amfAR, The Foundation for AIDS Research

Real World Star Opens Up About Living With HIV

Published Monday, January 28, 2019

When he was on MTV’s The Real World: New Orleans in 2000 and dating a U.S. army captain, Danny Roberts became a face for the movement against the “Don’t Ask, Don’t Tell Policy” that forbade gay people from serving openly in the military. He is now 41 with an adopted 2 ½-year-old girl, working as a digital design recruiter and living in New York City.

In a November 2018 interview with Entertainment Weekly, Danny revealed that he found out he was HIV positive in 2011. amfAR recently spoke with him about what his diagnosis meant to him, and why he chose to go public about it now.

Danny

amfAR: Why did you decide to reveal your HIV status at this time?

Danny Roberts: First, it was a personal thing. I've never been one not to speak up when there is misunderstanding or when there's injustice. But like so many others, I had a lot of growing to do before I was ready to own this. Also I wanted to put it out into the universe. I feel very lucky to have a voice that makes a positive impact, and I consider this the next stage in my life. It's my responsibility to try to help others.

It’s been a long journey since I was diagnosed until I got to where I am now. The first half of it was very dark and lonely. It's probably what many people experience. You're not quite sure where to turn. You're battling demons in your own head. Accepting it is a battle in itself—what it means for your life, the health implications, the nature of your relationships. It's a lot to take on at one time.

But harboring a secret for a long time eats at you. It took me a while but eventually I felt secure enough to be honest about it with everybody.

amfAR: In your interview with Entertainment Weekly, you refer to “misconceptions and bigotry” that you yourself had about HIV and people living with HIV. Can you elaborate?

I think in our culture there's this idea that people who are HIV positive are morally inferior, maybe even deserving to be sick. I had to face the fact that deep down I had some of that latent belief in me, too. I'm thankful that right before my diagnosis I made a couple of new friends who taught me to see things in a different way. But it was being diagnosed myself that began the process of overcoming the script running in my head, which was mostly a superimposed script from society about what it meant to be HIV positive and who gets HIV.

“Like so many others, I had a lot of growing to do before I was ready to own this.”

amfAR: What were your greatest fears when you found out you were HIV positive?

Roberts: At the time I was in a long-term relationship, and I had no idea that I was infected. Of course, my immediate fear was, “Did I transmit it to him? Did he transmit it to me? How did we not know this?” I also worried, “How is this going to change his view of me? Am I tainted now? Am I worthy of his love?” But thankfully he was never infected. That definitely became a dynamic in our relationship and he was supportive in his own ways. I was also concerned about how this would affect the future of our relationship and/or relationships with others.

My other fear was of being forever a slave to the American insurance industry. As someone who already had genetic pre-existing conditions, I’d experienced the nightmare of battling with insurance companies to get proper healthcare. So knowing that your life now hangs in that balance is terrifying.

There was a period even after the Obama rules concerning pre-existing conditions kicked in when the insurance companies were all secretly trying to kick us off their policies. They were basically trying to make the drug co-pays so high that you would want to get off. They were caught doing it right away, but that's an example of the perpetual game that you play with a system that's about profit, not your health.

So that's a fear that will never go away. Look at the era we're in now where just around every corner is the threat that people with pre-existing conditions will be placed in a special pool again and good luck to you all. It's really horrifying. Without insurance it's easily three thousand dollars a month for the drugs alone—and that doesn’t even include care.

Danny Close UpamfAR: What was most helpful to you in getting through the difficult period after you were diagnosed?

Roberts: I found it was incredibly important to start confiding in close friends I really trusted. Later I shared it with my boss at work. Your health is always in a more delicate balance when you’re positive, even when you're undetectable like me, and you need to closely manage stress to protect your health. So I felt it really important to tell my boss and build that relationship and trust. She gave me an amazing response, which built up my confidence. I think a lot of people don't go there out of fear.

I've also experienced poor reactions from other employers but I see it as a teachable moment. It doesn't surprise me that a lot of employers don't know how to react when they find this out. It's not necessarily common for a lot of people to hear.

When you tell anyone you're positive nowadays, you get one of three reactions. One is “Oh, my God, are you going to be dead soon? What's going to happen?” That reaction is sort of stuck in the past. The next reaction—which is the newest—is “No big deal. You just pop a pill and you carry on.” And then there's the third that's just kind of clueless. But none of those are healthy or correct viewpoints. So you’re almost always in a situation where you're educating the person you’re speaking with.

In a way this experience has become a second coming out—the same process, the same psychological ride. There is a lot of irony in being known as somebody who many years ago came out publicly as gay, and then much later to be struggling with revealing this.

“Most people probably do know somebody who's positive—they’re just not aware of it.”

And even though medicine has progressed so much that this is now a manageable chronic illness, the stigma that still clings to it is from like 1995. So few comprehend the meaning of “undetectable.” Even in the gay community, it seems the stigma attached even to people who are undetectable is the same as it’s always been toward everyone who is HIV positive.

amfAR: How have your attitudes toward people living with HIV changed since your diagnosis?

Roberts: By 180 degrees. I completely grasp that this is a modern chronic illness and I understand its epidemiology and origins. I look at it in a very scientific way. It's another disease that is very efficient at moving through the human population. At the end of the day HIV attacks everyone—it doesn’t care who. If more people were honest about their status then a lot of others would realize it does touch their life. Most people probably do know somebody who's positive—they’re just not aware of it.

amfAR: What are your hopes for the future, either personal or regarding a possible HIV cure?

Roberts: I'm very hopeful that in our lifetime there really will be a cure on the horizon. I have a lot of friends who are doctors in the field. So I believe we're going to see it and it's going to be hugely impactful globally. Even if it's not a complete cure, there are so many prospects for major improvements in treatment, delivery, and cost.

My other hope is that the current state of for-profit healthcare implodes and we come up with a better, more equitable system that is truly about healthcare. That's actually my hope more than anything because it's not just about HIV patients. It's about everyone who's sick and people who are battling all sorts of chronic illnesses.