The story of an HIV-positive girl who was the first to start antiretroviral therapy in Uzbekistan

Story of Elina

Niginakhon Tursunova
Элина - ракурс сзади
UNICEF Uzbekistan
09 August 2022

According to the Republican AIDS Center, 4000 cases of HIV infection are registered annually in Uzbekistan. In 2018, the number of children diagnosed with HIV amounted to 461. Such children are at risk of being abandoned by their parents due to stigma and discrimination prevailing in society.

Children cannot be blamed for being infected. However, some families place children in institutions because of their HIV- status. Moreover, HIV-positive newborns are left in maternity hospitals right after birth. They are being deprived of their rights to a family from the moment they take their first breath.

Life in institutions has a detrimental impact on the children’s well-being since they are deprived of living in family care and being loved. Growing up in institutions adversely affects children’s health, development, and further reintegration into society.  

In Uzbekistan, stigma, and discrimination still prevail in society. The reason for this phenomenon is the lack of knowledge about HIV.

"The doctor told me that I am the first HIV-positive child which got a chance for a normal future since this was a time when antiviral therapy entered Uzbekistan".

Today, there are fifty-four children with HIV-positive status living in institutions in Uzbekistan. Elina, a 22-year-old girl left the institution four years ago. She shared her story about her life struggles and dreams about the future:

I was diagnosed with HIV when I was born. I got it from my mother. She left me in maternity hospital when my diagnosis was confirmed. When I turned six, I got a chance to try the first medicines which prevent the virus spread. The doctor told me that I am the first HIV-positive child which got a chance for a normal future since this was a time when antiviral therapy entered Uzbekistan.

I heard about my HIV -status when I was 13 years old. I did not panic; my reaction was normal even though I heard about HIV before. Soon I found out that everyone in the orphanage knew about my status. Surprisingly, I was not treated differently there since this orphanage already had experience with children like me. We had about 11 HIV-positive children living there at that time. But then I was moved to another orphanage. It was different there. I was not treated well. Boys were discriminating and bullying me. They were telling others not to be close to me.

One month ago, I visited my friend in an orphanage He told me that HIV-positive children like him are being separated from healthy children in a different room. They eat and drink from dishes that are marked for them.

I was shocked that teachers are not aware of the power of medicaments.  Both teachers and children need to understand that the spread of the virus can be prevented, and the child can continue living a normal life. Therefore, caregivers in the institutions need to pay close attention to children and make sure they never miss taking medicine.

I immediately requested specialists to conduct training for teachers of that orphanage. The next week the educational training was held. The situation is better now. 

During my lifetime in an orphanage, I have never been adopted since healthy families did not want to take children living with HIV. Now, since there is a new law on the reduction of children in childcare institutions, orphanages started placing children with HIV in healthy families as well. 

"Another issue I faced is restrictions in purchasing a degree and profession".

A year after leaving the orphanage I got a one-room apartment from the government. I share it with another girl.

A few years ago, I started looking for my biological family and found out that my mother and grandparents died. I found my father and my brother. They are settled in Russia and now we are in touch. Unfortunately, I cannot move there since HIV-positive migrants are prohibited from permanently living in Russia according to the federal law On the Legal Status of Foreign Citizens in the Russian Federation” dated July 25, 2002.

Another issue I faced is restrictions in purchasing a degree and profession. My HIV status did not allow me to enter a medical college, or work as a hairdresser, doctor, chef, so I had to enter an economic faculty. But now things have changed, and HIV-positive people are open to working in many places which do not require close contact with blood.” 

Elina is the first child diagnosed with HIV in Uzbekistan. She is also the first child abandoned for her HIV-status and the first child to receive antiretroviral therapy in Uzbekistan in 2006. Elina is an example of a powerful girl who has been trying to receive equal treatment from peers, teachers, and even employers without giving up. She is now making efforts to help other children with HIV- status living in institutions. She visits them, talks, and gives them the motivation to live. She initiates training of childcare specialists on HIV/AIDS to transform their mindset and break the stigma.