Girls in Uzbekistan lead the way in HIV treatment adherence

About

Aziza, a 19-year-old girl in Uzbekistan, recalls the day she learned that she had HIV: “I still remember the fear, the pain, and one overwhelming question—why should I live? – after my parents broke the news to me that I was living with HIV. I was just 14 years old. In that moment, I wondered, what is there in my life to look forward to? Everything seemed dark, colourless, and empty". Today, however, she is a champion for other adolescents and young people who are going through the same experience, thanks to UNICEF-supported self-help groups.

At the age of 14, Aziza joined a growing number of children living with HIV in Uzbekistan. She was one of up to 4,000 new HIV cases registered each year in a country where young people account for one in every four new cases¹ and where there are serious gaps in their adherence to treatment.

She recalls her shock and confusion when she heard the news:

“ … my mind was flooded with questions. I felt lost, confused, and unsure of where to turn for answers. The uncertainty was overwhelming, and I struggled to find someone who could help.”

Her story is all too common, not only in Uzbekistan, but across the Europe and Central Asia region, where around 20 children and adolescents were newly infected with HIV every day in 2023, bringing the total number living with HIV across the region to 33,000.² While the number of children and adolescents with HIV is rising, their treatment is declining, with coverage of ART falling from 89 per cent of those who needed it in 2018 to 73 per cent across the region in 2023.³ There were an estimated 760 AIDS-related deaths among children and adolescents in the region that year, with children under the age of 10 accounting for 84 per cent of those who died.⁴

Gaps in treatment adherence in Uzbekistan are linked, in part, to a lack of knowledge about HIV. In 2022, Uzbekistan’s Multiple Indicator Cluster Survey (MICS) revealed that only 10 per cent of young women aged 15-24 had a comprehensive knowledge of HIV, falling to just 6.5 per cent among those aged 15–19.⁵ Other factors deter treatment: a 2021 study by UNICEF and the Republican AIDS Center in 2021 found that girls aged 15-18 in urban areas were the most likely to miss routine counseling appointments at AIDS centres, citing fear of stigma (29 per cent), lack of financial resources (14 per cent), parental/guardian restrictions (7 per cent), and the difficulties of being away from home (7 per cent).⁶

Aziza and others living with HIV must also contend with and a policy environment that criminalizes HIV transmission and that sets the age of consent for HIV services too high (at 18 years of age). HIV testing in Uzbekistan is supposed to be voluntary, anonymous and confidential. There are, however, reports of – and provisions for – mandatory and compulsory testing for some people, including those who inject drugs and sex workers.

For adolescents, access to services isn’t just difficult logistically – it’s an emotional struggle. What they need is comfort, support and people who understand them. What they often find, however, is attitudes that stigmatize and isolate them. The 2022 MICS survey, for example, found that 76 per cent of women aged 15-49 believe that children living with HIV should not be allowed to go to school with other children.

Structural barriers often combine with stigma to deter adherence to treatment, including long waiting times at clinics, difficulties in scheduling appointments and transport issues, as well as concerns about confidentiality during clinic visits. Adolescents may also be held back by mental health issues and complex treatment regimes, while their caregivers often lack the knowledge, skills and resources to help them manage their treatment.

Closing the gaps in treatment access and adherence

Adherence to HIV treatment among children and adolescents matters. It increases their chance of viral suppression: the reduction of HIV in the blood to undetectable levels, which is vital for their health and reduces the risk of HIV transmission to almost zero.

To address the existing gaps in HIV/AIDS treatment access and adherence among adolescents, UNICEF has adopted tailored and beneficiary-centric approaches in Uzbekistan. UNICEF supports self-help groups by providing technical assistance and training for volunteers and peer counselors, and by creating safe and inclusive spaces for adolescents. In the capital, Tashkent, these groups reach around 100 adolescents each year, helping to reduce stigma, minimize exclusion and empower them to access the care and support they need, as Aziza confirms:

“I still remember the life-changing day I met a girl my age at the medical centre,” she says. “She introduced me to the amazing self-help groups for children and adolescents living with HIV, organized by the NGO Ishonch va Hayot. I started attending these groups, and for the first time in my life, I met people who truly understood me. We shared our experiences, lifted each other up, and stood by one another through the hardest times.

“For the first time, I didn’t feel alone. Each group meeting gave me strength—a reason to look forward to the future. I realized that my life had a purpose. The discussions, educational sessions, and peer-to-peer counseling helped me learn, unlearn, and grow. I gained so much—not just knowledge about HIV, but also resilience, self-acceptance and the courage to fight stigma.”

This approach has helped Aziza and other young women to accept their HIV status, adhere to treatment, reduce their viral load and prevent further HIV transmission. In Aziza’s case, it has also equipped her with the skills to become a champion for HIV treatment in Uzbekistan, motivating and supporting others living with HIV. Now aged 19, she is at university, where she continues to attend self-help groups and help others who are just starting out on their journey.

“Today, I accept myself. I feel stronger and more motivated than ever to adhere to my treatment. I’m so happy—my viral load is undetectable, and that gives me hope for my future” she says, with a confident smile.

UNICEF advocacy and support also resulted in the 2021 adoption of the National Clinical Protocol on HIV Care and Treatment for Children and Adolescents – part of the Government’s drive to prevent HIV infections among adolescents and improve treatment access and adherence.

In addition, UNICEF has supported the integration of HIV and the Integrated Management of Childhood Illnesses (IMCI) into pre-service medical training, as well as the establishment of a national team of paediatric AIDS trainers to enhance early diagnosis and rapid access to treatment and care for children living with HIV. UNICEF has supported the Republican AIDS Center’s Guide on Social work with Children and Adolescents living with HIV and the training of 120 psychologists and outreach workers from AIDS service organizations across the country to provide specialized care for children and adolescents living with HIV.

UNICEF’s efforts in Uzbekistan go beyond a health intervention – they offer hope to young women like Aziza, empowering them to rise above stigma and reclaim their future. For many, this support means dignity, resilience and the chance to live a life filled with purpose.

1.Republican AIDS Center, 2023
2 HIV estimates for children dashboard (global/regional level) - UNICEF DATA
3 Ibid.
4 Ibid.
5 State Committee of the Republic of Uzbekistan on Statistics and United Nations Children’s Fund (UNICEF), 2022. 2021-2022 Uzbekistan Multiple Indicator Cluster Survey, Survey Findings Report. Republic of Uzbekistan, Tashkent.
6. UNICEF and Republican AIDS Center, 2021.