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Nirmal
Friday, February 3, 2023

Russia: HIV positive youth are refusing treatment.

Health & FitnessRussia: HIV positive youth are refusing treatment.

“When the three of us were between the ages of 7 and 8, our adoptive mother said she had two secrets to tell us,” recalls 18-year-old Marina Nikitina. “The first was that we were adopted. The second, he said, would be revealed when we grew up.” (Also read: (World AIDS Day: Do you still believe these common myths about HIV/AIDS?)

Then, as adults, they learned they were HIV positive. “Until the age of 7, we were given some bitter syrup and five to six pills to swallow three times a day; later, we were only allowed to take one pill,” says Nikitina.

Nikitina, from the eastern city of Kazan, is one of about 10,000 young Russians between the ages of 15 and 20 who contracted HIV while still in their mothers’ wombs. After giving birth to him, his mother left him in the hospital. The child then spent four years at a children’s clinic for infectious diseases.

Free HIV therapy

In Russia, it is now mainly adults who are infected with HIV. The proportion of young people among new HIV infections has fallen. In 2021, the 15- to 20-year-old age group represented 0.8 percent of new infections. In contrast, 2.2% of all new infections in 2010 were young people, and in 2000 the proportion was as high as 24.7%.

In 2021, 13,203 babies were born to HIV-positive mothers in the Russian Federation. Only 146 infants – about 1.1% – contracted the virus from their mothers. Fortunately, this number is decreasing, as pregnant women with HIV are entitled to free treatment to control the infection.

People who are HIV positive receive medical care at various regional AIDS centers across the country. However, these rarely offer programs or psychologists that specifically cater to affected adolescents.

Marina Nikitina remembers how “everyone at the children’s clinic avoided us; we were given no normal table, no toys. We had to wear pajamas with ‘AIDS’ written on the back in red letters.” ” She says that one day volunteers came. Among them was the woman who would later adopt him.

At age 17, he stopped taking his medication to control his HIV infection. “There were growing problems at school and in my family,” she says. “My father and brother started drinking, I had a really tough year and forgot to take my pills.”

Now, he has resumed his HIV therapy. “I understand you can’t stop taking this medicine; my immunity went down, I ruined my body, and now I need to build it up again.”

About two years ago Marina fell in love with another woman. He told her about his HIV infection on the very first day. Marina says this has never been a problem for her partner.

Psychological stress

“Adolescents have a difficult time when the normal hormonal changes that accompany HIV infection add to the psychological stress,” says Elena Kryushina of the Joint United Nations Program on HIV and AIDS (UNAIDS). ” She is in charge of equality and youth affairs at UNAIDS’ Eastern Europe and Central Asia branch.

Kirioshina says it is very difficult when young people stop taking their medication because of protests. “The medicine must be taken at the exact time every day, (even though) they are big, bitter-tasting pills.”

She thinks it would be better to inject young people with the drug, as is done in other countries, because this form of drug administration is effective for months. She also says that some teens experience unpleasant side effects from HIV treatment, while others temporarily stop taking their pills to see how they feel.

Teenagers fear ostracism.

“HIV-positive teenagers often say they would like to be like other teenagers,” says Kazan psychologist Svetlana Izambieva. “Some are sad, depressed or even suicidal.”

“We can see when family problems arise, because patients have a high viral load in their blood,” says Izambayeva, who founded a foundation to help HIV-positive women and children. She adds that she knows of “cases where young people wanted to stop taking their medication in order to commit suicide.”

She describes the case of a 19-year-old former worker who “fell in love, moved in with her partner, but kept her HIV infection a secret from him, fearing he would leave her.”

Izambaifa says the woman stopped taking her pills to avoid revealing her secret and eventually died of AIDS. “After her death, her partner continued to visit her grave, saying that if he had known about her HIV infection, he would have insisted on continuing her therapy.”

Young people aged 14 to 16 are most likely to stop HIV therapy, she says. And while many parents often tell them to keep their anxiety a secret in order to avoid ostracism or discrimination, children and teenagers see it quite differently.

Yana Kolpakova, an activist who openly talks about being HIV-positive on TikTok and Instagram, says, “Children and teenagers with HIV rarely see and think about keeping their infection a secret. Why should they feel ashamed?” “There are many who want to talk to me about this,” she says, “I write without lecturing them.”

The war in Ukraine complicates the treatment.

Kolpakova cooperates with Svetlana Izambaeva’s foundation and other organizations. Together they have helped HIV-positive Ukrainians who came to, or were brought to, Russia receive medical treatment. They have also organized HIV medication for Russians fleeing their country.

Helping others has always been a struggle, Kolpakova says, though last year was harder than ever. “You are burnt out and keep fighting, but the officials don’t listen to you, don’t do anything to help the patients,” she says. “On top of that, we’re facing major setbacks: war, oppressive laws, curtailing the rights of LGBT people.”

Activists and volunteers, who did not want to be named, say it has become more difficult and dangerous to get foreign funding for domestic initiatives, as Russian law can label them “foreign agents.”

“I find it unbearable and can no longer be silent,” says Kolpakova. He and his family left Russia in the fall and have applied for asylum in the United States. She plans to continue working from there.

This article has been translated from German.

Translation war

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