Investing in community so community can invest in your research

I am a 56-year-old ordained minister, mother, activist and health department employee who happens to have been living with HIV since December 12, 1988. Over those years, I have been witness to advances in medical research that have kept me alive. If I could safely participate in a clinical trial that would help find answers to scientific questions about my health, and help the people coming behind me, then my life will have fulfilled its purpose. I want to help others to heal.

My clinical trial involved an analytical treatment interruption that lasted for about six months. It was all smooth sailing, and I had nothing to worry about. Toward the end of the study, my numbers went down a bit, and the researchers put me back on my HIV meds. It was nothing that made me fearful; it was nothing that put my health in jeopardy. They kept an eye on everything, telling me what was going on the whole time. Except for a headache once, I really had no issues, nothing that put me in danger, made me fearful or made me regret anything about the study.

The researchers thoroughly explained everything to me, I did not feel like I was at these appointments alone.

The study doctors and nurses came in and explained to me what was happening. The staff was on point. It was a wonderful experience because I felt like I had family taking care of me.

When I went back on my HIV medications, everything returned to normal, and my body was fine. The clinicians cared about me and my health beyond the research.

During the treatment interruption, we took steps to protect my partner, who is also living with HIV. We still had sex as we did, until my viral load became detectable. We just laid off, to make sure everything was okay. The clinicians suggested that we abstain, which we did. Before long, I was undetectable again and everything was back to normal.

Overall, everything went well for me. I haven’t been too fearful of HIV. But there are people who may not be as informed or educated. I would have liked, though, to have seen during the trial that there was a therapist or counselor who could stay in contact with participants. Someone who could explain what a slight drop in T cells meant, and that it was not the beginning of something serious. Even when a doctor explains something, sometimes you need someone who can repeat that information in a more comforting way to help you stay calm. For someone who might not be as informed or who hasn’t been living with HIV that long, they may need that extra crutch, just to reassure them.

I also think researchers need to do a better job sharing information with participants after the study. They need to break down the science, so it is better understood by the community. If they do that, they’ll be investing in the community so that community can invest in them again.

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