Personal Perspective: If At First You Don't Succeed
I was first told about my HIV status in 1985, when I was 30 years old. A few years later I was told that I'd gotten HCV in the same way: IV drug use. In January of 2003, I was arrested and sent to Rikers Island. I was taking methadone, but doing a lot of heroin as well -- 3-4 grams a day. Plus, I was on psychiatric medications.
At Rikers, it seemed to me that the doctors were overworked and underpaid, because the kind of care I was given was poor. They took whatever information I told them without giving me any tests to see if I was telling them the truth or not. I ran into a lot of medical problems there, wound up with PCP pneumonia, and had to go into an isolation unit for intensive care. I was so sick I would just take the pills I was given, not knowing what they were for.
After recovering from the PCP, I was given a regimen for my HIV, but the doctor never explained it to me, so I never took it. Then my methadone was stopped without me being properly detoxed, and my psych meds were also stopped -- somehow the medical staff messed up. I had to call Prisoners' Legal Services for help, and they wrote a letter on my behalf. I also sent a "Notice of Intent" to take legal action, but that didn't help, either -- I still was denied treatment. This went on for about 15 months until I was transferred to the Beacon Correctional Facility, where I finally had an infectious disease doctor look at me.
The medical staff started doing tests and talking about a liver biopsy and HIV treatment, but there wasn't enough time for that at Beacon. I was ready to go upstate, and the medical staff felt it was best for me to wait -- so I waited, for two more months.
Now I'm in the custody of DOCS, at the Altona Correctional Facility, and the treatment situation has gotten a little better, but there are still a lot of loopholes in the way I am treated. For one, a lot of facilities' in-house infirmaries are closed due to cutbacks. And there are confidentiality problems, too. When I first came here I had some problems with a nurse. She was giving me a hard time approving my request for a bottom bunkbed, which I needed because of the neuropathy pain in my feet. So I wrote a letter to the head of Nursing Administration and he took care of the problem, but he showed the letter to a lieutenant who was dating the nurse!
The doctor here then sent me to the Coxsackie Correctional Facility to see an infectious disease specialist. This is where I was finally able to talk to medical staff about a treatment plan. But the medical trip is very uncomfortable. It takes three days just to get there, and I have to stay in isolation at another facility overnight on the way. The first time I went on this trip none of my medications came with me, because the correctional officer didn't tell me that I was going on a medical trip. Once I got there and was able to talk with an HIV doctor, things started to happen for the better. I asked the doctor if it was possible for us to have talks using his video hookup, but at that time my facility didn't offer that. Now it does, and my doctor is able to talk to me about getting all of my other medical problems under control before dealing with the HCV.
When it comes to treatment for HCV, there is a whole lot of time involved in even being approved for treatment, especially if you've had any mental problems. First, you have to wait to get into the facility's Residential Substance Abuse Treatment before you can ask for HCV treatment. Next, you have to get approval from Albany to have a liver biopsy, and then you have to go to an outside clinic to get it. Then you have to go back to Coxsackie to see the gastric specialist for the results, and even then you might not get approval.
I had to have two liver biopsies because in the first one the doctor missed my liver completely and just hit muscle! So I had to wait another two months to go back and get another one done. I explained to my doctor what happened the first time, and he said I should go to Albany Medical Center instead, but they just sent me back to the same clinic that did the first biopsy. When I got the second liver biopsy, I told the doctor what had happened the first time, so he went in twice, with two separate needles, to make sure that he had a piece of my liver for testing!
The test came back genotype 1, stage 0 -- no sign of liver damage. I asked the doctor at Coxsackie what that meant, and he just said, "Genotype 1," and that he was going to put in a request to Albany for me to start HCV treatment -- without even explaining it to me. It was like he was trying to force me to take the treatment even though I didn't need it, after all the paperwork the medical staff did.
But thank God for my HIV doctor -- he really explains things to me over the TV hookup, and he told me that I don't need the HCV treatment right now due to the stage that my liver is in. He feels I should have another liver biopsy in two to three years, so if I'm not out by then I would have to go through all this again!
The medical staff here treats me okay, but where I really get help is at my self-help programs, AA and NA. I can let loose of whatever I'm going through with no problem. It's sad not having an HIV support group at this facility. I've tried asking for one, and the response I get is, "We used to have one but nobody showed up, so we stopped it."
I've been here close to 19 months. I took one HIV/HCV peer training run by the AIDS Council of Northeastern New York, five months ago. But now the only HIV support I get is when I call the Osborne Association's AIDS in Prison Project hotline. Other than that, I feel alone. It is very hard to disclose to people who are still in denial about their addiction as well as their high-risk behavior, so I only talk to inmates that are close to me -- and I can count them on one hand.
This article was provided by AIDS Community Research Initiative of America. It is a part of the publication ACRIA Update. Visit ACRIA's website to find out more about their activities, publications and services.