Yana Panfilova, founder and head of the Teenergizer social movement for adolescents, spoke at the opening ceremony of the special session of the UN General Assembly on HIV and AIDS. We give her speech in full:
My name is Yana.I am from Ukraine, I am 23 years old, I was born with HIV.
I believe everyone is born free. But bad laws and social stigma label us. I have been stigmatized as a person living with HIV. Society has decided how it perceives me, and I will live or die.
When I was 10 years old, I already had AIDS. I started taking pills every day and they saved my life. Today, this little magic pill saves the lives of 27 million people living with HIV around the world. This little pill gives us hope.
Knowing that we can win the war against this virus. Knowing that with treatment you become equal to yourself. You don’t have to live in fear of transmitting HIV to your partner. Knowing that you can have healthy babies born without HIV and be alive to see them grow up.
But this is not a reality for the millions of people living with HIV who still live in constant fear and isolation.
When I found out about my HIV status, I still had many questions:
- Why is my mom keeping my HIV status a secret?
- Will I live a normal life like everyone else without HIV?
- Do I have to take this pill forever?
When I grew up, the answers were stingy. My teacher told my class not to talk to people with HIV. My neighbor was angry because she hadn’t known for years that I had HIV. I realized that my HIV status was a dark secret for everyone else in my life, but not for me.
The doctors did not talk to ME about MY health because of the parental consent law. They only spoke to my mom. This is why I found my own answers by asking Dr. Google.
Then I turned 16 and my questions changed:
- What if I meet someone cute? Should I tell them I have HIV?
- Can I have sex? If I do, will I transmit HIV?
- Should you spend your pocket money on a condom or a bottle of beer?
- What happens if I stop taking this pill?
I realized that millions of other teenagers were in the same situation. We created Teenergizer, the first peer support group for adolescents with HIV in Eastern Europe and Central Asia.
We went out to the streets and conference rooms to change laws and policies. We have fought for the privacy of adolescent patients from their doctors. We have fought for sexual and reproductive health and rights, as well as comprehensive sexuality education. We fought to be heard, because without us there is nothing.
But we didn’t have the money and experience to make this happen. They told us that we are just children and that the decisions about our life, our health and our future are made by adults.
We are more than our HIV status. We have an amazing skill set. We need HIV services, mental health and social support services, regardless of who we are and who we love.
This year I was angry when we lost Diana. She was only 19 years old and was born with HIV. But she had pills that couldn’t be taken, no mental health support, and no privacy.
What if Diana was born in New York? She would have got the best HIV treatment she could get once a month with a jab. In the clinic, where she would be treated like a person, and not just a diagnosis. She could travel, work or study anywhere because her HIV status would not be an obstacle to a happy life.
This is a reality for some people living with HIV, but not for Diana. Like millions of people living with HIV, inequality killed her. Millions of people with HIV can take HIV pills, but they live in a world where their families and their communities do not accept them for who they are.
I am here today as the voice of 38 million people living with HIV. For some of us, these pills are life-sustaining. But we are dying from a pandemic of stigma, discrimination and the lack of TRIPS flexibility.
President Biden, you can change our future. Just like you did with COVID-19, you can make the health technologies, cutting edge treatments and vaccines here in the United States available to everyone, everywhere.
The AIDS response is still leaving millions behind. LGBTIQ people, sex workers, people who use drugs, migrants and prisoners, teenagers, young people, women and children who also deserve an ordinary life, with the same rights and dignity enjoyed by most people in this hall.
I don’t know what a normal life looks like, but it should not end like Diana’s.
During the COVID pandemic, the world has changed so quickly.Millions of people lost their jobs, families have been destroyed, and young people are feeling stress, depression and anxiety, and are using more drugs and having risker sex. Violence, inequalities, and radicalism are increasing.Why can’t we use this moment to build a better and more just world?
To achieve the end of AIDS by 2030, we need urgent attention and resources for the people who are the most affected, like those across Eastern Europe and Central Asia.
Can we end AIDS by 2030? Yes, but only if we make some radical changes. Which brings me to my final question.
This meeting will make bold new commitments. But honestly, if we are going to make real change, these four things must become a reality:
One: Comprehensive sexuality education in all schools, in all countries.
Two: Psycho-social support and peer support for every adolescent with HIV and young key populations.
Three: community-led HIV services immediately as the reality, not the exception.
And four: we finally get an HIV vaccine and a functional cure.
I am not dreaming of waking up in a fantasy world, free of stigma and discrimination. I am ready to work every day with all of you to make these things a reality.
And like me, there are over a billion young people who are ready to take the lead.But we can’t do this alone. And we are demanding that you step up and finally do your part.