"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.

From an early age, children being to realise that HIV is a taboo topic. After all, no one explains to them why they need to drink their medication or take their pills every day or why their adult family members don’t want to discuss the topic. When they reach young adulthood many protest by abandoning their antiretroviral therapy (ART). As a result, many adolescents are resistant to several classes of antiretroviral drugs by the time they reach adulthood.

“In memory of Diana”

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.

Those who care

These Summer meetings are led by two women, experts in their field, who unite the two worlds of medicine and activism.

Svetlana Izambaeva is a mother of two, an activist, and head of a non-profit charitable foundation. Svetlana was the first woman in Russia to publicly declare that she was living with HIV. She was also the first in the country to achieve custody of her younger brothers despite her HIV status. It was then that Svetlana began to fight to the rights of people living with HIV to adopt and become legal guardians. It is thanks to her that, almost 10 years later, there have been positive changes in Russian laws on guardianship.

When not fighting for guardianship rights, Svetlana works as a clinical psychologist, as the head of the ‘Information Centre for Social and Legal Support’ at the ‘AIDS Centre of the Republic of Tatarstan’, as a consultant for the International Labour Association, a  member of the ‘Interdepartmental Commission on HIV/AIDS’ under the Cabinet of Ministers of the Republic of Tatarstan, a member of the ‘Consortium of Women’s Non-Governmental Associations of the Russian Federation’, a member of the association ‘E.V.A.’, Associate Member of the ‘Eurasian Women’s AIDS Network, and was voted ‘Miss Positive 2005’.

Ekaterina Stepanova is an infectious diseases doctor, candidate of medical sciences, mother of two and a dedicated healthcare professional. Ekaterina is perhaps the doctor who has been working most closely with HIV community organisations for the longest time. Ekaterina has long worked with the most complex HIV cases, patients whom other doctors have “washed their hands of”.

Ekaterina has always, and continues to, talk publicly about problems with HIV treatment despite the risk of reprimand from management. Telling people about HIV, explaining complex concepts in simple and accessible language, is an integral part of being a good doctor. It was this part of her work, says Ekaterina, that led her to working with children living with HIV.

"Knowledge of the problem reduces anxiety. Understanding helps you make the right and independent decisions. And then life with HIV becomes much calmer," said Ekaterina.

About the Svetlana Izambaeva Foundation

In 2007, Svetlana Izambaeva gave birth to her daughter. It was at this moment that she realised that she wanted to help women living with HIV. A year later, in 2008, Svetlana and her husband created the charitable foundation named after her. Since then, the foundation has helped women, children and adolescents living with HIV or affected by HIV infection. The foundation also conducts awareness raising activities for specialists and young people.

Birth of an idea

It all started with a training session for children and their parents, which Svetlana and Ekaterina organised at the AIDS Centre in Kazan. This was their first attempt to get adults and children talking about HIV together.

"We managed to gather 15 children. We were unsure of which of them knew about their status and feared some unpredictable responses. That's why at the first training with children we didn't talk about HIV, we talked about a “cunning virus”." Svetlana remembers.

Svetlana recalled how much they worried on the eve of the first training session, but everything went well. The training showed that is necessary and important to talk about HIV with children.

After that, Svetlana began holding individual meetings, and later support groups with children, where they could talk openly about HIV. At one of these meetings a girl, Elena*, said that she would like to meet some other children living with HIV in other cities and dreamt of visiting the seas. The idea of a children’s rally was born.

“There’s a camp!” – the first meeting for children living with HIV, in the Russian Federation, was held

"We flew from Minsk, where we were trained to work with children living with HIV. Ekaterina put a napkin on my head, asked me to close my eyes and imagine in detail how I see our future meeting. I presented and described in detail everything I saw then.”

In 2017, the first camp meeting of children living with HIV was held in Sochi. It was attended by children and teenagers from cities across Russia. Some children came from orphanages, and several participants brough their parents all the way from Kazakhstan.

Every year the meeting program expanded to be supplemented by new interactive exercises and games. Today, neither Ekaterina nor Svetlana can accurately remember how the idea of conducting “quests” for children that help them better remember useful information appeared. However, these quests have become an integral part of the gathering, as have the burning of a symbolic stigma doll and many other exercises.

"When Sveta and I conduct the training, we don't prepare it in advance. We come, assess the group, identify needs and respond to these needs. But not all coaches can do that" Ekaterina notes.

Now, Svetlana and Ekaterina hold meetings year after year for children living with HIV and their families. Together they engage in logistics, recruit participants, conduct learning sessions and exercises, and in the evenings they monitor the safety of children. In the remaining months of the year, they work to raise funds for the next meeting - and that's the most difficult challenge for them today.

"Every time you think about a rally inside, everything shrinks, and suddenly we won't collect money. But I'm very inspired by Katya. She always says, "Only you can do it”” admits Svetlana.

"We collect because we understand how much good it does, and that only we can do it” says Ekaterina.

It has always been difficult to raise funds for the camps, but it becomes more difficult with every passing year. Unfortunately, those in office who hold the funds that should be used to support children are more willing to allocate funds for events for events involving eminent doctors and state institutions.

But no matter how difficult things get these two brave women stand their ground, they remain faithful and vow to continue the work they’ve started. Thanks to their persistence, there are the means and opportunities to gradually expand the circle of allies ready to help out at the rallies, camps and meetings.

How can I find out more and support these camps?

In 2021, Life4me.plus and UNAIDS provided financial support to the organisation behind the Summer meetings for children and adolescents living with HIV which meant the rally could take place.

Happy children and adults who became friends and family over these days have gone home and are waiting for the next meeting. It is hoped that these 36 children and adolescents will use what they’ve learnt to live happily and will now be able to overcome any obstacles - and that none of them will repeat Diana's fate.

It is hoped that Svetlana and Ekaterina will continue to work their magic for years to come, organising life changing events that would normally take a whole team to achieve. But there are more than 10,000 children and adolescents living with HIV in Russia, who also need support.

This is why it’s important that those who are able to financially support the good work that Ekaterina and Svetlana do – meaning that more children will be able to attend future camps, and the world will be a little brighter from those children’s smiles. If you are able, please donate here.

*Elena is now 19 years old and lives with her partner is a sero-different relationship.

Photos by: Marina Nagorova