Zhenya Mayilyan: “We work so that HIV-positive people from Armenia could live decent lives.”

Zhenya Mayilyan, head of “Real Life, Real People” NGO, talks about problems of people from Armenia living with HIV in Russia

Real Life, Real People is an organization which delivers the Global Foundation’s project on care and support for people living with HIV in Armenia. This includes legal and psychological support, peer counseling, and providing patients with antiretroviral therapy: the latter being a priority. Our beneficiaries are Armenian citizens (in and out of the country) as well as foreigners who currently stay in Armenia. The organization has been working since 2003.

HIV prevention in Armenia

The image of HIV and AIDS prevention in Armenia has significantly changed for the better since we started working. The Global Foundation provides funds for HIV prevention among target groups, including drug users, LGBTIQ people, and sex-workers. In polyclinics, migrants constantly receive support, as this is a large and high-risk group. Doctors are being trained in the psychological aspects and consulting for people living with HIV; there are conferences and training with HIV experts for healthcare providers.

During the last 10 years, prenatal clinics have shown good results: most women undergo HIV testing and consulting there, although discrimination against HIV-positive women persists. Sometimes a pregnant woman becomes aware of her HIV-positive status when she visits a gynecologist and is tested. After that, her husband is also tested and diagnosed with HIV. In many cases, it is known that he went to Russia in search of a better life earlier.

Supporting HIV-positive Armenian migrants in Russia

Russia is the largest country of labor migration from Armenia, and the country with the largest Armenian diaspora. In addition to Russia, our citizens go to work in Ukraine and Kazakhstan.

The Russian law prohibits migrants with HIV to stay in the country; upon discovery, the migrant is deported and listed as undesirable. For example, an HIV-positive man from Armenia was separated from his Russian family for 15 years. One of our female clients had to transit a plane in Moscow on her way to a conference on HIV in Minsk. She was sent back to Yerevan directly from the airport, because 7 years ago she was diagnosed while in Russia and had become a part of this list of undesirable people. Here, we cannot help, as to solve these problems, law should change. The only help we can provide is to give these people continuous treatment with ART.

Among our beneficiaries, there are Armenian citizens who have been living undocumented in Russia for years. Also. there are temporary labor migrants who come to work for 6-9 months per year. They are certainly not doing it for the fun of it. Often, these are people from small Armenian towns and villages, where jobs are scarce, so leaving for Russia is their only chance to provide for their families.

Obtaining ART and its delivery to Armenians in other countries

People with HIV who live or plan to live abroad give our representatives a power of attorney to receive ART in an infectious disease hospital for them. This is how we regularly obtain medications. We send them (at our own expence) to Russia using regular flights or with other labor migrants. At the peak of the pandemic, when there were no international flights, people were unable to go to Russia or come back to Armenia, and this complicated the delivery of the drugs. In the autumn 2020, due to the armed conflict in Nagorny Karabakh, the situation with drug shipment remained critical, as it was impossible to send medications through Azerbaijan. We collaborated with Armenian Ministry of Health, and finally were able to send medications for people living with HIV, using cargo transportation companies. The Eurasian Female AIDS Chain and their project ART HELP supported us very much. They provided some of our clients in Russia with the treatment while we were solving the ART delivery problem. Every person who asked for our help in this difficult time received their therapy due to great job and mutual support from charitable organizations and community of people living with HIV.

People with HIV should undergo viral load and CD4 cell number testing annually to be able to continue treatment. The tests are free of charge, but we help our clients to pay transport costs (to get to Yerevan from other areas of the country). During the lockdown in 2020, many Armenians could not come from Russia for testing, and our clients who had been living in Russia for many years helped with information. They provided contacts of friendly healthcare providers. Finally, migrants were able to undergo testing and send results to Armenia.

HIV migration between Russia and Armenia

Vadim Pokrovskiy, a well-recognized epidemiologist, said several years ago: “Fifty percent of infection cases of Armenia happen in Russia”. Migration plays a very important role in the infection spread in Armenia. As most labor migrants from our countries work in Russia, we can conclude that [acquiring the infection] happens there. I cannot give the exact proportion of people living with HIV who got infected in Russia, but most migrants discover their HIV-positive status after they return from Russia.

Unfortunately, a traditional role of the woman in the family means she cannot ask her husband to take a test or use condoms when he comes back after working abroad. Consequently, women become infected from their husbands, and may also transfer the virus to their children (73 cases registered up to 31 December 2020).

According to official statistics, 97% of HIV-positive women in Armenia got the infection via sexual relations, in most cases with their only partner.

During the labor season (spring, summer, and autumn), there are whole villages in Armenia with not a single man older than 18. These [migrants] are sexually active males who may pay for sex or enter short-term or long-term unprotected relations while abroad.

People living with HIV in Armenia and help from NGOs

We have been working with people living with HIV for more than 17 years, and most people from this group are socially vulnerable. Many of them cannot afford 20 dollars for a trip to Yerevan once in two or three months. In general, the Armenian clinical guidelines on HIV permit to provide patients with enough medications for up to six months of treatment. But in practice, it depends on the availability of drugs in the infectious disease hospital. Someone may receive enough medications for three months, another patient will get therapy for one month only. This is where we enter. With the help of the Global Foundation, we can purchase and deliver ART. But people with HIV also have other needs.

To help people living with HIV solve their problems, we involve other programs and partners. We are a part of the Coalition to Stop Violence against Women, and together we helped people living with HIV to rent a place to live, pay municipal facilities, and provided them with clothing and food. Currently, we have a project dedicated to support and pay for medical examinations which are unaffordable for most people living with HIV. We also have a project based on crisis centers for HIV-positive women in difficult life situations. These centers provide them with a place to live and food, and we manage their health issues. To ask for help, everyone may contact us via social media.

As we are in close contact with people living with HIV and with migrants, we can prepare and send requests from this communities to the Ministry of Health. We work so that HIV-positive people from Armenia could live decent lives.

Governmental attitude towards HIV-positive people

In Armenia, ART purchase is financed by the Global Fund to Fight HIV, Tuberculosis and Malaria. The government’s role in the HIV prevention and treatment programs is about 50%. HIV-positive people in Armenia, including Armenian citizens, foreign citizens, or stateless people, are not afraid [of deportation] — we do not deport on the base of HIV status.

During the lockdown everyone in need received therapy in Armenia, regardless of citizenship. We sent a letter to MoH asking for ART provision for HIV-positive people from other countries (there were about 20 requests), and they helped. This is a victory, and I would like to see other countries following our example. We also had good experience in Uzbekistan where ART was provided to Armenian migrants, unlike in Georgia, where therapy was not provided.

Changes during pandemic

The situation became worse. The issue of centralization became more important, as people living with HIV all over the country had to be tested and receive treatment in the only AIDS center in Yerevan. It was very difficult, but during the pandemic, decentralization of HIV-related services started, finally. As hospitals working with HIV-positive people were transformed to COVID-19 hospitals, and simple polyclinics were not attending HIV-positive people, it was essential to find a way.

At the moment, patients with HIV receive medical care in infectious disease hospitals, but our government and the ministry of health have started the process of decentralization in the regions of Armenia. Some polyclinics already do HIV testing. We do not know yet when this system will become a part of healthcare in general, but we hope these improvements won’t be abandoned.

*HIV-positive citizens and stateless people are not being deported if they have family members who are citizens of the Russian Federation, foreign citizens, or stateless people constantly residing in Russia (Law “On prevention of spread of the disease caused by the human immunodeficiency virus (HIV-infection) in Russia”, Section II, Article 11, point 3).

Nadezhda Rogozina

Photo: Karolina Grabowska, Pexels

The article was prepared with support of Oxfam in the Russia Federation