First hand: Moving from fear to understanding HIV treatment

For many young people, the first thing they learn about HIV is not how it works. It is fear. Fear of testing. Fear of what people will say. Fear of what life might look like after a diagnosis. Fear of what people will think.  For a long time, HIV was spoken about in ways that made it feel like an ending. Something final. Something to hide.

Levi grew up with that understanding. “I think my earliest understanding of HIV was shaped by fear and silence,” he says. “Many people believed a diagnosis meant the end of life.” Today, he works with young people across Kenya as an HIV advocate. His work includes helping young people move from that fear to understanding.

When things start to make sense

For Levi, that shift did not happen all at once. It came in stages and with learning. Learning what treatment does. Understanding viral suppression. Hearing about U=U. Knowing that when someone is on treatment and undetectable, they cannot pass on HIV through sex.

“That changed everything,” he says. It shifted how he saw HIV. Not as something that ends life, but something that can be managed. That shift, from fear to knowledge, is one many young people are still trying to make.

In his work, Levi sees that fear is not just about the virus itself. It is about what comes with it. “Many young people think testing positive will change how people see them,” he says. There are fears about starting treatment. About side effects. About taking medication every day. About being judged by family, partners or even health workers. For some, that fear is enough to delay testing. Or to avoid treatment altogether.

Beyond knowing your status

For Levi, treatment literacy is not just about testing. It is about understanding. “It’s not just knowing your status,” he says. “It’s understanding how treatment works, why adherence matters, what viral suppression means.” That understanding changes how young people see their health. It gives them something they did not have before. Control.

One thing Levi has seen clearly is that young people do not always trust information when it feels distant. But they listen to people like them. “When young people hear from someone living with HIV, it becomes real,” he says. Peer conversations make information feel closer. More honest. Less clinical. Safe spaces also matter. Spaces where questions can be asked without judgment. These spaces can be healthcare centres or even people. That is where confusion starts to shift.

Even with knowledge, staying on treatment is not always straightforward. Disclosure is one of the biggest challenges. “Many young people fear someone discovering their status,” Levi says. Daily life also plays a role. Travel. School. Changing routines. Moments where taking medication becomes difficult to manage. Then there is mental health, stigma, lack of support and the feeling of doing it alone. These are the things that shape whether someone stays on treatment or not.

Changing how information reaches young people

Levi believes young people themselves are part of the solution. “They translate medical information into real-life conversations,” he says. They take complex ideas and make them easier to understand. More relatable. More usable. But he also believes something needs to change. “We are still using old approaches for young people today,” he says. For him, HIV information should reflect how young people actually live - through digital spaces, social media and everyday conversations. “Information should feel relatable, honest and stigma-free.”

Looking ahead, there is progress. Information is more accessible. Treatment is available. Conversations are more open than before. And young people are stepping into leadership. Leadership that’s not always in formal ways, but in how they speak, share and support each other. “Young people today are more empowered,” Levi says.

A message to young people

For anyone who feels afraid to test or start treatment, Levi keeps it simple. “You are not alone,” he says. “HIV is just a tiny virus. Don’t give it power over your life.” Treatment works. People living with HIV can live long, healthy lives. And knowing your status is not the end of something. It is the beginning of taking control. “Information is power,” he says. “And your health should come first.”