Editor’s Note: This article is a part of the “Journalism of Tolerance” project by the Kyiv Post and its affiliated non-profit organization, the Media Development Foundation. The project covers challenges faced by sexual, ethnic and other minorities in Ukraine, as well as people with physical disabilities and those living in poverty. This project is made possible by the support of the American people through the U.S. Agency for International Development and Internews. Content is independent of the donors.
For 18-year-old Yana Panfilova, the human immunodeficiency virus, or HIV, is not something frightening, mysterious or remote.
It’s part of her life: she was born HIV positive and has known about her condition since the age of 10.
“For teenagers with HIV, the disease is only a small part of their lives,” Panfilova says.
“I’m open about my status because for me it’s just a disease, like diabetes,” she says. “If you take your pills and take care of your health, then it is not a problem.”
Panfilova manages HIV by taking antiretroviral drugs that suppress the HIV infection. In every other respect she is a normal, boisterous, smiling teenager, who studies at university, and loves to travel or just hang out with friends.
But there are many other HIV-positive people in Ukraine who aren’t so open about their status. The country has one of the worst rates of new HIV infections in Europe, with the percentage of the adult population that are HIV positive rising from 0.83 percent in 2013 to 0.9 percent in 2015, according to World Health Organization figures. As its name suggests, the virus progressively attacks the human immune system, leaving the body unable to defend itself from other diseases and cancers.
Ignorance and prejudice are allies in the spread of HIV. Panfilova says that many people in Ukraine don’t know how HIV is transmitted, and often don’t know they have been infected until it’s too late, and HIV progresses into full-blown AIDS – when an HIV-infected person starts to fall sick due to the damage to their immune system.
Panfilova says most HIV-positive people in Ukraine are afraid to reveal their status because of common prejudices in society.
“When I was at school, one of my teachers was talking about HIV during a lesson, and after he finished talking, he said that he wouldn’t wish for anyone to meet an HIV-infected person,” she recalls.
Children and teens who otherwise wouldn’t be afraid or negative towards HIV-positive people change their attitudes because of misinformation from society, teachers and parents, Panfilova says.
“A lot of people still think their children can get infected by touching a person who has HIV, or eating from the same dishes, or even just communicating with them – but we know that’s not true,” she says with a sad smile.
Panfilova was just 10 years old when her mother revealed to her that she was HIV positive. She was infected from birth: her mother, a former drug addict, found out she herself was HIV positive only after giving birth to her daughter. But Panfilova says 10 was the perfect age to find out about her status, as a 10-year-old is ready understand the information, but not react as emotionally as a teenager.
“My first question was ‘Am I going to die?’” she recalls. “Like a lot of children, I had no idea what HIV was. But now I can see there are some positive aspects to my condition. I take my health a lot more seriously than most people do. And I also have a lot of true friends whom I can rely on. HIV helped me to meet a lot of wonderful people,” Panfilova says.
But she’s been through some tough times as well.
Because she was a drug addict, Panfilova’s mother was deprived of parental rights and her daughter was raised in an orphanage until she was three.
But after her mother quit drugs, she was able to bring Panfilova back home. The two now work with public organizations that are trying to prevent the spread of HIV by raising people’s awareness about the virus.
Panfilova runs a youth organization called Teenergizer (teenergizer.org), which helps teens with HIV come to terms with their condition. In fact, the organization is not just for people with HIV, but for teenagers in general: the group’s website currently has articles on interesting books, films, relationships, psychology and only one devoted to living with HIV. The organization also helps teenagers get help from psychologists or just link up with someone who will listen to them talk about their problems.
For teenagers with HIV, one of the main problems is that they often refuse to take antiretroviral drugs, or are simply not aware of their condition, Panfilova says. Teenagers who want to take an HIV test anonymously are often not allowed to do so by doctors if they are under 18, although Ukrainian law says teenagers have the right to anonymous testing from the age of 14, Panfilova says.
In addition, doctors frequently fail to explain to teens how important it is to take antiretroviral drugs. Exhausted by society’s prejudices, worried by health issues, and constantly afraid that their peers may find out about their condition, many teens stop taking antiretrovirals, and try to forget about the disease.
Many parents also find it difficult to speak frankly to their children about HIV, because sex is the main route of transmission of the infection. Also, Panfilova says that Ukrainian schools don’t provide adequate sex education, as many teachers who were born in the Soviet Union are too prudish and embarrassed to speak about the topic.
The problem of HIV infection, and the dozens of others that today’s teenagers face, has motivated Panfilova to become heavily involved in social work.
Apart from running teenergizer.org, Panfilova is a member of the UN Youth Advisory Panel in Ukraine, and the youth committee of the East Europe and Central Asia Union of People Living with HIV. She is a member in Ukraine of the youth committtee of UNICEF’s U-Report campaign, which polls youngsters on social issues. Panfilova also visits schools to give talks on HIV and how the virus is spread.
“The discrimination comes from stereotypes,” she says. “The only way to fight those prejudices is to explain to people that those who live with HIV are living among them. It could be a stranger on public transport sitting next to you. HIV is not just somewhere in Africa – it’s right here, and right now.”
