When we think of Pride, our minds go to bright colors, music, and celebration – and rightfully so. But we also must acknowledge our history of resilience, activism, and lives forever changed by the HIV/AIDS epidemic. This year marks 45 years since the first reported cases of AIDS, a milestone that serves as both a testament to extraordinary scientific progress as well as a reminder that the work is far from finished. While HIV is no longer the death sentence it once was, stigma, misinformation, and inequitable access to care continue to impact the lives of millions around the world.
Few people understand the intersection of progress and persistence better than Karl Schmid. A journalist, advocate, and founder of Plus Life Media, Schmid has spent years using his own lived experience to challenge misconceptions about HIV and amplify the voices of those living with it. In our convo, Schmid reflects on coming out as HIV-positive, why society still struggles to talk openly about stigma, the life-changing impact of U=U, and why honoring the past is about making sure the future arrives for everyone.
This Pride Month marks 45 years since the beginning of the AIDS epidemic. What emotions come up for you when you reflect on this milestone?
It’s a mixed bag, really. On one hand, I feel incredibly grateful and proud. The progress we’ve made over the last 45 years is nothing short of remarkable. Thanks to extraordinary advances in science and medicine, I can expect to live a long, healthy life so long as I remain undetectable, which also means I can’t transmit HIV to a sexual partner. The fact that HIV has gone from being a death sentence to a manageable chronic condition within my lifetime is extraordinary, and something I never take for granted.
On the other hand, sadness, anxiety, and even anger bubble up too. We’re 45 years into this epidemic, and we still don’t have a cure. We still don’t have equitable access to prevention, treatment, and care for everyone who needs it. And we’re living through a moment where some of the hard-fought gains we’ve made are not only being threatened, but in some cases actively rolled back.
What’s particularly frustrating is the growing perception that HIV is “solved” and no longer requires the same level of attention, investment, or urgency. The reality is that millions of people around the world still depend on ongoing research, access to treatment, and support services. Those aren’t luxuries. They’re lifelines.
So when I reflect on this milestone, I feel proud of how far we’ve come, grateful for the people who got us here, and determined not to take any of that progress for granted.
For younger LGBTQ+ folks who did not live through the early days of the epidemic, what is most important for them to know and understand about that time in history?
That HIV didn’t become one of the deadliest epidemics in modern history simply because of a virus. It became what it was because of stigma, discrimination, political inaction, and the belief by many that the people most affected weren’t worth fighting for.
Millions of people died, and for far too long, those in positions of power failed to respond with the urgency the crisis demanded. There was a sense among many that because HIV was primarily affecting gay men, people who used drugs, and other marginalized communities, it wasn’t really their problem. That’s the lesson I hope younger people understand.
The progress we’ve made didn’t happen automatically. It happened because people organized, protested, advocated, cared for one another, and demanded better. Every breakthrough in treatment, every advancement in prevention, every right we’ve secured came from people refusing to accept the status quo. I get angry when I hear people say, “HIV isn’t really something we need to think about anymore.” We are incredibly fortunate to have effective treatment and prevention tools today, but complacency is dangerous. The moment we stop paying attention, stop advocating, or assume the work is done, we risk losing ground.
History shows us what can happen when society decides a problem only belongs to someone else. That’s a lesson that extends far beyond HIV.
What was the response like after you came out as HIV-positive, personally, professionally, or otherwise?
I was incredibly fortunate to have an amazingly supportive family. My parents, my brothers, my extended family, and my close circle of friends were all loving and supportive from day one. Their first concern was simply making sure I was OK. I realize what a position of privilege I sit in to be able to say that.
Professionally, it was a very different story. I kept my HIV status private for 10 years because I was afraid. I was afraid it would affect my career, my ability to work in television, and ultimately the goals and dreams I had for myself. That fear wasn’t based on science. It was based on stigma.
When I finally did speak publicly about living with HIV, the response from my professional circles was, for the most part, incredibly positive. But who’s to say what conversations happened behind closed doors that I wasn’t privy to? Who knows what speaking publicly about my HIV status meant for opportunities that may have come my way but were perhaps reconsidered because of how it might make an organization look? We’ll never know.
What I do know is that holding that secret for so long did more damage to me than the possibility of losing out on jobs or opportunities ever did. The internalized stigma I carried around was heavy. It affected how I saw myself, how I valued myself, and what I believed I was capable of. Even today, that’s something I continue to work on. HIV is a virus. The stigma surrounding it is often much harder to overcome.
Through your work with Plus Life Media, you’ve focused on education and combatting stigma. What conversations about HIV do you think society is still avoiding?
Honestly, I think society is still avoiding conversations about people living with HIV. We’re fairly comfortable talking about HIV in abstract terms. We’ll talk about statistics, research, prevention, treatment, and public health outcomes. Those conversations are important. But we’re often far less comfortable talking about the lived experience of someone who has HIV.
We’re still not having enough honest conversations about stigma. About what it feels like to disclose your status to a potential partner. About the fear some people feel when they’re first diagnosed. About the mental health challenges that can come with carrying stigma for years or even decades. About the fact that many people living with HIV continue to face judgment, including within the LGBTQ+ community itself.
I also think we’re avoiding the conversation that HIV is not over. The headlines have moved on, and because treatment and prevention have improved so dramatically, many people assume the crisis has been solved. But millions of people around the world are still living with HIV, millions more remain vulnerable to acquiring it, and access to prevention, treatment, and care remains wildly unequal depending on where you live.
Ultimately, I think we’re still avoiding the most important conversation of all: how we treat people living with HIV. Science has done its job. We know HIV cannot be sexually transmitted by someone who is undetectable. We know people living with HIV can live long, healthy lives. The question now is whether society is willing to catch up to the science.
HIV treatment and prevention have advanced exponentially over the past few decades. What developments give you the most hope?
The recent approval of Yeztugo from Gilead Sciences is a phenomenal breakthrough. Study after study has shown just how effective it is at preventing HIV through sexual transmission, and the idea that someone can receive just two injections a year for HIV prevention is pretty remarkable when you stop and think about it.
I also know that the amazing folks at Gilead are working with Merck on a potential once-weekly HIV treatment pill. As someone living with HIV, that’s the kind of innovation that gets me excited. Anything that makes prevention and treatment easier and more accessible for people is a good thing.
Beyond specific medications, what gives me hope is knowing there are people and organizations out there dedicating their lives to finding a cure and improving the lives of people living with HIV. They’re not giving up, and they’re not walking away from this work just because funding is being threatened or public trust in science is under attack.
Seeing thousands of young activists show up at AIDS Walks, speak out against cuts to HIV programs, advocate for LGBTQ+ rights, and get involved in their communities gives me enormous hope too. The science gives me hope. The people refusing to stop pushing it forward give me hope, too.
The concept of U=U (Undetectable = Untransmittable) has been major for many people living with HIV. How has that message impacted folks, and why is it still not universally understood?
U=U is one of the most important developments in the history of HIV. Not only because of what it means scientifically, but because of what it means emotionally and psychologically for people living with HIV. U=U has given millions of people their lives back. It means that a person living with HIV who is on treatment and maintains an undetectable viral load cannot sexually transmit the virus. That’s extraordinary.
For generations, people living with HIV carried the fear that they might pass the virus on to someone they loved. U=U changed that. It fundamentally changed how many people living with HIV see themselves, their relationships, and their futures.
We’re also continuing to learn more about other areas, including pregnancy and breastfeeding, with growing evidence and guidance from organizations like the World Health Organization helping to further inform those conversations.
The one caveat, of course, is that U=U only works if someone has access to treatment and is able to maintain an undetectable viral load. That’s why ensuring people have access to testing, treatment, and ongoing care remains so important.
As for why it still isn’t universally understood, I think there are two reasons. The first is stigma. HIV has carried so much fear and misinformation for so long that many people simply haven’t caught up with the science. The second is that old messages stick. Many people still think about HIV the way it was talked about in the 1980s and 1990s, not the way we understand it today. The science has evolved dramatically. Public understanding hasn’t always kept pace.
That’s why conversations about U=U remain so important. It’s not just a scientific message. It’s a message of freedom, dignity, and hope for people living with HIV.
How does HIV stigma intersect with other forms of discrimination like homophobia, racism, and social inequality?
HIV stigma rarely exists on its own. More often than not, it piles on top of other forms of discrimination that people are already experiencing. If you’re LGBTQ+, if you’re a person of color, if you’re living in poverty, if you’re dealing with addiction, if you’re undocumented, if you’re trans, those challenges don’t suddenly disappear because HIV enters the picture. In many cases, they become even harder to navigate.
What I’ve seen over and over again is that the people carrying the heaviest load are often asked to carry even more. If you’re already facing discrimination because of your race, your sexuality, your gender identity, your immigration status, or your financial situation, an HIV diagnosis can add another layer of judgment and stigma on top of everything else.
If someone is afraid to seek care because they’re worried about being judged for being gay, or trans, or because of the color of their skin, or because they can’t afford treatment, that’s not just an HIV issue. That’s a much bigger issue.
That’s why some people can access prevention, treatment, and care with relative ease, while others face obstacle after obstacle. It’s not because the science works differently for them. It’s because life is often harder for them before HIV even enters the picture.
That’s why ending HIV isn’t just about better medicine. It’s also about creating a world where people are treated with dignity, respect, and compassion regardless of who they are or where they come from.
You hosted and executive-produced HIV Unwrapped, a project that merged fashion, science, and narrative. Why do you think creative storytelling can be such an effective route for HIV education?
Because facts inform people. Stories move people. Most people aren’t going to remember a statistic, a scientific paper, or a PowerPoint slide. They’re going to remember how someone made them feel. That’s why storytelling is so powerful.
One of the things HIV Unwrapped did and continues to do so beautifully was take science and turn it into something human. Suddenly, you’re not talking about data points or clinical outcomes. You’re talking about real people, real experiences, and real lives.
At the end of the day, HIV isn’t a science story. It’s a human story. Science is how we end HIV. Storytelling is how we get people to care enough to help us do it.
What did you learn from the researchers, advocates, and people living with HIV who participated in that project?
What I learned is that we’re probably not as different as we like to think we are. On paper, a scientist and a fashion design student don’t appear to have much in common. But watching these relationships develop throughout the project was fascinating. Once they started talking, they quickly realized they were both driven by curiosity, creativity, problem-solving, and a desire to make a positive impact.
That was one of the most rewarding parts of HIV Unwrapped for me. Watching people from completely different worlds come together, learn from one another, and create something neither could have created alone. At a time when society often feels divided, it was a powerful reminder that people have far more in common than what separates them. I found that incredibly inspiring and hopeful.
How can LGBTQ+ communities honor the history of HIV/AIDS while also celebrating progress this Pride (and all) season(s)?
By doing both at the same time. I don’t think honoring the history of HIV/AIDS and celebrating progress are mutually exclusive. In fact, I think one makes the other possible. We can celebrate the fact that people living with HIV are living long, healthy lives. We can celebrate advances in treatment and prevention. We can celebrate how far the LGBTQ+ community has come.
But we should also remember that none of it happened by accident. The rights, freedoms, medical breakthroughs, and opportunities many of us enjoy today exist because previous generations fought for them, often at tremendous personal cost. Many of those people aren’t here to celebrate that progress with us.
So enjoy Pride. Celebrate. Have fun. Be loud. Be joyful. But take a moment to learn the history, honor the people who came before us, and recognize that the best way to respect their legacy is to keep moving the work forward.
For somebody reading this interview who may have recently been diagnosed with HIV, what would you most want them to hear this Pride Month?
First of all, it’s OK to be pissed off. It’s OK to cry, scream, yell, throw things, have a tantrum, and ask, “Why me?” I think most of us have done some version of that after getting diagnosed. But here’s the thing. HIV doesn’t care.
At some point, whether it’s a day later, a week later, or a month later, you’ve got to pick yourself up, dust yourself off, and decide what happens next. The good news is that the future you’re probably imagining right now is almost certainly worse than the reality you’re actually facing.
You’re going to be able to live a long, healthy life. You’re going to fall in love. You’re going to have sex. You’re going to travel. You’re going to have a career. You’re going to make plans for the future. You’re going to do all the things you thought you might not get to do when you first heard those words.
And one day you’ll look back and realize that while HIV became part of your story, it never got to write the whole thing. So feel whatever you need to feel. Then get into care, take your meds, learn about U=U, and get on with living your life. Because HIV is a diagnosis. It’s not a character flaw.
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