We had been together 25 years. Together, we had seen the HIV therapeutic landscape change dramatically—from medications that made him sick often, through complications with early protease inhibitors and finally to our nearly normal lives with him taking mostly benign ART once a day.
I was so thankful for the positive changes that had helped make him healthier and happier, our lives easier and more predictable. I was well aware that they were only possible because of the participation of many individuals in clinical studies. And yet, when he told me he was seriously considering taking part in an ATI study, I tried to talk him out of it.
You are doing so well. Why take the chance that the virus cannot again be suppressed after the treatment interruption? What if you get sick again? I read some of the literature. While the approach seemed potentially promising, it did not strike me as any sure thing. There were many unknowns and uncertainties. The time and travel required seemed unreasonable: overnight stays monthly for a year, an initial week-long visit, and periodic treatments that might unpredictably require longer stays. Who can accommodate such a schedule? And, of course, a number of the treatments carried significant risks. Everything considered, I am not at all sure you should do this, I suggested.
My arguments were not successful. In the end, it was his decision, and he decided to go ahead. He did so after considering my views and those of others. He chose to participate for two major reasons: he hoped to help advance HIV cure science. He also wanted to honor those who went before and help improve the lives of those who come after. I greatly respected his decision.
In hindsight our sacrifices were not great. As a long-term committed sero-different couple, a short-term modification of our intimate behavior was not a deal breaker. I had recently retired and had available time. We had no children or others dependent upon us. For other potential participants, the logistics may well be more difficult to manage. After the fact it appears that my partner suffered no apparent ill effects. We also know that the experimental product was proven ineffective. But as a result of the study, clinical research efforts and resources can be directed towards more promising therapies. And we—primarily my partner—played a small but essential role in moving clinical HIV research forward. So, we can feel good about our participation, and feel that the risk was worth the effort and uncertainty.
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