We can win the war against this virus
Yana Panfilova, a young Ukrainian woman openly living with HIV, made a speech on the opening of the UN High-Level Meeting on AIDS
My name is Yana. I am from Ukraine, I’m 23 years old, and I was born with HIV.
I believe everyone is born free. But bad laws and social stigma give us labels. I was branded as a person living with HIV. Society decided how it sees me, and if I will live or die.
When I was 10, I already had AIDS. I started taking a pill every day that saved my life. And today this little magic pill is saving the lives of 27 million people with HIV around the world. This little pill gives us hope.
Knowing we can win the war against this virus. Knowing that with treatment, you equals you. You don’t need to live in fear of passing HIV to your partner. Knowing you can have healthy children, born free of HIV, and be alive to see them grow up.
But this is not a reality for millions of people living with HIV, who still live in constant fear and isolation.
When I learned about my HIV status, I still had lots of questions:
- Why does my mum keep my HIV status secret?
- Will I live a normal life, like everyone else without HIV?
- Do I have to take this pill forever?
As I grew up, the answers were mean. My teacher told my class not to talk to people with HIV. My neighbour was angry because for years she didn't know I had HIV. I realized that my HIV status was a dark secret for everyone else in my life, but not for me.
Doctors would not talk to ME about MY health, because of parental consent laws. They only talked to my mother. That's why I found my own answers by asking Dr. Google.
Then I turned 16 and my questions changed:
- What if I meet someone cute? Do I have to tell them that I have HIV?
- Can I have sex? If I do, will I transmit HIV?
- Should I use the money in my pocket to buy a condom or a bottle of beer?
- What will happen if I stop taking this pill?
I realized that millions of other adolescents were in the same position. We created “Teenergizer”, the first peer support group for adolescents with HIV in Eastern Europe and Central Asia.
We took to the streets and meeting halls to get laws and policies changed. We fought for patient confidentiality for teenagers from their doctors. We fought for sexual and reproductive health and rights and comprehensive sexuality education. We fought to be heard because there is nothing about us, without us.
But we didn’t have the funding and experience to make it happen. They told us that we are only kids, while the decisions about our lives, our health and our future were being made by adults.
We are more than our HIV status. We have an amazing set of skills. We need services for our HIV, mental health and social support, no matter who we are or who we love.
This year I was angry when we lost Diana. She was only 19, born with HIV. But she had pills that were impossible to take, no mental health support, and no confidentiality.
What if Diana had been born in New York? She would have had the best HIV treatment, through an injection she could take once a month. In a clinic that treated her like a young adult, and not just a diagnosis. She could have travelled, worked or studied anywhere, because her HIV status would not be a barrier to living a happy life.
These things are a reality for some people living with HIV, but not for Diana. Like millions of people with HIV, she was killed by inequalities. Millions of people with HIV may have HIV pills, but they live in a world where their families and their societies 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 keeping us alive. But we are dying from the pandemics 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.