“When the three of us were seven or eight years old, our adoptive mother told us that we had to tell two secrets,” recalls 18-year-old Marina Nikitina. “The first is that we were adopted. The second, she said, will become apparent when we grow up.
Later, as an adult, I found out that I was HIV positive. “Until the age of seven, we were given bitter syrup three times a day and five to six tablets to swallow.
Nikitina, from the eastern Russian city of Kazan, is one of about 10,000 Russian adolescents aged 15 to 20 who contracted HIV while in their mother’s womb. After giving birth to her, her mother left her in the hospital. After that, the baby spent four years in a pediatric clinic for infectious diseases.
free HIV treatment
In Russia, HIV is now mainly infected by adults. The proportion of young people among all newly infected with HIV is declining. In 2021, the age group 15 to her 20 years accounted for her 0.8% of new infections. In contrast, in 2010 her 2.2% of all new infections were young, and in 2000 that percentage reached her 24.7%.
In 2021, 13,203 children will be born to HIV-positive mothers in the Russian Federation. Only 146 infants (approximately 1.1%) acquired the virus from their mothers. Fortunately, this number is declining because pregnant women with HIV are entitled to free treatment to control their infection.
People who are HIV-positive receive medical care at various regional AIDS centers around the country. However, these rarely offer programs or psychologists that specifically cater to infected teens.
“Everyone in the pediatric clinic avoided us. We weren’t given normal dishes or toys,” Marina Nikitina said. I did,” he says. She says that one day a volunteer showed up. Among them was a woman who later became an adopted daughter.
At age 17, she stopped taking her medication to control her HIV infection. “There were a lot of problems at school and in my family,” she says. “My father and brother started drinking. I had a very difficult year and forgot to take my medicine. I was completely lost.”
She is now resuming HIV treatment. “I understand that I can’t stop taking this medicine. My immune system has weakened and my body has been destroyed, so I need to strengthen it again.”
About two years ago, Marina fell in love with another woman. She told her about her HIV infection on her first day. Marina says this has never been a problem for her partner.
psychological pressure
“Teenagers struggle with normal hormonal changes accompanied by HIV infection because of the increased psychological pressure,” says Elena Kirishina of the Joint United Nations Program on HIV and AIDS (UNAIDS). . She covers equality and youth affairs for UNAIDS’ Eastern Europe and Central Asia chapter.
Kiryushin says it is very problematic for teenagers to stop taking drugs out of protest. “Medicines should be taken at the same time each day. [even though] These are large, bitter-tasting tablets. ”
She thinks it would be better to inject the drug into teenagers, as is the case in other countries. She also notes that some teenagers suffer unpleasant side effects from HIV treatment, while others take medication temporarily just to see how they feel. I am quitting.
Teenagers fear being exiled
“HIV-positive teenagers often say they want to be like other teenagers,” says Kazan psychologist Svetlana Izambayeva. “Some people get sad, depressed, and even suicidal,” she says.
“The increased viral load in the patient’s blood tells us when there will be family problems,” said Izambayeva, who founded a foundation to help HIV-positive women and children. She added that she knows of “cases of teenagers who quit drugs and committed suicide.”
She tells the story of a 19-year-old former activist who “fell in love and moved in with her partner, but kept her HIV infection a secret from him for fear he would leave her.”
Izambayeva said the woman stopped taking her medication to keep her secret and eventually died of AIDS. “After her death, her partner continued to visit her grave, and if she had known of her HIV infection, he would have insisted that she continue her treatment, he said.
Teenagers between the ages of 14 and 16 are the most likely to stop HIV treatment, she said. Many parents tell them to keep their plight a secret so they don’t get ostracized or discriminated against, but children and teenagers see this very differently.
“Children and teens with HIV have little understanding of what it means to keep their infection a secret and wonder why they should feel ashamed,” he said. Activist Yana Kolpakova, who has openly spoken about being HIV-positive on TikTok and Instagram, says.
Ukraine war complicates treatment
Kolpakova works with Svetlana Izambayeva’s Foundation and other organizations. Together they have helped HIV-positive Ukrainians who have come to or been brought to Russia to receive treatment. They also organized HIV medicines for Russians who fled their country.
Kolpakova says helping others is always a struggle, but last year was more difficult than ever. , is not doing anything to help patients,” she says. ”
Activists and volunteers who wish to remain anonymous may be labeled “foreign agents” under Russian law, making it much harder and more dangerous to obtain foreign funding for domestic initiatives. It is said that
“This is intolerable and we cannot keep silent any longer,” says Kolpakova. She and her family left Russia in the fall and applied for asylum in the United States. She intends to continue working from there.
This article is translated from German.
