“We weren’t talking about HIV, we were talking about a cunning virus.” The history of the summer gathering of children living with HIV in Russia

The sixth Summer meeting of children living with HIV was held from June 6th to 16th 2021 in Southern Russia. The meeting, attended by more than 70 people, including 36 young children and girls aged 11 to 20, parents and specialists, gathered to teach the children and teenagers how to live with their diagnosis and to cope with the stigma.

Children, and especially adolescents, living with HIV are one of the most vulnerable groups in the world – and Russia is no exception. To date, there are more than 10,000 children living with HIV in the Russian Federation, many of whom lost their parents at an early age, are raised in orphanages, in low-income settings, or by single-parents or grandparents.

The 2021 meeting was dedicated to the memory of a young women named Diana, who died at the beginning of the year – just after her 19th birthday. Diana, like most of her peers, had often missed therapy since childhood. Her CD4 count never rose above 200.

Diana had taken part in several of these Summer meetings, she knew all about HIV and even shared her knowledge with other young people. Diana grew up and fell in love with a young man, she was so afraid that if he found out her status that he would leave her, so she stopped taking her ART. Diana faded quickly and the doctors were powerless to save her.

To continue reading the story, click here. It is also available in Russian here, and in German here.