Being HIV positive in Armenia: living against stigma

Being HIV positive in Armenia

How do HIV positive people live in Armenia? Medical workers, people living with HIV and public organizations defending their rights explain.

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“Being HIV-positive means being promiscuous”

36-year-old Nelly (not her real name) has been living with HIV for ten years and is fighting not only for her health, but also for the attitude towards her in society. People living with HIV in Armenia continue to face discrimination.

“I was three months pregnant. After the tests, the polyclinic told me to go to Acharyan, 2. I didn’t understand what this address was, I thought, where are they sending me? On the way, I began to call friends to find out where I am going. One of my relatives said that there is a medical facility there. I drove to the address and read the sign on the door – AIDS Prevention Center. And when I entered, they treated me as if I was a “street walker”, says Nelly.

After Nelly’s diagnosis was confirmed, her husband was examined as well. It turned out that he has been living with HIV for eight years.

“I got infected recently – I got married a few months before. I will not tell you what experiences I had before giving birth. I gave birth to my son by caesarean section, followed all the doctor’s orders, took medications on time, and did not breastfeed. Thank God the son was born healthy. But I had terrible fears during this period – I was afraid to even hug my child, to lay him next to him”, recalls Nelly.

Nelly says that nothing has changed over the years, especially in medical institutions:

“During pregnancy I went to sonography. Having learned about HIV, they refused to test me. And all this time, when I come to the clinic, I see with what disgust they touch my medical card, which I do not even have. They perfectly understand that they cannot get infected by touching the paper, but my presence is already unpleasant for them. Unfortunately, in our society, being HIV positive means being promiscuous”.

According to Nelly, people with HIV almost never admit it because they know how they will be treated.

“My relative, whom I asked about the address of the AIDS Prevention Center, told her whole family about me. When I went to her birthday, she did not allow me to kiss her. Then I was told that I was an unwanted guest in their house, that after my visit with my husband, they washed our plates with bleach.

My parents found out the truth when my husband passed away and I moved in with them. Their attitude towards me is normal, I talked with my parents, explained what HIV is like, how it is transmitted”, says Nelly.

Discrimination in medical institutions

The Real World, Real People organization has been operating since 2003. It was founded by a group of doctors and HIV-positive people. They are trying to do everything they can to improve the quality of life for people living with HIV. The chairman of the NGO Zhenya Mayilyan says:

“If we compare the situation ten years ago and now, a lot has changed – both in the public perception and in the level of people’s awareness. However, people living with HIV in Armenia are discriminated against in various spheres of life, in particular, in medical institutions, where a person has to report his or her HIV status when they needs some kind of medical intervention.

To a greater extent, they are discriminated against there. Outside clinics, there are not many cases of discrimination, because people simply do not talk about their status”.

Zhenya Mayilyan presents the Report on Discrimination against People with HIV for 2021 and gives specific examples of situations in which people find themselves:

“In one of the regional polyclinics, a dermatologist refused to examine a patient, saying that he should go “to his hospital”, meaning the National Center for Infectious Diseases. Dental centers often refuse to provide medical care to people with HIV.

One of the patients visited 4 dental centers in Vanadzor, and everywhere, having learned about the diagnosis, they refused to serve him. He was told that they did not have disposable instruments, or asked: “How are we going to disinfect our instruments after you?” These are groundless and discriminatory statements”.

Zhenya Mayilyan tells about a case when an HIV-infected person with a 2nd group of disabilities was refused a spinal tap in two well-known medical centers in Yerevan. They said that they do not provide such a service. The puncture was carried out only after the intervention of a social worker of a public organization.

Often nurses, thinking that they are following the safety protocol, put on several pairs of gloves before each injection so as not to get infected.

Zhenya Mayilyan is sure that the problem is the lack education. Experience has shown that not all medical workers have enough knowledge about the ways of HIV transmission.

To exclude cases of discrimination against people with HIV, she suggests the Ministry of Health to:

• periodically and in the long term, conduct education courses in clinics, in all levels of providing medical services,
• introduce mechanisms in medical institutions for monitoring courses and appealing of their results in cooperation with public organizations that have relevant work experience.

According to Zhenya Mayilyan, their organization works with 2,000 HIV-infected people, and this figure is growing, since every year 400-500 new cases are detected in the country.

“We also have beneficiaries outside Armenia – in Russia, Georgia, Ukraine, we also work with them – we provide consultations remotely. The most important service is the transfer of drugs to people to ensure the continuity of treatment”, she says.

“Diagnosis and treatment are available for everyone”

The Global Fund of the Ministry of Health informs that all citizens of the country and even non-citizens in Armenia have equal access to HIV prevention, diagnosis and treatment services.

“I consider this a great achievement. Since 2018, Armenia has had an effective state-funded mechanism for purchasing high-quality antiretroviral drugs.

We managed to achieve an extremely important decision allowing us to purchase medicines for AIDS / HIV, hepatitis, as well as anticancer drugs and laboratory tests on international platforms if prices are higher on the local market. They are provided to all citizens of Armenia, as well as non-citizens, free of charge”, says Hasmik Harutyunyan, head of the fund’s program coordination group.

In her opinion, the difficulties in the fight against HIV are mainly related to a lack of awareness:

“This is the way things are in society, in particular in vulnerable groups, and without a shadow of a doubt I can say that it is also common among health workers. Lack of knowledge leads to another problem – stigmatization and discrimination against HIV-positive people in the society, which seriously hinders the provision of services to them.

As a result of all this, we still have a low level of testing and early detection of HIV / AIDS in target groups – we are not even close to the level we are striving for. The level of involvement in the treatment process of already detected positive cases is also not satisfactory”.