"When the 3 of america were betwixt 7 and 8 years old, our adoptive parent said she had to archer america 2 secrets," 18-year-old Marina Nikitina recalls. "The archetypal was that we had been adopted. The second, she said, would beryllium revealed erstwhile we are grown-ups."
Then, arsenic adults, they learned they were HIV-positive. "Until property 7, we were fixed immoderate bitter syrup 3 times a time and 5 to six pills to swallow; later, we were allowed to instrumentality conscionable 1 pill," Nikitina says.
Nikitina, who is from the eastbound metropolis of Kazan, is 1 of immoderate 10,000 Russian youngsters betwixt 15 and 20 years of property who became infected with HIV portion successful their mothers' wombs. After giving commencement to her, her parent abandoned her astatine the hospital. The babe past spent 4 years successful a children's session for infectious diseases.
Free HIV therapy
In Russia, it is present chiefly adults who are infected with HIV. The proportionality of young radical among each those recently infected with HIV has fallen. In 2021, the property radical of 15 to 20 twelvemonth olds represented 0.8% of caller infections. In contrast, successful 2010 2.2% of each recently infected were young people, and successful 2000 the proportionality was arsenic precocious arsenic 24.7%.
In 2021, 13,203 children were calved to HIV-positive mothers successful the Russian Federation. Only 146 infants — astir 1.1% — contracted the microorganism from their mothers. Fortunately, this fig is declining, arsenic large women with HIV are entitled to escaped therapy to power the infection.
People who are HIV-positive person aesculapian attraction successful assorted determination AIDS centers crossed the country. These, however, seldom connection programs oregon psychologists that specifically cater to infected teenagers.
Marina Nikitina remembers however "everyone astatine the children's session avoided us; we were fixed nary mean tableware, nary toys. We had to deterioration pajamas with 'AIDS' emblazoned successful reddish letters connected our backs." She says 1 day, volunteers showed up. Among them was the pistillate who would aboriginal follow her.
Russian activistic Marina Nikitina Image: PrivatAged 17, she stopped taking her medicine to power the HIV infection. "There were mounting problems astatine schoolhouse and successful my family," she says. "My begetter and member began drinking, I went done a precise hard twelvemonth and forgot to instrumentality my pills. I felt wholly lost."
Now, she has resumed her HIV therapy. "I person understood that you cannot intermission taking this medicine; my immunity worsened, I ruined my body, and present I request to strengthen it again."
About 2 years ago, Marina fell successful emotion with different woman. She told her astir her HIV corruption connected the precise archetypal day. Marina says this has ne'er been an contented for her partner.
Psychological pressure
"Teenagers person a hard clip erstwhile mean hormonal changes are besides accompanied by an HIV infection, arsenic this increases the intelligence pressure," says Elena Kiryushina of the Joint United Nations Programme connected HIV and AIDS (UNAIDS). She is successful complaint of equality and younker affairs successful the UNAIDS Eastern Europe and Central Asia branch.
Elena Kiryushina of UNAIDSImage: PrivatKiryushina says it is precise problematic erstwhile teenagers halt taking their medicine retired of protest. "The medicine indispensable beryllium taken each time astatine the nonstop aforesaid time, [even though] these are large, bitter-tasting pills."
She thinks it would beryllium a amended to inject teenagers with this medicine as is the lawsuit successful different countries, since this signifier of administering the drug proves effectual for months. She besides says immoderate teenagers endure unpleasant broadside effects from HIV therapies, whereas others temporarily halt taking their pills conscionable to spot however they volition feel.
Teens fearfulness being ostracized
"HIV-positive teenagers often accidental they would similar to beryllium conscionable similar different teens," says Svetlana Izambayeva, a Kazan psychologist. "Some are sad, depressed oregon adjacent suicidal."
Izambayeva, who established a instauration to enactment HIV-positive women and children, says, "we tin spot erstwhile household problems arise, arsenic patients volition amusement a bigger viral load successful their blood." She addes that she knows "cases wherever teenagers wanted to halt taking their medicine to perpetrate suicide."
She recounts the lawsuit of a 19-year-old erstwhile activist who "fell successful love, moved successful with her partner, but kept her HIV corruption concealed from him, fearing helium would permission her."
Izambayeva says the pistillate stopped taking her pills successful bid not to uncover her secret, and yet died of AIDS. "After her death, her spouse kept visiting her grave, and said helium would person insisted she proceed her therapy if helium had known of her HIV infection."
Psychologist Izambayeva says Russian teens are apt to halt taking their HIV medicineImage: privatShe says teenagers betwixt 14 and 16 are astir apt to halt HIV therapy. And portion galore parents often archer them to support their predicament a concealed to debar being ostracized oregon discriminated against, children and teenagers presumption this precise differently.
"Children and teens with HIV seldom spot the constituent successful keeping their corruption secret and wonderment wherefore they should consciousness ashamed," says Yana Kolpakova, an activistic who openly talks astir being HIV-positive connected TikTok and Instagram. "There are galore who privation to speech to maine astir this," she says, "I constitute to them, without lecturing them."
Ukraine warfare complicates treatment
Kolpakova cooperates with Svetlana Izambayeva's instauration and different organizations. Together, they person helped HIV-positive Ukrainians who came to, or were brought to Russia, person aesculapian treatment. They person besides organized HIV medicine for Russians who fleeing their country.
Kolpakova says helping others has ever been a struggle, though the past twelvemonth was adjacent much challenging than ever. "You are burnt out and combat on, but officials bash not perceive to you, doing thing to assistance patients," she says. "On apical of that, we face major setbacks: the war, repressive laws, the curtailing of the rights of LGBT people."
Yana Kolpakova has near Russia and is applying for asylum successful the USImage: PrivatActivists and volunteers, who privation to stay anonymous, accidental that it has go overmuch harder and much unsafe to get overseas funds for home initiatives, arsenic Russian instrumentality could pb to them being labeled "foreign agents."
"I americium uncovering this unbearable and tin nary longer stay silent," says Kolpakova. She and her household near Russia in autumn and person applied for asylum successful the US. She intends to proceed moving from there.
This nonfiction has been translated from German.
English (US)