"Be the change you wish to see": the (extra)ordinary story of a HIV+ girl in Uzbekistan

“I feel that it's not me who has changed more, but the people around me. In a positive way, of course”answered Elina when she was asked about how her life changed after her TV appearance in a popular TV show in Uzbekistan.

"Be the change you wish to see in the world", once Mahatma Gandhi said, and changes can come from brave decisions, as the one made by Elina, disclosing her HIV status during the castings for the show.

“I disclosed my status right at the casting because the project lasted for several months, and I needed to take medicine daily. I made the decision to be honest and mustered up the courage. I thought they wouldn't accept me, but I passed the casting" she explained.

Elina is a second-year student in the Faculty of Agricultural Economics at Tashkent State Agrarian University in Uzbekistan. Having grown up in an orphanage she discovered her status as a child. She was the first child living with HIV in Uzbekistan to start antiretroviral (ARV) therapy in 2006 and the first child to be abandoned by her parents as a consequence of her status. Her childhood, due to the stigmatization faced by people living with HIV, was not easy.

 “Children living with HIV, globally and in Uzbekistan, can be at higher risk of separation from their families and placement into alternative care. They are at risk of being abandoned by their parents due to stigma and discrimination prevailing in society, and thus some families place them into institutions simply because of their HIV status. Growing up in institutional care has a detrimental impact on children’s wellbeing and it adversely affects children’s health, development, and further reintegration into society” said Antonia Luedeke, Child Protection Chief at UNICEF Uzbekistan.

Throughout the TV show, Elina shared her experiences of being an orphan and living with HIV.

"When the TV episode aired, I started contemplating how people would perceive me, what they would say, and how they would react,” she recalled.  “Psychologists were working with us during the project, which made it easier for me to handle the pressure." 

From the end of the show, Elina’s personal Instagram account saw an outstanding growth in followers, and she started receiving messages from people living with HIV, thanking for her support and bravery.  

"I am grateful for the trust they place in me... As the TV show is watched in neighboring countries, I also get messages from people in Kazakhstan and Kyrgyzstan," Elina said.

For Elina, the daycare center for children and families affected by HIV played a crucial role. It provided a safe haven, support, and guidance throughout her childhood and teenage years. First day-care center for children and families affected by HIV opened in 2008 in Tashkent: the center is one of the nine daycare centers opened in 8 regions of Uzbekistan. From that moment, more than 6000 HIV+ children got support through their journey as children first, and then as teenagers living with HIV.

In many cases, children and adolescents living with HIV lack support from their families.

“I have talked to several adolescents living with HIV and their mothers, and I have heard many stories of stigma and discrimination. Very often only the child and the mother know of the child’s HIV status. In one case the grandparents found out and they didn’t want the child and her parents to live in the same house anymore. In several other cases children felt discriminated against in schools once their HIV status became known to teachers and other children. Very often stigma and discrimination are closely linked to a lack of knowledge of what HIV and AIDS exactly are” said Antonia Luedeke, Child Protection Chief at UNICEF Uzbekistan.

The daycare center of Tashkent opened a support group as soon as it was identified the need of supporting teenagers not only through professional consultations but also with the organization of masterclasses in different subjects, from languages to handicrafts. The objective of these activities is giving youngsters a set of skills that could be used in daily life, as the organization of handicraft masterclasses, that were aimed to provide them with helpful knowledge in order to reach economic independence. Thanks to these masterclasses, some girls decided to open their own little businesses: now, they started to teach the younger ones, establishing a spontaneous chain of solidarity aimed to help each other over time.  

The success of these initiatives highlights the importance of creating more adolescent-friendly health and social protection services, accessible at community level and inclusive for the most vulnerable adolescents living with HIV.

Elina keeps visiting the center, bringing children from the orphanage she grew up in, showing them the power of a community: she knows how being supportless feels, and she is aware that being among peers with shared experiences could change a lot in the sphere of self-perception.

“I know how self-acceptance is important. Supporting people and enabling them to get the right information about HIV, makes me feel that I am doing the right thing. I feel blessed and enriched” she said.

Elina remains optimistic about changing societal attitudes towards HIV. She believes that with the right information and education, people can overcome their fears and stigmas.

“The HIV epidemic in Uzbekistan continues to be a pressing issue, with thousands of new cases registered annually. However, Elina's story inspires hope and serves as a testament to the resilience and strength of individuals living with HIV. By sharing her journey, she raises awareness, fights stigma, and encourages others to join the cause of creating a more inclusive and accepting society.” – said Charos Maksudova, UNAIDS Country Director in Uzbekistan. 

Written by Amal Santini and Dilnoza Sametdinova.