Moving beyond uncertainty

I’m a choreographer, performance artist and community activist. I manage a kitchen in North Beach, California, an acrobatic circus and dinner theater. I’m chunky, funky, thick, phat and all that. I also volunteer for nonprofit organizations. I’ve been a participant in clinical trials for HIV cure research since 2014.

I lived as a person with HIV from 2013 until I moved to Los Angeles, where I had to get tested to verify that I’m positive to access care. I tested negative. I had no idea why. Eventually, I moved back to San Francisco and linked up with my old doctors here. That’s the beginning of my journey. Through the SCOPE study at the University of California-San Francisco General Hospital, I’ve been part of a plethora of clinical trials. It all seems like the same trial, the same journey, the same goal of finding a cure for HIV.

My analytical treatment interruption (ATI) took place from July 2021 until January 2023. The study enrolled participants who started medication very early into their HIV seroconversion, to observe when the virus rebounded. The ideal situation was that HIV would rebound, the numbers would climb and then plateau, maybe even peter off into “suppressed remission.” That was the term. A few months at the most, not past a year. I never rebounded. They never anticipated participants in the trial to get cured of HIV.

Treatment interruption was the scariest part of my journey, really scary. I don’t understand all the science. Even worse was how it affected me interacting sexually with others, trying to make sure they were safe, because I was a person with HIV who was not on medication. I can’t recall the last time I’ve met someone in that situation. I tried to explain to guys I met online. Most everyone was confused, so they just decided no. Even when all the barriers were broken down, there was this fear in the back of my mind: What if in the past few days my virus has rebounded? No one wants to have protected sex these days. That’s what made it really scary, the thought of potentially harming someone else.

I would overload people with information, trying to be forthright and super honest. But who on Grindr wants to have to read a PDF document before hooking up? Not that sexy. People got overwhelmed. Not just confused, but overwhelmed. My doctors and nurses helped me simplify. I broke it down to, “Hey, I have HIV, but there’s a caveat. I’m off my meds for a clinical trial for an HIV vaccine.”

I never considered that I could also get super-infected with multiple strains of HIV. Not only was it hard to protect my partners, but protecting myself as well. This was further complicated psychologically by my personal journey as a gay man recovering from meth addiction directly linked to sex. I was trying to have a renaissance with the way I engaged in romance and sex, and treatment interruption was yet another roadblock. That’s why this part of the study was the most terrifying, even beyond getting electroporated for the vaccines. I’d rather do that every week. I’m a pain pig, so bring it on!

If I have a suggestion to the study clinicians, it’s make the participants aware of psychological things they might experience, how it may change their romantic and sexual interaction with partners. Be repetitive. Researchers go over all the physical risks, be very thorough with that. The mental health component has to be considered, too. Someone can describe a situation, and you think you’re prepared for it, and then you enter into it. I was feeling alone and isolated. What could have alleviated that feeling is a support group comprised of other study participants going through the same thing. I experienced similar isolation when I first started clinical trials. I was lucky enough to have been connected to Timothy Ray Brown, the Berlin Patient, by mutual friends. He agreed to meet and gave me much needed support.

I was in the study longer than anticipated. In lots of ways, I was putting my life on hold. I couldn’t be spontaneous. I don’t understand the science, so I thought the longer I’m off meds, the better. The vaccine’s working! Maybe this is the cure that we’ve been searching for! Going back on medication felt like ending the journey, and I’m not a quitter. My doctors said that they’d learned 99% of what they wanted to learn. They just had to keep explaining to me over and over again that they learned almost everything they needed, that I wasn’t giving up or failing by starting HIV meds again. When I heard that I felt like I was released.

As soon as I took that first pill again I felt safe, protected. I do not want to go on another treatment interruption. I might feel differently in the future, but I’m not in a rush to jump back in. I have no idea what’s next. For now, I’m just trying to enjoy being a regular, middle-aged gay man on meds and not really having to think about things. Just enjoy my life.

Shout out to everyone at UCSF on the SCOPE study team. They’ve been there for me, super forthright, honest and caring. I really appreciate that!

Back to Preparing for Success