Personal Perspective: Health Care for All?
I found out I had HIV in 1999, the same year I was arrested and sent to Rikers Island. I was already on meds when I went in, but when I was arrested I missed a bunch of doses because you have to go through a process first -- medical screening and all kinds of stuff. So I was denied my meds for two or three days. I told them it was dangerous for me to miss doses, but until I went through the court system, I was not allowed any meds.
There was a lot of ignorance about this disease at that time in Rikers. If guys found out you had HIV, they would isolate you -- they were worried they might catch it. The only guys you could talk to about it were the guys in your support group. But people would find out because they would know which doctor you were going to see -- they can put two and two together. The CO (correctional officer) would say, "Hey, you've got a appointment to see the infectious disease doctor," and guys could figure out what that meant.
Some of the COs were very ignorant. One time they did a search and the CO asked me, "What are you doing with all these meds?" I said, "That's my personal business." He said, "When you're in jail, nothing's personal." So I told him, and then he backed away and scowled, like he was going to catch it.
What was messed up at Rikers was that the medical center didn't have private rooms, just low partitions. So when you talked to your doctor, you knew the guy in the next cubicle could hear everything you said. I knew I had to tell the doctor everything in order to take care of myself, but it was very uncomfortable knowing that someone was listening to every word you said.
I was then transferred to a federal prison in Louisiana because I'm Jamaican and they were starting deportation proceedings. My meds came with me, but when I saw the HIV doctor there, he wrote up a report saying that the treatment I was getting was very unprofessional. And then I started getting resistant to the meds because of missed doses. This was not my fault -- sometimes the pharmacist was just not there. We got our meds every Friday, but on the weekends they had only a skeleton crew, so if you didn't get your meds on Friday, you had to wait until Monday to get a refill. That meant you often had no meds for the whole weekend.
Since the federal prison was a bigger jail, it was easier to keep your HIV status a secret. You had your own room and you were able to speak to the doctor in private. But then I was transferred to a county jail because of a lack of space. I was not allowed to bring my meds, so I had none for two and a half weeks while they ordered them from out of state. When they finally came, a CO gave them to me, not a nurse. I told him I had to take my meds twice a day, but he looked at the bottle and said, "No, you have to take them all right now." I said, "Listen, I've been taking my meds for years and I know how to take them." But I couldn't convince him, so I would act like I took all my meds but palm the evening dose and save it for later. I had to do that every day for two months, until they finally straightened it out.
And then I was transferred to New Jersey, to Passaic County jail -- the worst of the worst. That was the worst thing that ever happened to me in my whole life. I was not allowed to take my meds with me so again I missed doses, for about four days. When I got there, I was seen by a nurse practitioner who told me to pick out my HIV meds from the pictures on a wall chart. I said, "This one, that one, and that one," and she just gave me the meds I picked.
The jail was filthy, with 52 people crammed into each dorm room. And the bathrooms were nasty. We got half a bottle of bleach each day to clean them -- that's all. I was not allowed to keep my meds with me -- we had to line up and go to the doctor to get them. I was taking meds twice a day, but they were giving them to me at 8 am and 4 pm. I said, "No, I can't do it like that. That's too short -- one of the doses is four hours early." I tried to palm the second dose once again, but I was busted and got a reprimand.
Luckily, the legal clinic at NYU took my immigration case, and they were very persistent. They pestered and pestered the warden to change when I got my meds. The warden said, "Mr. B. is not a trained physician -- he can't make decisions about when he should take his meds." Well, they eventually changed it, but guess how! Now I had to get up at 4 in the morning to take my first dose! They do things for the convenience of the COs, because they change shifts at 4. It has nothing to do with the person with HIV.
And there was no confidentiality at all. When you met with the doctor, the door had to be open, and there was a line of other inmates waiting outside. So everyone heard everything you said to the doctor.
When I was released last May, my warden was specifically told I was going to need meds when I left, but I was kicked out the door with no meds, not anything. Luckily, when I was transferred from Louisiana, I had a few doses left over and I had hidden them in my bag. So I had a couple of days' worth of meds to hold me over. That's when I went to Exponents, and they referred me to St. Vincent's Hospital where I got some emergency doses until my ADAP was approved.
People don't know what it's like to have HIV in prison -- most of what they know about prison is what they see on TV. It's not like that at all. A lot of guys have homosexual relationships in prison, but they don't have condoms and they're spreading disease. And many of those guys are going to be released, and they bring it back to their wives and girlfriends. They're coming right back out into society. So they really need to start setting up education and prevention programs.
Having HIV in prison sucks, especially if you're an immigrant who is in for committing a crime. We're at the bottom of the pile. When I was in Louisiana, every time I would go see the doctor, he would ask me when I was leaving. I would say, "Why do you care when I'm leaving? You're supposed to just treat me." They're supposed to treat everyone the same way. We're not supposed to get substandard treatment because we're immigrants. That's one of the biggest problems I see -- the difference in treatment, especially if you're going through deportation proceedings. Their attitude is, "Why spend money on somebody who's going to be kicked out of the country?" But we're still human beings. Under the Constitution, we're entitled to the same treatment as everyone else.
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.