“When we were three adopted children between the ages of seven and eight, our adoptive mother told us there were two secrets. The first is that we are adopted. She didn’t want to tell us the second until we grew up,” Marina Nikitina recalls.
The second mystery was HIV infection. “Up to the age of seven we were given a bitter syrup and five to six tablets three times a day. Later there was the option of just taking one pill a day,” she says.
The 18-year-old from the Russian city of Kazan is one of more than 10,000 young people aged 15 to 20 in Russia who were infected with HIV in the womb. Her biological mother left her in the hospital after the birth. She spent four years in a children’s hospital for infectious diseases.
In Russia, the proportion of HIV-positive youth in the 15-20 age group fell to 0.8 percent in 2021, according to official figures. In 2010 it was 2.2 and in 2000 even 24.7 percent.
In 2021, 13,203 children were born to mothers living with HIV in the Russian Federation. Infection was detected in only 146 infants (1.1 percent). This number is also declining, because pregnant women with HIV have access to free therapies.
In Russia, people living with HIV are treated in regional AIDS centers. However, there are usually no special programs or psychologists to help young people.
Marina Nikitina remembers the stressful time in the children’s clinic: “We were avoided by everyone there. We had no normal dishes, no toys. We wore pajamas with ‘AIDS’ written on the back in red letters. One day volunteers came to the hospital. Among them was my future adoptive mother,” says Nikitina.
She stopped therapy when she was 17. “A lot of problems came together at school and at home. My father and brother started drinking. I had a very busy year and forgot to take the pills. I felt totally lost,” she recalls.
Today she sticks to the therapy again: “I understood that you can’t pause with this drug. My immunity had deteriorated, I had wrecked my body. Now I have to build myself up again.”
Almost two years ago, Marina fell in love with a girl. On the first day, she told her that she was HIV positive. That wasn’t a problem for her friend, Marina emphasizes: “I want everyone to be treated equally, like a normal person.”
“Young people have a hard time. If an HIV infection comes along with the hormonal changes, it increases the mental stress,” says Yelena Kirjuschina. She is responsible for Gender and Youth at the UNAIDS Regional Office for Eastern Europe and Central Asia.
It is problematic when young people stop taking pills – usually out of a kind of protest attitude. “The drugs have to be taken strictly at a certain time every day. They are big and bitter pills,” says the expert.
They think it would be better if, like in some other countries, young people could have an injection that lasted for months. In some adolescents, according to the specialist, the therapy also causes unpleasant side effects. Others would simply test whether they felt good without the pills.
“Teens who are HIV positive often say they just like being like everyone else. Some of them are sad, depressed and even suicidal,” says Svetlana Izambayeva, a psychologist from Kazan. In 2008 she founded a foundation that helps women and children living with HIV.
“If there are problems in the family, we see this in the blood count, then the viral load increases. I know of cases where young people did not want to take medication and saw it as a way to end their lives,” said Izambayeva.
It was different with the death of a 19-year-old who had been an activist herself: “She fell in love and moved in with the man, but hid from him that she was HIV-positive for fear he might leave her because of it,” says the psychologist.
“She stopped taking pills because she wanted to keep her HIV infection a secret, and then died of AIDS: “After her death, her boyfriend kept going to her grave and saying that if he had known about her infection, he would have been on treatment passed.”
According to Izambaeva, young people between the ages of 14 and 16 who have HIV are particularly likely to drop out of therapy. While adults often ask them to keep the infection secret for fear of exclusion and discrimination, the opposite is the case with children and adolescents.
“Children and young people with HIV often don’t understand why they should remain silent or be ashamed,” says HIV activist Jana Kolpakowa, who openly states on TikTok and Instagram that she herself is HIV-positive. “Many want to talk about it , they write to me. I answer them, but not in a lecturing tone.”
Kolpakova works with the Patient Control movement, but also with Svetlana Izambayeva’s AIDS Foundation.
Along with other volunteers, she helped HIV-infected Ukrainians who came or were brought to Russia to receive therapy. And she procured HIV medication for Russians who fled their country.
Her work has always been difficult, says Kolpakova, but last year it became unbearable. “You’re burned out, you’re struggling, but the officers don’t want to hear you, they don’t do anything for the benefit of patients. And then this setback – the war, the repressive laws, the deprivation of rights from LGBT people.”
Anonymous activists and volunteers complain that obtaining foreign funding for projects has become more difficult and dangerous due to the risk of being declared a “foreign agent” under Russian law. “I just can’t watch it anymore and I don’t want to remain silent,” says Kolpakova.
In the fall, she and her family left Russia and applied for asylum in the United States. From there she wants to continue her work.
Adaptation from the Russian: Markian Ostapchuk
Author: Irina Chevtayeva
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The original of this article “Why young people in Russia drop out of therapy” comes from Deutsche Welle.