. Conducting even an approximate transgender community 'census' is difficult: transgender Russians generally do not respond to survey attempts due to society's unacceptance and stigmatization of the community.
For this same reason, transgender people form one of the most vulnerable social groups: transgender citizens feel excluded from society. When transgender people transition, they often lose their jobs and are shunned by their families. They are forced to move and apply for new documents (passport, birth certificate, as well as a new social security account, insofar as the retirement age in Russia is determined by gender). Consequently, transgender people feel like outcasts. They develop problems with substance abuse and fall victim to sexual violence. Transgender people also find it difficult to find employment, which causes some of them to resort to sex work.
These conditions, on the one hand, make transgender people especially vulnerable to HIV (in Russia, the transmission of the virus through sexual contact has increased, though in many regions of the country, the main form of transmission remains intravenous drug use). On the other hand, these conditions make it difficult to estimate the number of people infected with the virus and provide treatment. 'Making contact with the transgender community from the outside is very difficult, and it is even more difficult when promoting prevention awareness,' the researchers write. Confidential conversation is possible only with a 'peer-to-peer' approach, i.e., when a transgender person can talk with a fellow member of the community.
Researchers used the 'peer-to-peer' approach in telephone interviews with a sample of transgender people. The sample consisted of 224 individuals who have undergone corrective surgery at a sex correction clinic in Moscow.
Among those surveyed, almost three quarters (72%) had transitioned from male to female (mtf), and 28% had transitioned from female to male (ftm). The average age of those surveyed was 29.3 years. The researchers measured participants' HIV awareness by using the UNAIDS questionnaire.
Indifference and Misconceptions
The survey confirmed a high HIV infection rate. Of the 224 respondents, almost half (105) reported that they are HIV-positive. The other half of respondents (112) reported that they 'were not interested in learning their status.' This, however, say the researchers, 'does not mean that these respondents are not HIV-positive.' Of the sample, seven respondents reported that they know they are HIV negative.
These figures show that transgender people are poorly informed about the Human Immunodeficiency Virus. Moreover, respondents not only showed a lack of awareness about the disease, but reported a lack of interest in knowing their own HIV status.
'A significant portion of those we surveyed do not care if they have the virus or not,' the authors note.
Respondents demonstrated a lack of awareness about how HIV is transmitted:
- 29% of respondents believe that HIV is not transmitted through shared use of syringes, needles, and rinse water.
- 13% believe that one can contract HIV by sharing baths, toilets, dishes, or towels with someone who has the virus.
- 13% believe that HIV can be transmitted through kissing.
- 17% believe that mosquitoes can become carriers of the virus and that it can be spread through mosquito bites.
- 9% feel confident that they can identify a person who is HIV positive based on their appearance.
- 9% of respondents do not distinguish between HIV and AIDS.
'If we summarize all of the incorrect answers we received to the survey's basic questions about what HIV is, then we can conclude that about half of the respondents do not know certain facts about the immunodeficiency virus and, more significantly, have misconceptions about it, which is considerably worse,' the researchers say.
Among HIV-positive respondents, 12% believe they contracted the virus sexually, and 44% cite shared syringe use. 38% believe that they contracted virus during a blood transfusion.
Respondents most likely did not always answer the question about how they contracted the disease truthfully. 'It is likely that drug use is the true source of transmission rather than a blood transfusion performed at a clinic, because if that many people contracted HIV in medical clinics, that would be a public health crisis,' the researchers note. The Russian Ministry of Health investigates every reported case of infection at a medical institution. 'We don't know of any investigations of cases that concern blood transfusions performed on transgender individuals,' the authors say.
Lack of Awareness
For the largest portion of respondents, the main source of information about the virus is the Internet: over a third of respondents (34%) cited the Web as their main source of information. Television as a source comes in second place at 29%. The press, as well as family and friends, were each cited by 14% of respondents. Other sources were named by 9% of participants. Of these other sources, school and university lectures were cited by less than 1% of respondents.
'In theory, schools and universities are places where young people (most of the respondents) should be able to receive reliable information about HIV in the first place,' the researchers suggest. 'However, young people aren't receiving it at these places.' Furthermore, the researchers says, 'there is reason to doubt the adequacy of information' from the Internet or the media, which is disseminated by sources who themselves do not have sufficient knowledge about the virus and how it is transmitted.
The researchers also asked respondents how they think the problem of low public HIV awareness should be solved. Most identified the same sources from which they themselves learned about HIV, while also emphasizing the importance of schools and universities hosting awareness events and educational lectures.
In general, respondents think it should be up to the government to raise awareness. 'The traditions of state paternalism are strong, and the first thing that many respondents say is "the government should",' the authors observe.
Risks and Consequences
Over two thirds of the HIV-positive respondents report undergoing antiretroviral therapy, while one third does not. The researchers purposely did not study the reasons behind this. However, they note, this indicates that these individuals are either 'unable or unwilling to undergo treatment.'
The study also reveals that, of those surveyed, one out of every three does not tell their partner that they have HIV.
This has serious consequences. 'If the couple is in a long-term relationship, the probability of transmission is high, and this can be considered intentionally transmitting a sexually transmitted disease,' the researchers say.
Given the isolation of the transgender community, organizations that work with the community should address these problems, the researchers say. 'For starters, efforts should be made to include transgender people in the general Russian healthcare system, so that they are not afraid to go to the doctor and seek help.' And for this, measures need to be taken to stop the stigmatization of transgender people in Russian society.