Living with HIV status in Azerbaijan

Author: Ali Malikov

When speaking about HIV, it is impossible to be satisfied with only statistical increases or decreases, the number of tests, or treatment access indicators. We no longer live in the 1990s era of "AIDS panic"; people living with HIV should be presented neither as figures dangerous to society nor as targets of moral condemnation. Nevertheless, in Azerbaijan, HIV remains not just a medical status, but a condition often surrounded by fear that leaves an individual defenseless before the public. That is precisely why it is essential to speak about personal experiences, stigmatization, and the invisible pressures felt in daily life. In an environment where simply going to a hospital can spark suspicion and rumors about a person, it is not difficult to imagine the daily pressures experienced by HIV-positive individuals, especially those who are queer.

In Azerbaijan, the official approach to HIV is mainly built upon testing, prevention, registration, and treatment. An analytical document published in 2023—prepared by the Burnet Institute in collaboration with the Republican AIDS Center, the Ministry of Health project team, UNAIDS, and other partners—shows that there were approximately 10,000 people living with HIV in the country in 2021. It indicates that the epidemic is primarily concentrated among "key groups" such as men who have sex with men (MSM), drug users, and sex workers. In the 2015–2020 period, HIV prevalence rose from 2.2% to 2.6% among MSM and from 2.3% to 3.0% among female sex workers. One of the priorities for Azerbaijan is the expansion of prevention programs for MSM and People Who Inject Drugs (PWID), while another involves new or scaled-up programs for linkage to care, adherence (ensuring continuous treatment), and retention. In short, while the official and semi-official analytical framework recognizes risk groups, there is no specific step regarding how these groups—especially queer individuals—resolve issues of social security, stigmatization, and trust.

The majority of writing about HIV and AIDS emphasizes the necessity of protection, but the same attention is not shown to people already living with this reality. Why do these people, who exist in statistics, remain socially and institutionally invisible?

For example, 25-year-old Kamran*, who learned of his HIV+ status in May 2022, says this news created negative social and economic consequences in his life. According to him, after receiving his status, he feels as though he has to start everything several steps behind. "When looking for a job, my biggest difficulty is being forced to hide certain information about myself, especially my HIV status. Most of all, I fear this coming to light and then being forced to explain something to people," he says.

According to Kamran, he experiences direct problems during the hiring process when a military ID or a medical certificate is required. He states that because he was not called for military service due to his HIV status, this information appears in the documents. In some cases, he says his status is added to the health certificates required for work. Since employers often look for a "perfectly healthy" employee, this directly hinders his ability to find a job. Over time, a weakened immune system, frequently catching infectious diseases, and temporary absences from work lead to dissatisfaction from management. "I try to hide it every time. Sometimes I say my military ID isn't in Baku, it’s in the province. I try to delay and not give the document as much as possible. Sometimes it works, and sometimes they say, 'We can't hire you without this.' Throughout this whole process, I am consumed with anxiety. You struggle to find a job, pass the interviews, and in the end, they turn you away during registration."

According to him, the inability to find a job seriously impacts his daily life and financial situation. He is forced to live frugally, take on debt, and accept jobs with poor documentation and harsh conditions. With every new vacancy, Kamran must think not only "Am I suitable for this job?" but also "Will they accept me with this status?" or "Will I be able to hide it?"

To read more about the process of entering the labor market and choosing a direction for LGBTQI+ people, you can click here to read Nil's article, "Free choice or a decision framed by risks? Career choices of queers in Azerbaijan."

Aysel*, a 26-year-old trans woman who contracted HIV while in prison, says she had regular check-ups before being incarcerated and the results were negative. No virus was detected in the blood test taken when she was admitted to prison, either. Later, she recounts that a trans woman she knew from before was brought to the same cell; after that person's test results came back suspicious, Aysel wanted to be tested again. "When the result of my second test came back positive, my world collapsed. I didn't believe it. I called my lawyer and asked to be sent to the central hospital of the Penitentiary Service. My infection was confirmed there, and I began therapy," Aysel says.

According to Aysel, the initial period after the diagnosis was very difficult. She says she didn't want to eat, sleep, or speak, and she avoided knives, dishes, and kitchen utensils out of fear of transmitting the virus to those around her. While she has access to basic therapy because the medicine is provided under a state program, she emphasizes that other medical services cost money. "The prison staff behaved very cruelly. They stayed away from us as if it were transmitted via air droplets. There were those who treated us normally, but the general environment was built on a lack of education and ignorance. Moreover, if you are homosexual or trans, this hatred, humiliating words, and cynical looks increase tenfold."

According to her, there were both informed and uninformed people among the other prisoners, but the majority avoided sitting near her, talking, or even sharing the same space. She remembers one prison employee telling them, "You all should be gathered in one place and burned; you are both sick and filthy." After these words, the prisoners protested, called their lawyers, and an investigation into the matter was conducted.

In Aysel's opinion, the prison system is built not to protect the prisoner, but to exploit them. She says that if it weren't for the state program, it would be very difficult for prisoners living with HIV to access medication. She even claims that some vitamins and serums were sold to prisoners for money. After her release, both having been in prison and living with HIV+ status have become a double social burden for her. "A person falls into a state where they feel disgusted by themselves. I wouldn't wish this on anyone. Even in hospitals, after learning someone's status, they don't want to provide service; the discrimination that exists due to gender identity has become even more difficult after this situation," she says.

Murad*, 22, who currently lives in Europe, met the news of his HIV+ status relatively calmly. According to him, at first, it was only a possibility, and by the time the diagnosis was confirmed, he had already thought about what to do if he tested positive. Being well-informed made this news less shocking for him. "I was never afraid of the disease itself. Because we live in an era where medicine is advanced and this virus can be kept under control. I was more afraid of people's attitudes—that is, the stigma," he says.

Murad shared his status with only a few people he felt close to. He says he doesn't keep people in his life who wouldn't accept his status anyway. For this reason, while being HIV+ does not create serious obstacles for him in many areas of daily life, he says he acts carefully only regarding relationships. If he feels that the person in front of him will act with prejudice because of his status, he ends the relationship himself beforehand.

Nevertheless, because he spent the first three months after his diagnosis in Azerbaijan, he encountered unpleasant experiences in the healthcare system. Some medical workers at the Republican AIDS Center asked him for "shirinlik" (a bribe/tip) to provide him with several months' worth of medicine. At the same time, he notes that there were also medical workers who showed care and made that period less stressful for him.

Murad believes that one of the most dangerous misconceptions regarding HIV is the belief that the virus is transmitted through daily household contact, rooms, walls, and shared items. He remembers someone at an event he attended claiming that the virus stays in a room, "soaks" into the walls, and then passes to others. Another dangerous misconception is the idea that being HIV+ automatically means death. According to him, this drives both the person living with HIV and those around them into unnecessary panic.

Although Murad says he does not practice a specific form of hiding to protect himself, he does not share his status with everyone. He believes that as long as he is in treatment and his viral load remains at an undetectable level, he is not obligated to share it. In his opinion, the main reasons people living with HIV in Azerbaijan remain invisible are the healthcare system's poor public communication and the lack of comprehensive information on the subject in the education system. Because there are no street advertisements, campaigns, open calls, or educational programs, people obtain information through rumors and fear.

Murad says that people living with HIV appear very rarely in the media, and when they do, the subject is presented not in an educational way, but with frightening warnings. He considers posts that list symptoms and say "if you have these, go get tested" to be wrong. In his opinion, such generalized content creates additional fear for both people living with HIV and others.

It is possible to measure and control the spread of the virus. However, changing the conditions of living with it is much more difficult. When the fight against AIDS is measured only by medical indicators, the invisible pressures people experience are overlooked. When public communication consists only of calls to "protect yourself," this language often keeps people living with the virus in a state of danger and fear. However, people living with HIV are already living within this society today. Any incomplete approach established without seeing this reality cannot bring about effective change.

*The names of respondents have been changed for security reasons.

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