This is my 25th anniversary of living a healthy life with HIV. As a global representative for John Hopkins University’s AIDS Clinical Trials Group (ACTG) Community Advisory Board (CAB), how could I be on a CAB for clinical trials and not be in a clinical trial? I wanted to experience that.
When did you participate in this ATI trial?
It was December 2016. The trial tested a monoclonal antibody in place of your regular HIV medication. They gave you an infusion for a number of weeks. After the 30th week, they stopped to see how long you could go without needing meds.
They monitored you closely, and every two weeks took blood work, making sure that your viral load was not going up. If the results were good, you would start another phase of the study. But it did not go that way for me, and my viral load started going up high. They wanted to stop the ATI sooner, but I said, ‘No, let’s give it a little bit more time.’ They worked with me, and we continued for another two weeks. It went up some more, and then they said, ‘No, Gail, let’s get you back on medication.’ The doctors were very careful with me. For my first time doing this, I just thought it was an amazing experience.
What was it like for you to participate?
All I knew about the history of clinical trials, coming from Baltimore, was the Henrietta Lacks experience, and the Tuskegee experiments. So, I was leery, but I wanted that experience so I could go back to my community and tell them about my experience.
From the first day of going to NIH, the whole team that I met with, the same people each time, was amazing. They made me feel comfortable, and they welcomed me by name. The whole situation was just so comfortable. I looked forward to going, it was someplace special.
And how they would follow through, how consistent they were. They let me know when something was off, especially when it came to when I had to stop the ATI. I really liked that, and my doctor stayed a part of it with me too, to make sure that I was comfortable.
What do you wish had happened before the ATI?
I can honestly say that this was such an amazing experience because they went over everything before I even went into NIH. Before anything was started, they always asked me if I had questions, any concerns, especially for someone who did not know anything. They handled everything beautifully. They always made sure I understood everything that was happening.
What do you wish had happened during the ATI?
The only thing that bothered me was the weight gain from the medication. I hate gaining weight, but it did not stop me for wanting to do another clinical trial.
Are you willing to share how you approached partner protections during the ATI?
I am a single mom and was not dating anybody, so I did not have to worry about how not being on medication would affect my partner because I did not have a partner at the time.
What do you wish had happened after the ATI?
I wish the follow-up after the study would have been better, because once I left the study, I did not hear anything until maybe two years later when they had the study write-up. There was no follow up with how you are, to see if my viral load came back up, or anything. If they had contacted me, that would have made me feel like I was a valued person and not just another check for a research participant.
My doctor was right on it and my follow up with him was great. He kept checking my blood work and made sure that everything was okay.
What is your call to action or change?
I would like to highlight the importance of primary care physicians and HIV specialists in the research process. My HIV clinician knows me and knows my body. I reviewed the protocol with him and kept him informed on my progress throughout the study. He agreed to answer any questions I might have at any time. The relationship and support gave me the confidence that I could participate in the ATI safely. I recommend that future participants involve their primary care physician or HIV specialist and their care teams. The research team should not be a replacement for the regular health care team during the study.
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