March 11, 2013 was like most other days for me, with one significant exception. As I was reaching for my daily HIV meds, I remembered, no HIV meds today, and hopefully never again.
Months earlier, I agreed to participate in a study to see whether a stem cell transplant, which I had undergone to treat cancer, would eliminate HIV. To test this premise, I agreed to stop taking HIV meds. March 11th was the day I stopped.
I was diagnosed with HIV in 1985. My viral load was manageable for years without HIV meds (one of the strategies at that time). In 2003 I was diagnosed with lymphoma, likely caused by HIV. Before undergoing chemotherapy, my HIV had to be brought under better control, so I started taking HIV antiretroviral therapy. The chemotherapy treatment worked, though the lymphoma returned in 2006. I began another round of chemotherapy, followed by a stem cell transplant that used cells from my own body, a more challenging experience and recovery than from chemotherapy.
All went well until 2009 when tests revealed myelodysplastic syndrome—my bone marrow was slowly failing, a consequence of many chemotherapies. With donor cells from my sister, I had a second transplant, and it was successful.
In 2012 my doctor asked if I would talk with a researcher who was conducting an HIV cure study to assess whether the stem cell transplant I had might have also eliminated HIV. I remember having two thoughts as we talked: if what this study is testing proves true, I will no longer have HIV, and, if this is true this could be amazing for others with HIV.
The risks of participating in the study included damage to my long-term health, including the possibility that I might die. My emotions ranged from being elated and hopeful to fears of what could happen. Tim Henrich, the lead researcher, was honest and forthright in answering my questions, never trying to sway my decision. The only promise he gave was that I would help advance cure research.
The study protocol required I stop HIV medications, the only way to test whether any HIV remained in my body. Having experienced HIV-related complications—two bouts of lymphoma—the risk of giving any suppressed HIV the chance to rebound was scary. Big time scary. Research at that time showed the virus usually returned in 8–12 weeks, and treatment interruption had an overall, and sometimes strongly negative, impact on health.
I asked myself what participating in this study could mean for me and for others who have HIV. I talked a lot with my sister and with my closest friends. In late 2012 I agreed to participate. The first step was a thorough investigation of my body to ensure no HIV could be found. I was poked, prodded, stuck with needles, had a spinal tap; no virus was found. When I passed all the study pre-research tests the next step was stopping my HIV meds.
Weekly tests found no detectable virus. As time passed, I started to hope that I might have been cured of HIV. I felt hopeful, and then I felt alone. There was only one person, Timothy Ray Brown, who had been cured. Even with the support of my sister and close friends, this was a surreal time for me. When someone asked, as we all casually do when seeing a friend, how are you feeling? I thought, what do I say?
Test results through the 24th week were the same, no virus. I was now beyond the timeframe of anyone who stopped meds and whose virus hadn’t returned. I tempered my growing hopes of being cured with the reality of this isn’t a done deal yet. Having HIV was enmeshed in who I was, including feeling different from others, and self-doubts and fears of living with a deadly virus.
My hopes of being cured vanished in October 2013. After an emergency room visit because I was felt fluish, I was informed I had tested positive for HIV. I felt sad; very, very sad. I immediately restarted HIV meds, which I continue to this day.
I was deeply disappointed not being cured—disappointed for myself and for others. I also felt I had let Tim Henrich down. He told me I hadn’t, that my participation advanced knowledge about the virus and was already shaping new directions for cure research. No cure... at least not yet.
It’s been ten years since this happened. I still admire and respect those dedicated and wonderful people working valiantly on cure research, and my choice to participate in helping find a cure. To my fellow research participants—thank you.
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