I loved reading your special issue on aging and HIV [Spring 2019] since I am now a senior citizen, at 65. So that puts me in a category that could be called “original” long-term survivor, at more than 36 years. The MACS [Multicenter AIDS Cohort Study] took a sample of my blood in 1983 when the study started. In ’85, when the first test for HIV came out, they unfroze my blood and lo and behold, I was positive. But I knew before ’83 that I was positive, because of the large swollen lymph nodes seen in so many men with HTLV-III (isn’t that what it was called it back then?).
In 1982 I received a referral to a highly recommended surgeon to do a biopsy of my big lymph nodes. In presenting his findings, he told me in a rude manner that I had AIDS and needed to go home and get my things in order for the end. Because I was working in a hospital and was not afraid of doctors, I asked him what he found in the tissue he recovered that indicated AIDS, and he had no answer. I said then that there was nothing he could point to that specifically pointed to AIDS. I was then essentially ushered out of the exam room.
I was furious. I sent a letter to the president of the hospital where this doctor practiced. The president answered my letter personally and we actually talked on the phone. We agreed that the doctor would be brought up before the Chief Medical Officer. I agreed that would suffice. Some of my friends at my job wanted me to go further, but I said no more.
So without any clinical proof, I knew I was positive then. And I was really mad to have been treated like trash. Really pissed.
That’s a long story leading to a question: What percentage of all people living with HIV (I still call them “PWA” [people with AIDS]) are 65 years and older?
I’m really on a roll today, after reading “Changing how we age” with HIV [the Guest Editor’s Note by Theo Smart, Spring 2019]. The HIV organization here does a great job for the size of this town, but they have nothing specific for us old farts.
Drug charts in prison
I was diagnosed with HIV in October 2016, four months before being arrested and going to prison. I wasn’t taking it very well. We all know it’s not an easy thing to take in. I’m open about having HIV here in prison, which is not an easy place to be open about it.
Everything that I have learned about HIV was in jail and prison, more so in prison. They had a magazine at my facility called Plus, all about HIV. I found that to be helpful. It showed me that there are things in here that can help me. I now also get POZ and POSITIVELY AWARE magazines.
I took a peer facilitator class about HIV and STDs, which was pretty good. We had to do a presentation at the end of the class. One of the topics we could pick to talk about that stood out brighter than the North Star to me was a personal story. I told the teacher I’ll do treatment because I self carry my medication [some inmates must stand in line to get their therapy]. We had an 8–10 minute window to speak.
As I was speaking I had charts about the medication, what each drug class does. I circled the pills on the chart that I was currently on and showed them my pillbox. Through my presentation I got really into it. I got choked up a bit. I wound up speaking for over 20 minutes, but what got me the most was this one guy who said, “I would like to shake your hand” and he gave me a hug. I just try to show people what HIV is today and what it isn’t. I’m just so happy to have people I can actually talk to about this and get the most current information out there. I’ve come a long way in this short time. I went to jail with a viral load in the millions and a CD4 count at 35. My last lab results showed my viral load is undetectable—U=U—my CD4 count went up from 598 to 774. I’m glad things are going the way they’re going. My medication recently got changed. I’m on a new pill—well, new to me—Symtuza, but my specialist still has me on Tivicay [plus Symtuza] for now. Our plan is to get down to just the Symtuza.
As I’ve told my family and friends, I’m all in on this HIV stuff. I’m from NYC, but there are so many places I can go not only for myself but to help others. HIV has been a big bully for long enough. I, like many others, am here to stand up against it. Silence spreads stigma, speaking silences stigma. That’s what I’m living by, that’s my motto.
Washington Correctional Facility
Comstock, New York
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