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Armen Agadzhanov: Stigma and discrimination arise when those at power do not want to take into account the vulnerable populations

May 25, 2018

The LGBT activist, strategic information officer of the ECUO Armen Agadzhanov became the first person living with HIV in Armenia who publicly disclosed his HIV status. Colleagues from Life4me prepared an interesting interview with him about the life with HIV, his work and discrimination in society.

Armen Agadzhanov Армен Агаджанов

Armen Agadzhanov

– Hello, Armen. You’ve already been interviewed many times, but let’s try to focus on more specific stories to find out how things are going in the region now. Let’s start with when you found out about your HIV status. Could you describe it briefly?

– I learned about my status in 2014, in May. It happened while I lived in Armenia. Prior to this, I got tested repeatedly, the results were negative. For half a year before I was diagnosed with HIV, I did not have any sexual contacts, especially unprotected ones. But then I underwent a surgery. Since the wound was healing very slowly after the surgery, I decided to take an HIV test again, and the result was positive.

– So, it was in 2014, that is basically not so long ago.

– Yes, not so long ago. But it seems that this had been an eternity …

– How did you react to the news about your status then?

– I was aware what is HIV, I knew that there is nothing terrible in this. At the same time, I did not know a person living with HIV, who lives with the disclosed status. When I found out my status … it was difficult, because despite the fact that there was enough information available, all that theoretical knowledge completely collapsed and faded into the background, and I found myself struggling with various stigmatizing, stereotypical thoughts, like “Damn, how will I live on? What will happen to me?”, “I’ll die,” “I’m flawed”, “If I were a good person, I would not have gotten HIV”. But I think that this period did not last very long – especially in comparison with others – in 2-3 weeks my mind seemed to settle. I felt like I have gotten over it. I felt emptiness. There was a complete re-assessment of my life. All my plans were shattered. I started to think about my life over and over again: to re-create plans, to reconsider the attitude to life, towards people, universal values.

At that time the guy with whom we have just started relations helped me a lot. I suggested that we should break up, without mentioning my status, he said “no”, and when I told him that I had HIV, he answered that it was not a problem for him. Later this attitude turned out to be a fake – he disclosed my status to many people. Later we broke up, as I now understand, not because of my status, but because he blabbed out to many people about my status.

My friends were very supportive. It was just the human support that helped. Then I disclosed my status not only to the closest people, but not to a large audience either. Then my friends tried to make me behave more reasonably about it, asked very politely to avoid doing it at least for some period. It was shocking for many people and there was a strong negative attitude towards me, the attitude changed and I myself started to feel uncomfortable about it. Nevertheless, the support that I received and now receive from friends was so much helpful. I am very grateful to them for that.

I already skipped a few of your questions, right?

– Yes, but we will go back to them. That is, as I understand, you started telling everyone about your status. And what happened then?

After an unpleasant situation with that guy, I stopped telling everyone about my status. Then I did not work as the PINK Armenia staff member yet, but I was already a volunteer there, and Mamikon (M. Hovsepyan, founder and director of PINK Armenia – ed.) did not know about my status. This was the key problem that he did not know, and I asked my friend to tell him my status. I was ashamed to tell him, exactly him, that I had HIV. Probably, for that time I was prone to self-stigmatization, I did not want him to become “frustrated” with me.

As a result, Mamikon gathered all the staff who already knew that I had HIV in the office, explained them what HIV is, how to live with it, how to deal with HIV-positive people, and said half-jokingly that disclosing someone’s status entailed a criminal punishment. The main point was that they should not talk about my status, I opened my secret to them, and this is my personal information and it should be my decision to whom to talk about it. I am very grateful to him for this meeting, I would never dare to do it myself.
After that, I refrained from telling that many people that I have HIV: first, there was no need, and secondly, I was scared, to be honest, because I noticed that some people change their attitude to me, in different ways, some start to feel pity towards me, some are more careful and begin to concern about me, but still start to supervise in a way, which is still not very pleasant.

After some time, I started to talk freely about my status, because I realized that for me this is no longer a problem, and for my social environment this should not be a problem too. And it was such a political move. Initially, I talked about my HIV status within the gay community, indicated my HIV status in my dating apps, talked about it at different meetings of the gay community. Then gradually I began to go beyond these limits. That is, earlier I used to tell that I’m gay, then I started to disclose that I’m HIV-positive in certain settings. And on a certain moment I was ready to talk about it openly. Initially, I did not do this at the request of my friends, because they observed a lot of adversity towards me when people found out that I’m a HIV-positive gay man. All the same, I was the first open HIV-positive person and one of the first open gay men. But then we came to a compromise. When I say “friends”, I mean first and foremost the former and current employees of PINK Armenia.

Armen Agadzhanov

– You mentioned PINK Armenia several times. Could you tell what is it like to be an HIV-positive gay man in Armenia?

Is it difficult? Yes, it is. We live in monoethnic, patriarchal and Christian society, where, according to recent polls, over 90% of the population are homophobic. It’s difficult to be a gay man in Armenia. Being a HIV-positive gay man is even more difficult. These people are often prone to double discrimination. However, I always emphasize that I’m a gay man living with HIV. I decided to disclose my HIV status back in 2016, but did it publicly in late 2017. Why? Because in 2016 I participated in the film Listen to me, in which the LGBT community opened their faces and came out. Knowing that in Armenia a strong stereotype that HIV is a “gay disease” is prevalent, I waited for a while to avoid nourishing this stereotype further, because it is harmful to both the gay community and people living with HIV.

If we say how an openly gay HIV-positive person lives in Armenia, I will say that overall situation is tough, but personally I can observe changes, especially within the gay and the PLWH community. These transformations are more fast-pacing in the gay community, because if gays have used a lot of stigmatizing words in conversation before, now, well, at least in my presence, they do not do that, and if someone says something stigmatizing or discriminating, I do not answer to this, but other people without HIV-positive status respond to these offensive comments.

– That is, awareness is increasing in the LGBT community?

– Yes. These are small bits, little things, but they do change attitudes. Yes, it is difficult, very difficult to find a partner in Armenia when you openly tell about your HIV status, because even when stigma is not expressed in words, it can still be manifested in behavior. I think that it takes more time. Now there are more people who disclose their status.

– We were talking about Armenia. And where do you work now?

– Now I work in the East Europe and Central Asia Union of People Living with HIV (ECUO), in the head office, with the Secretariat in Kyiv, Ukraine. This is a regional organization of networks of people living with HIV – 15 countries are united into one organization.

In Kyiv, yes. But I work for the EECA region.

– Do you consider that you have moved from Armenia to another country or you live in two countries at the same time?

– Yes, after all, I live in two countries. It’s very difficult for me to stay out of Armenia, I try to keep distance, understand when I should intervene, when I should show up, talk, but at a certain level, I can say that I live in two countries at the same time. In terms of my activism, I work more in Armenia and for Armenia. In Ukraine, I do not engage in any kind of activism, except the fact that by participating at various events I can take people out of the comfort zone. Now in Armenia, I am a board member of two organizations: one LGBT organization and one PLWH organization. These are PINK Armenia and Real World, Real People organization. At the same time, I try to advocate and work to improve the quality of life of PLWH and KAP (people living with HIV and key affected populations – ed.) throughout the region.

– And besides that, you’re a peer consultant. How did it all start?

– In 2015, I was an outreach worker, but then I did not disclose my status. AI started working as peer consultant in 2016. Initially I counseled gays, bisexuals, men who have sex with men.

– Were there interesting or unusual cases related to peer counseling?

– There was a case when I did not entirely believe a person who told that he was HIV-positive.

– Wow! Why?

– There was kinda intuitive insight. He asked questions that a person who had recently learned about their HIV status is not likely to ask. He could not properly explain what kind of testing he took, how many times he provided blood samples for analysis. At the same time, he hinted that he wanted to make a project about life with HIV. This caused some kind of mistrust. And he constantly talked about his ideas for the project. This caused both concern and mistrust. Then he got a job in the sector where it is legally forbidden to work with HIV-positive status. This kind of job entails a HIV analysis, and a positive person I simple banned from it in Armenia. I’m still not sure about his HIV status.

– A very strange case … And now you counsel people who have learned about their positive status?

– Yes, because in Armenia it is very difficult to find a peer gay consultant. Therefore, when someone seeks help from PINK Armenia, they give my contact details. A large inflow of people started in October 2017, when I provided an interview about my HIV status. Many people wrote to me then, we still communicate with many of them. There was a great inflow in early March, when I spoke at the event, and while only PINK Armenia published my appeal about HIV-positive status, a lot of people, including my friends, wrote to me that they have just learned about their HIV status.

– Can we say that there are very few peer consultants in Armenia?

– There are some peer consultants actually. There are few peer consultants among gay men. And the number of peer consultants among other groups is insufficient too.

– It turns out that they contact you often enough …

– Yes, even now.

– Do you experience certain professional burnout?

– Yes, it happens often. It happens because of anger, because you explain to a person how to take the medicine correctly, tell that they need to go to bed on time, and not stay awake until five in the morning, and they behave the way they want. And then they write to me that they feel unwell. It happens, especially when you realize that you cannot help a person …

There is a burnout due to the fact that you do not communicate with a person face-to-face. I come home after the main job and instead of having a rest, I start responding to messages.

– How do you deal with this? How do you rest?
– You should turn off the phone and go out. I do not turn off the phone, but I go to hang out. I meet with friends, listen to the music, I go to bars, go for walks, get acquainted with other people … Just like others do. Now I work 24/7, as before, but is smaller volumes. Periodically I arrange a time-off, especially at night. There are almost no night calls.

– I would like to ask about discrimination in society. Where did you experience it more?

– I’m going to say a ridiculous thing, but I did not feel very strong, direct discrimination towards myself in Armenia. There were some, so to speak, outbreaks of discrimination, but they were not very intense and not aggressive, not directly targeting me. There was no physical violence. However, I pretty often face adverse attitude online. I experience HIV-related discrimination almost every day, to the contrary. Initially it happened within the gay community. Since that time and till now it continues in medical institutions. In particular, no matter how ridiculous this may sound, I felt the most severe discrimination in the AIDS center. It was the doctor working in the AIDS Center. The epidemiological diseases doctor says “your girlfriend”, I say “my boyfriend”, he gives me a surprised glance. The doctors not always told something openly, but … their faces changed. This happened with all the staff, except for my key attending doctors. Now several court cases are being prepared on my behalf against the individual employees of the AIDS center, most of whom are no longer working there. I do not know if I contributed to their dismissal or not, but I had scandals, for example, with a lawyer of the AIDS Center. I asked for information about my state of health – this is an extract from the medical record. They provided it. This was in 2016, in September. After that I was in the AIDS center, a new attending physician sent me to a lawyer, because I had to sign the contract. The doctor did not specify what kind of contract it was, but I already knew that this is a list of ten items that a HIV-positive person must adhere to in order to prevent the transmission of HIV. Among these items was the following condition: I must tell people who use drugs together with me about their HIV status. Pay attention to the wording. A person who uses drugs with you is even the person with whom you could smoke weed. The person must report their status to a sexual partner, use a condom for any contact, but what about oral sex? And the non-transferable viral load? There was a bizarre item, such as I must report my HIV status any time I’m visiting a medical facility. Is a pharmacy considered a medical facility? And there were some more ambiguous formulations with obscure, obsolete logic underlying them. I refused to sign that document.
After that, I sent another request to the AIDS center to obtain an extract from my disease record. They did not answer me for three months. I sent another request with a copy to the Ministry of Health. The Ministry of Health did provide a reply – the administrative proceedings were initiated, where they requested my medical record and the AIDS Center provided the data to the Ministry. This is considered disclosure of the health data confidentiality. The proceedings were closed. I was never given an extract from the medical record. In its response letter, the AIDS Center urged me to respect Armenian am not obligated to respect them. Now my claim is under consideration by the court, because there are a lot of violations from the AIDS center. The director of the Armenian AIDS Center does not communicate with me, and some doctors, when I come, say: “Oh, shit, this f***** showed up again”. It’s funny, but most of the discrimination I experienced was from the AIDS center … I cannot say that all employees are like that, but there are employees who want to “sting” with every word, emphasize something, say something offensive.

There was a case: I needed to get pills, and the woman issuing them went to have a dinner. She came back with accusations that because of me she could not have lunch. I said that I can come later. Another doctor appears, not my attending physician, and starts yelling at me: “That’s you again! Each of your visits stirs up a new scandal. Why do you come here at all, get out of here…? “And he asks me:” Where do you work?”, and looks at my ponytail. I say: “You know where I work, what does this matter to you? I work in PINK Armenia”, and she replies:” Yes, I see it well”.

– (trying to stop laughing)

-Well, it’s like nothing openly offensive was said, but their attitude is obvious, isn’t it? By the way, she also does not work there anymore. I have nothing to do with it.

– Clear. Let’s talk about the region. In your opinion, what is missing in the system, what should be done to combat HIV?

– More attention should be paid to stigma and discrimination. For me personally, this is very important. I believe that without this we will not be able to take the epidemic under control unless we pay attention to stigma and discrimination – both to people living with HIV and to key populations. If a gay person is discriminated against because of their orientation, they know what attitude they will face in the hospital. And they just will not go there. A person does not know their status, does not receive treatment … This problem hampers prevention, it interferes with treatment, it stands in the way of UNAIDS 90-90-90 goal. This is one of the problems. I’m not saying that it’s the only one. In my perception, this is a priority problem. But there are many other problems too.

Stigma and discrimination arise when people who have power do not want to take vulnerable groups into account. This is a political issue. If there was political will, the problem would be solved.

How can HIV prevention be efficiently ensured among injecting drug users without substitution treatment? We are now in the country where there is no substitution therapy, but there is HIV prevention among people who use injecting drugs. But detoxification treatment, which seems to be the only available option, will not prevent the transmission of HIV. We will not contribute to HIV prevention by persecuting gays. On the contrary, this group is hidden itself, it is more difficult for the government to communicate information to them. In this case, in my perception, the risk of transmission increases, the risk of spreading HIV, the risk that people will harm themselves, get diagnosed at more advanced stages and start treatment later.

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