A Day In The Life Of An HIV Positive Activist Who Changes Lives

Yana Panfilova’s mother told her she was HIV positive when she was ten years old. It was difficult for her back then, but now she cannot imagine her life any other way. She has already helped many teenagers understand the disease. For her 20th birthday, she only had one wish: to raise around $600 (16,000 UAH) in two days to help a 15-year-old boy who is also HIV-positive.

Ukraine is suffering from one of the fastest growing HIV epidemics in the world. Posters in Kyiv’s metro stations advertise free HIV tests with slogans such as “Knock out HIV!” Despite these attempts to raise awareness of the condition, there is still a stigma attached to HIV and HIV-positive people in Ukrainian society.

Hromadske went to find out what life with HIV is like for Panfilova, what she is doing to combat HIV discrimination in Ukraine and whether or not her birthday wish came true.

“We need to teach people to donate”

We meet with Panfilova in a cafe in Kyiv’s trendy Podil neighborhood. She sits on a bench with her laptop on her knees, typing away intensely.

“Tomorrow begins my second decade, 20 years old. I love gifts, especially unexpected ones. This year I don’t expect any surprises, however, I hope to receive a gift for the soul. That’s if it exists, of course. Together, let’s collect 16,000 UAH by the end of tomorrow for Mark and his parents,” the text on the screen reads.

Panfilova says she has all she needs, therefore she doesn’t need any presents.

“In Kryvyi Rih there is a boy, he is now 15 years old, he is also living with HIV. I can’t mention his name, his parents are against it. HIV positive people in our country still face discrimination. So let’s call him Mark. Mark had a brain hemorrhage when he was a child, he had epileptic fits. He contracted HIV during one of the many blood transfusions. He wasn’t even ten at the time. He is undergoing antiretroviral therapy, which stops the virus from developing. His medical card reads: Cerebral palsy and developmental issues,” Panfilova wrote on the Ukrainian Philanthropic Marketplace website, which she is using to fundraise.

“How much you give is not important. The main thing is that my friends show some sign that they are respecting my wishes. It seems to me that we need to generally teach people how to donate. Maybe I’m being selfish, but when you know that you’ve helped someone, you feel like you’re not living your life in vain. Psychologists say that, when you help someone, you also help yourself. It’s like your self-esteem grows…” Panfilova says, adding that, “For example, when people you wouldn’t expect to donate give money, it’s very nice. It’s a closeness that promotes trust in people.”   

Panfilova is scrolling through news on Facebook when she shouts, “Hooray! They’ve approved the medical reform!” She has been following the broadcast from parliament since this morning.

“Discrimination begins at school”

On the way to the office, she tells us how she created the organization Teenergizer, which consults with and helps teenagers with HIV.

“When I found out about my [HIV] status, it was important for me to see things in my own way. So this place came about, where not only HIV positive people, but ordinary people, gathered. We talked about personal development together.”

On the walls of the office where she and her friends work there are photos from conferences, training sessions and demonstrations outside parliament. Over the past year, they have come out in support of the continuation of the medical reform process and taken part in human rights protests.

“When I was a child, I had constant tests for three months. I thought that this was really cool, I went to kindergarten and told everyone: see, I’m not crying, everything is fine, and I’m having tests. My grandmother told me to keep quiet about it. She and my mom were preparing me to have to keep it a secret,” Panfilova says, whilst updating her Ukrainian Philanthropic Marketplace page.

She says that she first heard about the condition from her mother, while in the kitchen. She was very scared.

“Everyone around me knew that people die from AIDS. That’s when I started to cry, it was very frightening. I wasn’t ready to die. But my mom told me about how it is transmitted, how HIV is different from AIDS, that there were drugs for it and I would be taking them soon,” Panfilova recalls.

At first, Panfilova was afraid to tell her friends about it, but when she was 16, she decided to open up about it by writing a post on social media. Her friends accepted it more calmly than she was expecting.

“At some point I realized that I was too concerned with the reaction, I was convinced that HIV was some sort of problem. I didn’t want to treat myself that way anymore,” she says.

Discussing school, she was immediately reminded of the issue of discrimination. In her opinion, discrimination starts in school, where the students believe their teachers more than they do their own classmates. She recounts an incident when her biology teacher, while discussing HIV and AIDS, said: “I hope you never meet such people.”

“I wanted to go up to her, grab her hand and say: Hello, I’m HIV positive, what you fear is standing right in front of you. I didn’t do it because I was scared. I bottled this up and moved on with my life,” Panfilova says.

Her Special Birthday Present

It’s the morning of her birthday. Panfilova runs to her room, dries her hair and responds to her messages online. A book about Steve Jobs sits on the table, on the shelf next her a bed lies another one about Elton John and she has a picture of Russian rock star Zemfira on her wall. Hidden away in a box in her drawer is her monthly supply of pills, which she receives for free from the state.

On her way to the Ministry of Healthcare, where Panfilova has been invited to a meeting about HIV and AIDS, the alarm on her phone goes off. It’s precisely 10 a.m.

“Pills. But I’m not going to take them. Why should I? I’m only joking,” Panfilova laughs and swallows a big blue pill with her coffee. She takes her medication three times a day.

“I once decided to experiment and not have any treatment,” she recalls. “Of course I didn’t tell anyone, I was afraid. It was hard after a while. When the alarm went off, I knew I had to take my pill, I was tormented by my conscience. This went on for almost two weeks. As a result my viral load rose and I had to change medications. It was at that moment that I chose life…”

When we get to the subway, Panfilova jokes: “Do you want me to go up to a police officer and tell them I have HIV? Or tell someone on the metro?” She seems to be testing society, testing their understanding.

“It might sound crazy, but I’m glad I’m HIV positive,” she says. “Without this virus I wouldn’t be how I am now. If I did not have HIV, I would not fully understand people with disabilities, I wouldn’t pay any attention to it. I want to help people…”

As soon as Panfilova enters the office, she hears a loud “Happy Birthday!” She sees her friends and her mother, who are holding a cake. She’s very happy, but she doesn’t really know how to react to all the attention. She blows out the candles, her friend gives her a bouquet of yellow roses and she sits on a chair. She doesn’t show any emotion. She listens to all her birthday greetings quietly. She finally asks: “Did you all donate money to Mark?”

By 6 p.m. that evening the donations have reached her desired total. She sends a message: “If only you could see me right now!”

This is the best birthday present she has ever received.

/By Oleksandra Chernova

/Translated and adapted by Sofia Fedeczko