From Stigma to Strength: The Unstoppable Journey of Yana Panfilova
· Vice
Created in partnership with and funded by ViiV Healthcare.
Yana Panfilova was 10 years old when her mother told her she had been born with HIV. At the time, what little she knew about the virus came from one very famous death.
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“I didn’t know anything about HIV, only that Freddie Mercury died of AIDS,” recalls Panfilova, who grew up in Kyiv, Ukraine. “My initial question was: when would I die?”
‘Don’t tell anybody’: facing stigma
Panfilova’s mother, who was working with teenagers living with HIV, reassured her daughter that with the right medication, she could live a long life.
But her grandmother, who had grown up in the Soviet Union and whose views had been shaped by decades of misinformation, had a very different message: “Don’t tell anybody because everybody will hate you”.
It was one of Panfilova’s first experiences with HIV stigma. It wouldn’t be her last.
Panfilova saw a classmate living with HIV face beatings and calls for her expulsion. When Panfilova confided in her best friend that she had the virus, the girl broke down in tears, afraid she had acquired HIV just from sharing a plate.
Recalling her friend’s reaction: “She was so angry and upset. She was biased because in our schools, nobody provided the right information about HIV and AIDS.”
Driven to change the lives of other young people impacted by HIV, Panfilova is one of The Unstoppables—brilliant minds that are breaking barriers and driving progress in HIV.
Fighting prejudice and championing a new generation
Refusing her grandmother’s advice to stay silent, Panfilova publicly disclosed her HIV status at her first press conference in Moldova when she was just 14 years old. She wanted young people living with HIV to have a voice in conversations that were usually happening without them.
Panfilova came to believe that young people living with HIV were too often treated as passive recipients of services rather than as people with their own experiences, rights and ideas. She wanted them to help design and lead the responses intended to support them.
In 2015, Panfilova established Teenergizer, a youth-led organisation focused on HIV awareness, mental health and the rights of adolescents across Eastern Europe and Central Asia, one of the few regions in the world where HIV rates are rising. Her aim was not simply to provide services to young people, but to create a movement in which young people themselves could become counsellors, advocates and decision-makers.
Across the region, misinformation and stigma continue to affect access to HIV prevention, testing and treatment. Teenergizer works to challenge these barriers while advocating for care that is inclusive, respectful and shaped by the communities who use it.
“In these regions, people still think that if you have HIV, you must be gay or you’re a drug user or sex worker. But if you look at the epidemic, a large proportion of those impacted are actually heterosexual.”
Building an international union of youth activists
What started as a small group of friends in Kyiv has grown into one of the region’s most influential youth-led movements. “We had a lot of energy, a lot of ideas and we knew we couldn’t ask adults to help implement it.”
Teenergizer launched a website for young people to share their stories, then developed a peer-to-peer support network that has reached more than 156,000 young people through online psychological counselling. Working with hundreds of peer counsellors, the organisation offers support from people who understand the everyday realities of adolescence.
“Teenagers don’t always want to hear from doctors in white coats. Sometimes, they want to talk to someone who gets first-date nerves, school bullies, and everything else that comes with being a teenager.”
Today, Teenergizer still holds onto that grassroots approach while pushing for policy changes, including judgement-free, “low-threshold” HIV testing and greater access to mental health support. Panfilova also sees medical innovation as a priority, so that teenagers can have a greater choice of prevention and treatment options tailored to their individual needs and preferences.
Speaking for 38 million people at the United Nations
In 2021, Panfilova opened the United Nations General Assembly High-Level Meeting on HIV/AIDS, speaking on behalf of more than 38 million people living with HIV worldwide at the time. She addressed heads of state, ministers, ambassadors and United Nations leaders.
Her message was a call to confront stigma, discrimination and inequalities in the global HIV response. She urged governments to make medical innovations and life-saving treatments available to people everywhere, and called for comprehensive sexuality education, psychosocial and peer support for adolescents living with HIV, and community-led HIV services.
Her address brought the experiences and priorities of young people and communities living with HIV directly to global decision-makers, reinforcing her belief that the people most affected must help shape the policies and services intended for them.
Continuing her advocacy and studying Global Law
Panfilova also discussed the importance of young people’s mental health with Ukraine’s First Lady, Olena Zelenska.
Following Russia’s invasion of Ukraine in 2022, Panfilova left Kyiv and continued her advocacy from Berlin before settling in the Netherlands. At Tilburg University, she is now in the second year of her Bachelor’s programme in Global Law, examining how law and institutions shape human rights, equality and access to justice.
Her legal studies build on more than a decade of international advocacy and youth-led organising. They offer a new perspective on the questions at the heart of her work: whose voices are heard, how rights are protected and how institutions can be held accountable. As Teenergizer’s founder, Panfilova remains closely connected to the movement she helped build and its belief that young people should shape decisions affecting their lives.
Partnerships have helped Teenergizer continue its work during periods of limited funding. Support from ViiV Healthcare helped make projects such as Share We Care possible, an online HIV information campaign launched during COVID that was viewed more than 5 million times.
It’s a powerful example of how Teenergizer operates beyond borders to break down stigma and address the psychological impact of HIV on the younger generation.
“We can’t ignore mental health,” Panfilova says. “We need it, like oxygen or water.”
Discover more stories from The Unstoppables and learn about how innovation has shaped progress in HIV, or visit ViiV Healthcare to explore their commitment to ending the HIV epidemic.
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