I have never known a life without HIV. I was born with it. I grew up with it. I have spent most of my 22 years learning how to carry it in a world that often treats it as something to be ashamed of. And I have spent the last few years making as much noise as I possibly can about what it means to be young and alive and HIV-positive in South Africa today.
On 22 and 23 June, world leaders will gather in New York for the High-Level Meeting on HIV/Aids. They will make promises. They will sign a Political Declaration. They will take photographs. And then they will go home.
What I want to know — what every young person living with HIV should be asking — is whether any of them thought about us when they negotiated the words in the document. Whether our lived experiences were in that room. Whether the commitments they made were shaped by people who know what it means to navigate HIV from the inside.
Because I have seen what happens when they are not. I have seen programmes designed by people who have never had to hide their medication from a partner who might leave them if they knew. I have seen prevention campaigns that talk about HIV like it is something that happens to other people — not to girls like me and not to the young women in my community. I have seen young people turned away from clinics by healthcare workers who looked at them with judgment instead of care. The stigma is not just hurtful. It is a public health crisis. It keeps people from getting tested. It keeps people from starting treatment. It costs lives.
The science that keeps me alive today — antiretroviral therapy — PrEP, now lenacapavir, exists because of decades of investment and advocacy. Global collaboration saved my life. And right now, the collaboration is fracturing. The funding cuts of 2025 were a devastating blow to young people like me and the programmes that kept us safe. DREAMS gave millions of girls access to HIV prevention, to education and to the knowledge that they had options. It was switched off overnight. Those girls are still there. Their vulnerability did not disappear when the funding did.
The HLM must commit to youth-friendly health systems — services where young people are welcomed, not judged. Services that understand that a 22-year-old living with HIV also needs mental health support, not just pills. Services that offer comprehensive sexual and reproductive healthcare without shame or interrogation. And it must commit to funding the youth-led organisations and peer networks that make the services real.
I stood in the UN General Assembly in 2024 and said: no conversation about HIV should take place without us. I meant it then. I mean it now. The world leaders going to New York need to hear from young people before they sign anything. They need to understand that we are not a statistic in their reports. We are the reason the report exists.
End AIDS for my generation. Or we will spend the rest of our lives telling you that you had the chance and you wasted it.
Ibanomonde Ngema is a South African HIV activist and advocate, born with HIV, who has spoken at the UN General Assembly and led advocacy with UNAids on the rights of young people living with HIV.
This is the third of a five-part series on the High-Level Meeting on HIV (HLM)