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Thursday, February 10, 2022
Elena
The Meeting Targets and Maintaining Epidemic Control Activity in Central Asia

Elena’s story about living with HIV

Elena (name changed) is 35 years old and lives in Ust-Kamenogorsk, a city in East Kazakhstan.

Ust-Kamenogorsk or Öskemen city, is the capital of the East Kazakhstan region. It lies in the foothills of the Rūdnyy Altai Mountains and at the junction of the Ulba and Irtysh (Ertis) rivers. Founded as a Russian fort in 1720, it later became a center of trade with Mongolia and China and the gateway to the mineral wealth of the Rūdnyy Altai. Ust-Kamenogorsk is now a major mining hub in Kazakhstan.

For Elena it has always been important to have a family, or “your people,” the kind of people with whom she could talk and be understood and accepted. 

“When I was 24, I went to prison, and there I found out that I had HIV. I had used drugs with my friend who had HIV. In prison, there were several people like me (with a positive HIV status), and I immediately stuck to them. I thought maybe I could be close to them, they would be people who I could rely on. They said that HIV treatment is a poison, and I should not take it. I was feeling good at that time and followed their lead, thinking there really was no need for ART (antiretroviral therapy).”

“Five years later I was in jail again and  found out about my pregnancy. Doctors said that I should take ART for the child to be healthy. I had very severe side effects from the ART (nausea, loss of appetite, exhaustion, weight loss), and immediately after the birth of my daughter, I quit treatment. I thought ART would kill me, and my daughter would be left by herself.”

“After I was released from jail, I was completely alone with a young child to care for. I had nowhere to go, no place to live, nothing to eat. My health deteriorated. I had arthrosis, severe weight loss, and weakness. I was depressed, as if I had fallen out of life.”

When Elena got to Ust-Kamenogorsk, the AIDS Center doctors advised her to contact Answer, a community-based organization, supported by the USAID-funded Meeting Targets and Maintaining Epidemic Control activity. Answer implements services to help people living with HIV initiate and continue treatment. Peer navigators—trained professionals, often people living with HIV themselves, to advise peers on key issues related to living with HIV and share their personal experiences, providing motivational counseling to clients and assisting them in accessing services at medical facilities.

“I decided to go and meet nice people there. Again, the same thought crossed my mind—what if I can find ‘my’ people here, the ones who I can trust and rely on? I started attending support groups. These people became really close to me. They really supported me at that time and helped me get out of my depression.”

“My peer navigator, Sergey Baranyuk, supported me a lot. He helped me to get a residence permit, a registration of disability, and even helped me with the basics such as getting food. I attended all of the self-help group meetings, participated in World AIDS Day campaigns, and other related events. The Answer team became a real family to me: They have always supported and helped me. And what is most important, with their support I started taking ART. I realized that life goes on, and once I restarted treatment, my health started to improve.”

For Elena and many other women, community organizations like Answer may provide the only safe place to freely talk about difficulties, be heard, and get the necessary medical services and other support they need.

“A year later, after Answer saw my potential, I was invited to work as a peer navigator, and I was incredibly happy to join the team. I really enjoyed helping people. And, it gave me a stable income, and my life started improving!”

“As a peer navigator with Answer through the Meeting Targets and Maintaining Epidemic Control activity, I help people to know their HIV status, receive community support, and start treatment on time. My work changed my life for the better. Today, I have an undetectable viral load which means I am protecting my partner from getting HIV from me. I feel great. I have my own apartment; my child has food, clothes, and shoes, and goes to school. I have a real and strong family. I got married last June, and we are planning to have a child together. Now, I no longer use drugs. I have the opportunity to take care of my family. I live a full life and enjoy every day. And the main thing is that I have learned to live happily despite my HIV status, and now I help others, and for that many people say: ‘Thank you, Elena.’ And in turn, I want to thank USAID for their support of such programs that help people living with HIV and give them a chance to change their lives for the better.”

“I have a lot to be proud of! I no longer feel lonely. I have a big family—my husband and daughter, as well as my dear colleagues, ‘my’ people who will always understand and support me. Now, I actually have a family photo that I can show. There are a lot of close people on it; everyone is happy and loves each other!”

With support from the Meeting Targets and Maintaining Epidemic Control activity, Answer helped about 560 people living with HIV initiate and sustain treatment between August 2020 and January 2022. Their peer navigators have been critical to this progress and are always ready to assist others in overcoming barriers to care.

Last updated: February 10, 2022

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