The difference between knowledge and understanding when it comes to HIV

FIRST PERSON.  COMMENTARY

I’m 26 years old, Black, queer and born and raised in Alabama.

And for most of my life, HIV has looked very different from the version of the epidemic that shaped generations before mine, if it was candidly talked about at all.

I did not grow up watching the death toll climb on the nightly news. I did not experience a time when an HIV diagnosis was widely understood as a death sentence. By the time I was old enough to really understand what HIV was, treatment had transformed what living with the virus could look like. PrEP existed. U=U existed. People living with HIV could live long, healthy, full lives. And that is an incredible victory.

But I think we are also living with an unintended consequence of that progress: a generation that inherited a dramatically different HIV landscape without always inheriting the information necessary to understand it.

GLAAD’s 2026 State of HIV Stigma Study found that Gen Z feels less knowledgeable about HIV than any other generation. Only 31% of Gen Z adults say they feel knowledgeable about HIV.

I wish I could say that finding surprised me, but it doesn’t.

My generation has more information available to us than probably any generation before us. If I want to learn something, I can search Google, TikTok, Instagram, Reddit, YouTube or a podcast before I ever open a textbook or call a doctor.

And now, increasingly, I can ask AI.

I have also spent enough time battling with AI tools over HIV information and information in general to know that access to an answer and access to a good answer are two very different things.

Sometimes the information is technically correct but stripped of the context people need. Sometimes the language is outdated. Sometimes it overgeneralizes. Sometimes you have to push back, clarify, rephrase and keep questioning before you get something that actually reflects the current realities of HIV.

That experience has made one comment from the report stick with me: “Information is everywhere. Understanding is not.”

The GLAAD report describes a media environment where people piece together health information from social media, search engines, podcasts, AI tools and conversations with friends. And that should matter to everyone working in HIV advocacy and public health.

Because telling young people to just educate themselves means very little if we are not thinking seriously about where that education is coming from. And even when we do try to advocate for ourselves, stigma can still show up in places where accurate health information is supposed to live.

I learned that firsthand when I was 19 and tried to get on PrEP.

I was a cisgender woman asking for a medication that I knew existed to protect me. That should have been a simple healthcare conversation.

Instead, I felt judged, looked down on, and there was an underlying question hanging over the interaction: Why would you need this? And underneath that question was another one: What kind of woman does that make you?

That moment has stayed with me in what stigma looked like to me. Sometimes stigma is a law. Sometimes it is a slur. And sometimes it is the look someone gives you when you ask to take control of your own sexual health.

That experience also taught me how narrow our cultural understanding of HIV prevention can be and the people it can affect.

PrEP is still too often talked about as though it belongs to one type of person, one gender or one community. HIV itself is often treated the same way. But viruses do not care about the categories we have built around who we think is “supposed” to be at risk. And when people believe prevention is not meant for them, that misconception can become a healthcare barrier of its own.

That stigma can lead people to delay testing or avoid care altogether. Now, that attitude ultimately didn’t stop me from getting what I needed, but it did cause hesitance as I fully processed the experience I had. This year’s report finds that HIV stigma can affect whether people feel safe seeking healthcare, with those experiences becoming even more pronounced in rural communities and among people with marginalized identities. 

At the same time, HIV itself is becoming less visible to my generation. That can sound like progress, but it comes with some drawbacks. Older generations lived through a period when HIV and AIDS were impossible to ignore. AIDS activism forced the epidemic into public consciousness because governments, institutions and media outlets often refused to act with the urgency that was necessary. Gen Z came of age in a different reality. But that same distance also created complacency.

If HIV does not show up in your life, your television shows, your favorite podcasts, your social feeds or your conversations with friends, it becomes easy to believe outdated stereotypes and that HIV is something that happened before our time. Or something that happens somewhere else. Or to somebody else.

And I know that those stories do matter. That we should know that history. We should know who we lost, how governments failed people and how queer communities organized when their survival depended on it. But we also need the stories where we have a Black woman living with HIV who is dating. Where is the queer Southerner living with HIV who has a career, a family, friends, goals and bills? Where are the characters whose HIV status matters but is not the most interesting part of the plot? Where is the person living with HIV being funny? Being messy? Falling in love? Getting old? Being sexy? People living with HIV have said they want narratives where HIV is one part of a whole life instead of a permanent crisis storyline. And when people living with HIV disappear from our stories, outdated assumptions get to remain uncontested.

Those assumptions can eventually become something much more dangerous than ignorance and can turn into policy.

So do not tell us that we need better HIV education and then communicate with us like it is 1995.

If we are on TikTok, HIV information needs to be there. If we are listening to podcasts, HIV stories need to be there. If we are asking AI about our health, the people building those tools need to understand that accuracy, context and stigma-free language can have real consequences. If we are watching television, people living with HIV need to exist beyond trauma narratives.

And if a 19-year-old woman walks into a healthcare setting and asks for PrEP, the response should not be suspicion. It should be: “Absolutely. Let’s talk about your options.”

My generation inherited something extraordinary.

We inherited the possibility of a world where HIV does not have to be fatal, where transmission can be prevented, where an undetectable viral load means HIV cannot be sexually transmitted and where people living with HIV can expect long lives.

But medical progress and cultural progress are not the same thing. The science has moved forward, and our understanding has to catch up.

And for Gen Z, that means making sure the quieter HIV epidemic we inherited does not become an invisible one.