He wanted to name his HIV Marla, like in the film Fight Club. Danylo Stolbunov is an 18-year-old Ukrainian. He treats his HIV status with humour and his therapy with responsibility. He now works for a youth organisation and tells children why they should not be afraid of HIV. Danylo talks about his life and what he does in an interview with Ukrainian TV channel Hromadske.UA.
Danylo Stolbunov is a co-founder of the youth organisation TEENERGIZER!, which informs young people about HIV issues and counsels those who have learned about their status. All participants are teenagers. Three of them are HIV-positive, one of whom is Danya.
Daniil says that he used to want to become a pathologist. ‘I don’t even know what people find more interesting: that I wanted to become a pathologist or that I have HIV,’ he jokes. He immediately recalls a vivid example of discrimination: “When I applied after 9th grade and gathered all the documents, all I needed was a final certificate from the doctor at the student clinic. I went there with my mum, had a long conversation, and was asked to leave. When I came back in, the doctor and nurse exchanged glances and said, “Well, you understand. You can’t study here.” I didn’t know my rights at the time. But according to the law, HIV-positive people can be doctors, except for dentists and surgeons.”
Danya considers himself one of those people who have psychologically defeated HIV. “The most important thing for me is to change young people’s attitudes towards HIV. When I was little, I saw posters in the hospital with the words “AIDS — the plague of the 21st century”. In reality, that’s not true. The epidemic began the day before yesterday. And now we need to do something. And not just “in the field” — handing out condoms, setting up needle exchange points and the like. We need to solve this at the highest level — round tables, meetings, negotiations,” says Daniil.
He says that there are currently major problems with funding youth organisations that provide information about HIV. The young man sees this as a specific problem: ‘We have 123,000 children at risk. And due to the lack of funding and information, this number is growing.’
He also points out: ‘According to UNICEF, around 29 people aged 15 to 19 are infected every hour worldwide.’
In addition to funding and outdated approaches to tackling the spread of HIV, Danya talks about the lack of information and stereotypes. For example, that you cannot have sex with an HIV-infected person. The young man notes that everyone who knows their status should take antiretroviral therapy. It reduces the viral load — the number of copies of the virus per millilitre of blood. And when this load is undetectable, the person becomes safe:
‘That means the risk of infection, even if you have sex without a condom, is minimal. That’s how healthy children are born. But it’s still better to protect yourself and tell your partner about your status right away,’ says the young man.
‘I found out I had HIV and it made me feel better.’
Daniel walks into the organisation’s office, where there are posters about HIV, branded posters from the organisation, and business cards with HIV testing locations on the walls. He pours some tea and says, “The worst thing is when someone pretends to understand everything. You wait for them to ask you about HIV so there won’t be any misunderstandings or cheap intrigue. But people don’t ask, and that’s really bad.”
The young man found out he had HIV when he was eight years old: “My mum gave me some pills for a whole year, saying they were vitamins for my immune system and liver. It made me very nervous. And then, after a fight, I asked her what the pills were for. She said, “You have HIV”. And I felt better. Most people get stressed when they find out about their status. I had been undergoing therapy for a whole year without knowing why, and when I found out I had HIV, I thought, “Well, HIV is HIV.” Danya never advertised it, but he didn’t hide it either. At school, he had to explain to a classmate what HIV was through the concept of AIDS.
In college, a teacher gathered his classmates after class and said, ‘You know that you have an HIV-positive person in your group.’ He says that everyone immediately thought of him: “Probably because I drew attention to myself in the group and joked a lot about it. Later, everyone found out, but there were no stories of discrimination.”
Danya says that it is impossible to tell immediately that a person is HIV-positive: ‘Unless it’s written on their forehead. They don’t feel anything, they have the same immunity when taking therapy. If you don’t take it, of course, you won’t live long.’ Daniil is tested for the amount of virus in his blood every three months. “In 2015, 0.4% of young people in Kyiv were tested, which is about 400 teenagers out of 116,000. Testing is the first step in fighting the epidemic. A lot of people are afraid to get tested. ‘Oh well, whatever. It’s better not to know.’ No, it’s better to know. If it is detected in time, it will not cause harm,” says Danya.
‘We call HIV “vichuha” and AIDS “spidak”.’
Sitting at his desk, the young man manages to update the organisation’s website and respond to emails. At the same time, he recalls: ‘Every HIV-positive child reaches a point when they stop taking their medication. They lack awareness. And that’s a real problem. Because treatment continues to save lives. We need to keep saying that.’
Daniel himself once stopped taking his medication because he felt fine. But he realised in time that he felt healthy precisely because of the therapy. He takes his pills out of his backpack. “The medication is free. The state provides it to people. I take pills several times a day — in the morning, afternoon and evening. But it’s not easy to get them now.‘ He also notes that people who have overcome HIV psychologically often joke about it: ’We calmly call each other “AIDS patients”, which is funny when taken in context. We call HIV “vichuha” and AIDS “spidak”. When people ask me, “How’s your HIV?”, I reply that I’m sorry I can’t shake hands with it.”
For Dani, the most disgusting thing is when people pity him. But he says that this hardly ever happens now. “You can bum a cigarette off someone and say, ‘Don’t worry, HIV isn’t transmitted that way’ . People who don’t know anything about it are shocked. It’s like a person in a wheelchair joking about wheels,” the young man smiles and leaves the office. He takes the underground to get to the station in an hour. He is going to give an interview for World AIDS Day. He says that it is on this day that journalists pay attention to them. This is because there are very few teenagers in Ukraine who can talk openly about it. He shows his ID on the underground and says that HIV gives him a lot of ‘freebies’. After thinking for a moment, he remarks on the escalator: ‘For me, my HIV is an opportunity to be responsible for my health and life, and for my family.’
Just before entering the carriage, he asks, ‘Do you know the film Fight Club? There was a character who said that if he had cancer, he would call it Marla. I would also call my HIV Marla.’
