Feeling good about being part of the scientific process

I am a retired teacher; I taught first through fourth grade. I also helped children of migrant farmworkers keep up with their classmates in school for 15 years before I retired. That's the career stuff. Then there was not realizing that I was a gay man until I was 36 years old after being married at 23. I have two grown sons, and have been in a loving relationship for almost 10 years.

According to scientists, I am the earliest, most acute person diagnosed with HIV. I had signed up for a pre-exposure prophylaxis (PrEP) trial. When they took my information and enrolled me into the program, my antibody test came back negative, but my viral load came back at a very low number, around 92 copies/mL. Researchers called me and said I had a questionable result. That meant I was on the way to testing HIV-positive, and I started HIV treatment quickly.

My first HIV treatment interruption lasted around six months. My second one was about two months. During the first interruption, I went on a planned trip to Disney World. The research team arranged for me to be able to give blood (for safety tests) during the treatment interruption to make sure that I was safe. I did rebound right after I got back from the trip and could feel my body experiencing flu-like symptoms.

I felt safe and comfortable during my research participation. People were watching out for my best interests. I felt it was my responsibility to humanity and to my community to be as cooperative as possible. How many people have the opportunity to have their bodies teach scientists something that humans don’t know yet? If your body has something to teach humanity, let it.

We did a lymph node removal, a gut biopsy (a few times) and a leukapheresis (removal of blood to collect specific cells) a few times. The researchers were setting the protocols based on my safety more than their desire for the things that they were investigating. I felt their professionalism, restraint and academic caution.

I felt I was fully informed before the start of the treatment interruption. In this last study, the research team organized to have a car sent out. All I had to do was go out my front door, get into the car, and get driven to San Francisco. Researchers did all of the tests and drove me back home.

At the end of the first treatment interruption, I would have felt more comfortable if I had been tested twice a month. In my last treatment interruption, the researchers trusted me to tell them how my body was feeling. They listened to me and made me feel that I was part of the process.

During treatment interruptions, my partner and I simply did not have unprotected sex. We simply used condoms or went oral. I felt my researchers were concerned about me being aware of what was safe, and they were as concerned for my partner’s health as I was concerned for my partner’s health.

I would be willing to participate again in a treatment interruption. It was completely hassle-free. It is meaningful to me that I am still HIV antibody-negative even despite the ATI. My body just simply has not had enough time to make antibodies. If I participate in an intervention study, I will probably have to go HIV antibody-positive to get that whole process to where your body fights off HIV to see if there is a functional cure. Being part of research can be incredibly satisfying. We are just coming out of the COVID-19 pandemic, for which the vaccine was based off research that was done for HIV cure.

There’s the possibility that me suiting up and showing up could have helped countless people. That makes me feel good about being part of the scientific process.

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