HIV has always been a part of life for Yelyzaveta ‘Lisa’ Shevchuk, aged 19; Egor Pasko, 23; and Yana Panfilova, 26.
All 3 were born with the virus and are part of Teenergizer, a movement that supports the mental health of teenagers, raises awareness about and fights stigma and ignorance surrounding HIV/AIDS, and is active in Ukraine, Kazakhstan, Kyrgyzstan and Tajikistan.
I have faced discrimination
Even as a young child in Ukraine, Lisa was aware of stigma relating to her HIV status. “I have faced discrimination and ignorance in my life,” she explains. “I remember how it felt when a man at the grocery store told everyone, ‘She has AIDS, get her away from me!’ My sister and I responded by explaining that this is not how HIV works.”
Lisa is keen to emphasize the importance of ending stigma and ensuring access to treatment, but she is also realistic. “I don’t expect to wake up in a fantasy world, free of discrimination and stigma, but I want to tell people about my HIV status openly and loudly. I want people to know that HIV is no longer dangerous. If you take HIV medicine and achieve, and maintain, an undetectable viral load, you can’t transmit HIV,” Lisa explains.
Wish for compassion and humanity
Having lost his parents to AIDS many years ago, Egor, now serving in the Ukrainian army, is the only surviving member of his family. Like Lisa, he is acutely aware of stigma and remembers friends, lost to AIDS, having stopped lifesaving antiretroviral treatment after meeting with prejudice within the health system.
Thankfully Egor benefited from the support of a caring doctor. “When I was a kid and I first started taking HIV medicine, it was hard,” he says. “I felt weak and dizzy, I couldn’t get out of bed for a week, and I tried to hide the pills from the nurses. Then my favourite doctor told me, ‘You have to take the pills, be patient, and the side-effects will pass.’ She was right and the treatment became easier. Now I take one pill every day, which is quite different from the original 8 pills per day. I was lucky to have a supportive doctor.”
Aware of the impact of the health system on people living with HIV, Egor’s wish for the future is that “doctors and nurses respect confidentiality and treat everyone with compassion and humanity”.
Strain of war and a stigmatized disease
The mental health burden for teenagers living with a long-stigmatized disease is the focus of Yana Panfilova’s work. As the founder of Teenergizer, and living with HIV from birth herself, she is deeply concerned for Ukrainian teenagers facing the mental strain of living through the ongoing war, whether in Ukraine or as refugees, on top of the challenges of living with HIV.
“I fear it will take years, even decades, to recover from these emotional scars. That is the mental health situation for me and for a generation of young Ukrainians,” Yana confides.
“Teenergizer has provided some 50 000 peer-to-peer psychological consultations since the war and we have 250 peer psychologists. My wish for 2024 is that we ensure that young people, especially teenagers, have access to professional mental health services that are strong enough to work in any crisis,” she concludes.
It is high time
“The determination of these 3 young people to banish stigma and provide support to their peers is a stark reminder of the importance of our work at WHO in partnership with health authorities and civil society organizations and advocates,” says Dr Stela Bivol, leader of the unit that covers HIV within the WHO European Region, encompassing 53 countries across Europe and central Asia.
“It is vital that fear of stigma and discrimination do not prevent people from getting tested and accessing treatment,” Dr Bivol continues. “Medically speaking, HIV is a chronic disease like any other; it is high time social attitudes, not least within the health sector itself, catch up with medical reality. Prevention, testing and treatment are the foundation of a public health approach to HIV and AIDS and the focus of much of our work. But unless we eradicate the tremendous stumbling blocks of stigma and discrimination, we will never succeed in ending AIDS once and for all."