I am William Carter, chairman of the BEAT-HIV Collaboratory. I am a father of two and grandfather of eight. In Pennsylvania, I was one of the first openly gay men allowed to adopt.
When I was diagnosed 24 years ago, I did not even tell myself that I was positive. I did not take my meds for 10 years, because that would have meant admitting that I had a disease—that I was going to die—that I was going to fail as a father. Mentally, it just wears on you. Mentally, I suffered in silence by myself.
When did you participate?
I completed a trial in September 2021, 15 or 16 months in total. I am glad I did it. This was an interferon study with two antibodies. For me, it was a very positive experience. My ATI lasted 13 months. The ATI was quite liberating for a person who had been taking pills for 24 years. To go from taking all those pills to none, that was the best feeling.
What was it like for you to participate in an HIV cure-related clinical trial?
I was looking to do more, to tear down stereotypes and demystify research and the perception that researchers are just using you as a test dummy. I never felt like that. I had all top-notch doctors who spoke to my doctor and my case manager. It was a win-win situation for me. They were getting labs done every week, every other week. I knew exactly where I was at and if I wanted to stop the study, that was always an option.
What do you wish had happened before the ATI?
Nothing in particular. I wish my medical team would have been a little bit more forward thinking. Researchers and doctors—their dreams allow me to dream.
What happened during the ATI?
During my particular trial, COVID was at its highest rate. I only experienced one side effect during the whole time. I wish I had known that, with the interferon, there was a possibility I would get some extreme chills.
Are you willing to share how you approached partner protections during the ATI?
I wish my partner at the time would have been more engaged, because the door was opened for him to do that. I thought he would want to know why we were abstaining from extreme intimacy. I did not injure him or change his status and it didn’t change my status. I wish it could have gone differently, but it protected me. So, I’m very grateful for the trial.
What do you wish had happened after the ATI?
I didn’t have any problem with the trial. I’m back to my same regimen. I completed the study, but I did not complete the additional ATI extension.
What is your call to action or change?
Researchers need to give people a decent stipend. It’s been the same now for the last 25 years. Don’t cut off my dreams. I want you to keep dreaming, but also treat me fairly, talk with me and not at me.
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