He would like to call his HIV ‘Marla’–the same name given to a cancer by a character in “Fight Club”. Daniil Stolbunov is 18. He deals with his HIV-positive status responsibly, with humor, and therapy. He works at the youth organization telling teenagers why there is no need to be afraid of HIV.
“Two years ago, I split up with my girlfriend. She told me that after that, nobody from the medical college wanted to go out with her. Friends were saying: ‘Wait, she must have AIDS, she slept with a person who is HIV-positive.’ And those are the students of the medical college,” says Daniil on our way to the office.
He didn’t tell his girlfriend right away about being HIV-positive. But when the moment came to do so, her reaction was quite calm. She said that she had already guessed because of his jokes about it.
Daniil Stolbunov is a co-founder of the youth organization “Teenergizer!” aimed at informing young people about the problem of HIV and consulting those who have been diagnosed about their status. All the members are teenagers. Three of them are HIV-positive. Daniil is one of them.
On our way, he said that he had wanted to become a pathologist: “I don’t even know which of people’s reactions is more interesting to me – on the fact that I had a desire to become a pathologist or on the fact that I’m a HIV-positive,” Daniil jokes.
He gives an example of the discrimination he faces:
“When I was entering college, I collected all the documents and there was a need to get a final medical report issued by the doctor from the student clinic. I came there with my mother and there was a long conversation. I was asked to wait outside. When I came back I was told the following: ‘You understand everything. You can’t study here.’ I didn’t know my rights then. But according to the law, an HIV-positive person can be a doctor, except for a dentist or a surgeon.”
Daniil says he has beaten HIV psychologically.
“The most important thing for me is to change the attitude of young people towards HIV. When I was young I saw a poster that read: ‘AIDS is the Plague of the 21st Century’ in the hospital. It’s not true. The epidemic started days before yesterday. We should act. Not only ‘in the field’, by handing out condoms and establishing needle exchange points, but solving it at the highest level by holding round tables, meetings, and negotiations," says Daniil.
According to Daniil, there is a big problem with funding of youth organizations aimed at informing young people about HIV. There are 123,000 young people at risk. And because of the lack of funding and information, that number is growing.
He also adds that according to UNICEF, each hour, on average 29 people get infected in the world.
For an entire year, my mother was giving me medicine telling me that it was vitamins to enhance my immunity or for my liver. Then I asked and she said that I had HIV. I did feel relieved.
In addition to the lack of funding and outdated approaches to solving the spread of HIV, Daniil mentions the fact that there are a lot of stereotypes, for instance, that you can’t have sex with HIV-positive people.
He stresses that every person who knows about his or her status must take antiretroviral therapy. It reduces the viral load - the number of copies of the virus per milliliter of blood. And when that load is so small that it can’t be determined, the person is safe:
"That means that the risk of being infected even if you had unprotected sex is minimal. Healthy children can be born. Still it’s better to tell inform the partner of your status, "Daniil says.
“When I found out about HIV I did feel relieved,” he says.
He comes to office of the organization; there are posters on HIV on the wall, branded posters of the organization, cards with addresses of HIV testing centers. “The worst is when a person pretends to understand everything. You are waiting for him or her to ask about HIV and get rid of all the misunderstandings. But people do not ask and it's very bad".
He found out that he was HIV-positive when he was 7:
“For the entire year I was on antiretroviral treatment. My mother was giving it to me and saying those were vitamins to enhance my immunity or for my liver. It irritated me much. Then after a scandal we had a talk and I asked what I was taking the medicine for. She told me that I’m HIV-positive. I did feel relieved. For many people it’s stressful when they find out about their status. They feel bad. But in my case, it made me feel better. When I found out about HIV, I just accepted it. I have never been afraid of it.”
Daniil has never made it a secret. At school there was a need to explain to the classmates what HIV is through the concept of AIDS.
In the college after class, the teacher gathered all the classmates and said: "You must know that there is an HIV-positive person in your group." Everyone guessed that it was Daniil, because he was joking a lot about this topic. However, he didn’t face any discrimination then.
“It’s impossible to understand at once whether a person is HIV-positive or not, if it’s not written on their forehead, of course. When such people are being treated, they have the same immunity. Of course if they aren’t, they will not live long.”
In the organism of HIV-negative person there are, on average, about a thousand cells in the immune system. AIDS starts when there are less than 200 cells. For HIV-positive people, the norm is about 600.
Daniil tests for the number of these cells every three months. "Now I feel healthier than many of my friends. I’ve become more energetic, but not from therapy. It doesn’t give me energy."
He is sure that many people think "It doesn’t have anything to do with me, it happens somewhere in Africa. In fact, HIV affects even those who think they have nothing to do with it.”
“Only 0.4% of young people passed tests in Kyiv in 2015. It means only 400 teenagers out of 116,000. The test is the first step in the fight against the epidemic. A lot of people are afraid to pass it. They think ‘It’s better not to know.’ No, it’s better to know. Because if you find out about HIV in time, it won’t harm you.”
“The worst is when a person pretends to understand everything. You expect that when they’ll ask you about HIV there will be no misunderstandings. But people do not ask and that's bad.”
We have our names for HIV and AIDS.
"For each HIV-positive teenager, there comes a time when he or she stops taking the treatment. There is a lack of positive attitude to antiretroviral treatment and no awareness. This is a real problem. Still, the therapy continues to save lives. There is a need to emphasize this constantly,” says Daniil when answering e-mails.
There was a period when Daniil also refused treatment because felt well. But he understood just in time that he felt well because he was taking treatment.
He takes the medicine out of the backpack: “You can get medicine for free. The state provides people with it. I take medicine several times a day – in the morning, in the evening and at night. But it’s not easy when it comes to obtaining it.”
Also he notes that people who beat HIV psychologically often joke about this topic. When someone asks how his HIV is he says: “It’s a pity that I can’t shake its hand when I greet it in the morning.”
Daniil says he doesn’t like it when people feel sorry for him. Actually, he doesn’t face this often.
“You can ask for a cigarette and say: ‘Don’t worry, HIV isn’t transmitted this way.’ People are usually shocked. It’s the same when a person in the wheelchair will joke about wheels,” he smiles and leaves the office.
He gets to the railway station by subway. He will be giving an interview. Journalists usually pay more attention to them when AIDS Day is approaching. There are not many teenagers in Ukraine who can openly speak about that.
He shows his certificate and says that with HIV he gets a lot of things for free. Then he mentions: “For me, HIV is an opportunity to be responsible not only for my health and life, but also for the lives of relatives.”
“Have you seen “Fight Club”?
- There was a character that said: ‘If I had a cancerous tumor, I would call it "Marla." I’d also call my HIV Marla.
Translated by Olga Kuchmagra