How did you finally manage to get off drugs?
I had tried treatments several times, and going to treatment [finally worked].
Which treatments did you try?
I tried Haymarket Center. I went in there the first time, and I did a 28-day program. When I came out, they advised me that I needed long-term support. I didn't believe them. I said: I'll just go to meetings, I'll be all right. That lasted about a week.
The second time, I couldn't stand it. In the middle of the night, I walked about 10 miles home, because I didn't have any carfare, and got high that night.
The last time I went to Haymarket Center, I didn't go in because I wanted to get sober. I went in there because I owed a huge drug dealer on the South Side of Chicago a lot of money. He knew where I lived, and I had to get off the street. That's how I ended up back in treatment. While in there, I decided, well, as long as I'm here, let me try to make something of it. I started applying some of the principles that I learned in there, and tried to make application of them. That was a key for me.
When I got out, instead of staying in my old neighborhood, I went into a supported living program called AIDS Care. With the extra support -- not only peer support, but staff support -- I started branching out at Test Positive Aware Network and other agencies. I had to go to support groups and 12-step meetings, and I got a sponsor. I started getting involved in some HIV advocacy work, and slowly but surely, my self-esteem started coming back up. That's how I got sober. That was about five years ago.
Tell me about the housing. You didn't have money. How did you find out about a place that would house you and pay for all this?
When I got out of the treatment --
The treatment was free, right?
Yes, that was free. They had a specific funding source with HIV. But when I got out, I knew I had to keep busy, because I wasn't working. I couldn't go back to my job to support my habit -- which was delivering pizza. I was making about $100 a day. I could not risk going back there because, although I could make some money, there was just too much temptation. The whole scene -- I wouldn't have lasted.
So I tried to fill up my time. I started looking for services for people with HIV, and I found out about these massages that they were offering on the North Side. I never thought I wanted to live in a supportive environment. But I went there. It was a beautiful place on North Lake Shore, right off the lake. It's a mansion, as a matter of fact. There were a lot of nice people there. I started going there every day, for massages. Anything they'd offer in the community, I would go for. I happened to be there four or five days a week. That kept me sober.
Were all these free services?
That was all free at the time. Now, you can't get anything. So much has been cut, as far as funding. You'd be hard pressed to find that kind of service today. I came in on the tail end of it, when things were kind of good. I looked at the place and I applied for it. It took a while to get in, but I finally got in. I moved in, shared a room with another person who was a nice person. I got a chance to stabilize myself, to sit still for a while, and to start working on the spiritual side of me. I also tried to start getting involved in different HIV advocacy work.
How long did you live there?
I lived there for about two years -- almost two years. Then I applied for Chicago House, where I work now.
What is Chicago House?
Chicago House is an agency that typically supplies housing, case management and substance abuse counseling for people with HIV. They own four properties, one which is a treatment facility, and two for families -- for people that have families. One supportive living residence and one independent living residence, which is a studio apartment. [In the independent living residence] you have minimum case management. You probably have someone around there three or four days a week -- as opposed to supportive living, where you have case management around the clock. It just basically becomes your own apartment.
That was a stepping-stone for me -- to go from supportive living into independent living. I doubt I would have made it, going straight to independent living, because I wouldn't have had any support, any restraints. I probably would have relapsed. It was a nice stepping-stone for me, to go from there.
While there, I went back to school and I got my bachelor's degree. I did about a year term with AmeriCorps, with the National AIDS Fund.
How did you pay for school?
The school, I paid through student loans, grants, Pell grants, just a financial aid package ... all that good stuff. I already had about two and a half years of college at Chicago State, which I did in the early '70s, so it wasn't long before I was able to graduate. I thought I wanted to go on and be a certified alcohol/drug counselor, so I first went to Harold Washington. I did an internship at the place I got sober, Haymarket, and found out that it wasn't for me. I continued school at National-Louis and got a degree in Applied Behavioral Science.
Right after graduation, I went to apply for an AmeriCorps position, which is a volunteer position where they do pay you a stipend. I did a year term with AmeriCorps, and I served at the Haymarket Center as a health educator.
The Haymarket Center -- isn't that one of the largest treatment centers in Chicago?
I never got numbers on that but I would go out on a limb to suggest that I strongly believe it's probably the biggest treatment facility in Chicago. Everybody knows where the Haymarket is. I was there three times as a client. I was there two more times -- one time I did an internship for the CADC, and another time, I served a year there as an AmeriCorps worker. I have got kind of a long history with Haymarket Center.
Now I'm going to ask you some questions about your health since your diagnosis. Did you go on HIV treatment immediately?
No, I didn't. When I was diagnosed, I had an AIDS diagnosis from the outset. In a way, that was good, because I didn't have to worry about going from HIV to AIDS. I was already there.
What was your CD4 count?
Sixty, at that point.
Did they do a viral load back then?
No, they didn't do viral loads, but they did do a T-cell count.
So you had 60?
Sixty T cells, right. Because of my drug addiction, I could not stay adherent to any of the HIV medications. When I would go to the doctor, he would put me on a new regimen and I would fill it. He would say, "Are you taking your medications on time?" I would say, "Sure," because I was ashamed of my drug addiction.
But the fact remained that I would come into my house and know that I had to take my medications, but I had $20 to $30 of cocaine in my pocket. I could not wait to take the cocaine or I'd start vomiting. That's how strong my addiction was -- just in anticipation. Then, once I took the drug, I was pretty much dysfunctional. That's why I didn't have a lot of sex at that time. I would just stare at the walls. That's how it was for me.
Next day I would double up, take the medication twice. Of course, that's not how HIV meds work. I would get on each new trial study that came out. I would get on it, because I was failing. Within a few months, I would be resistant to those medications, as well.
Even at this point, I would end up in the hospital two, three times a year, for pneumonia, histoplasmosis and all kinds of crazy things. My blood pressure at one point was 70-over-something. I needed blood transfusions. I came close to death many times. My parents would come to see me in the hospital, and they would look at me and cry. I would think, "What's wrong with these people?" You know, I'm not getting ready to "check out." But I was very close to death.
In some kind of way, I would seem to recuperate. It would take a long period -- six months -- and I'd be back to [the way I was before]. I'd go out and get high again, and within a few months I'd be back in the hospital.
At one point, I even ended up in a nursing home. I did notice that one time, I was sick in the hospital and I could barely walk, couldn't do a push-up. I got angry, and I started doing bicep curls with the desk chair in the hospital.
When I would get healthy, the days I wasn't using drugs, I would try to put some kind of exercise routine in my life. After I got sober five years ago, I rarely went to the hospital. The drugs I was using, the cocaine, etc., were killing me quicker than the HIV -- much quicker. The combination of the two, really.
When I stopped using drugs, for some strange reason, I didn't find myself back in the hospital. I would continue on with my exercise program and try to build my body up. I think it helped me because, even though I was sober, the HIV medications still weren't working. My viral load continued to escalate to over a million copies, and my T cells dropped down to one. I didn't have much hope, but I did do a lot of exercise and cardio strength training. It seemed to keep me relatively healthy.
When the researchers came back from Barcelona, Spain -- there was a huge international AIDS conference down there -- I heard about the new drug, Fuzeon [enfuvirtide, T-20], and that's when I got a little hope in my life. I started thinking more long-term. That's when I actually decided to go back to school.
So what was your regimen once Fuzeon was approved? Or were you in a clinical trial?
So you were getting the drug for free?
How were you getting the rest of the medications?
I was getting the rest through Medicare and Medicaid. I got right into SSDI before then. It didn't take me long.
SSDI is Social Security disability?
Right. A lot of people have to fight for it. But I was so sick, they said, "Y'all give that guy Social Security. He won't be around long anyway." So it didn't take long for me to pick up SSDI. That's how I paid for my medications.
What was your regimen? Fuzeon with what?
At that point, I had been on just about every drug out there. I don't remember. If you name it, I probably will know it. Right now, even now, I'm on experimental drugs. Actually, I'm just coming off of one because it just got approved by the FDA [U.S. Food and Drug Administration]. But I'm still taking Fuzeon.
Do you take darunavir [Prezista]? It used to be called TMC114.
Yes, that's what it is. Right. That's what I'm on. I just came off the study, so this is the first time I'm actually going to have to get that medication through a prescription. But with the combination of that medication boosted with Norvir [ritonavir], with the Fuzeon, and Epivir [3TC, lamivudine], I'm undetectable today. And my T-cell count is hovering right around the 200 mark.
You're undetectable for the first time since you were diagnosed in 1994.
Right. My viral load just continued to escalate over the years. Just until about six months ago, or six to eight months ago, when I became undetectable.
How's your adherence now?
It is about 99.3 percent. That's a guess. I might miss a dose once every three, four months; I might forget a dose. But that's not bad. I don't miss medication because I set a routine, and once you get into a routine ... I just do it pretty much without thinking. It just becomes a part of your life. But the Fuzeon is a little challenging, because it takes time to mix it. I have to get up extremely early to make it to work, so I don't have time to mix it in the morning. I mix two doses at night, one which I inject. I put the other one in the IV, in the refrigerator, and inject that in the morning.
How did you find your current doctor? Did you have to look hard?
No. A lot of things in my life seem to kind of fall in my lap. I don't know why. I was going to the CORE Center for years, which is an excellent facility.
It's called the CORE Center?
Is it affiliated with a hospital?
Yes. It's affiliated with Cook County Hospital. That's the biggest public HIV clinic in Chicago, I believe. I'm pretty sure it is. They service a lot of people. The only problem with the CORE Center is, it's an all-day process. When you go there [for] a doctor's appointment -- especially if you're going to get your medication that day -- you might be there eight hours.
I was dating a girl at that time who was going to NorthStar. I had Medicaid insurance. She said, "Well, if you have got this, you can go to the NorthStar." I said, "Well, no. I want to stay where I'm at because this is what I'm used to." Anyway, she convinced me to try it; and that's probably one of the best things I have ever done.
What is NorthStar?
It's the largest private HIV clinic in Chicago. So you do have to have insurance to go there. Medicaid is fine. I was on Medicaid at that point.
They take Medicaid?
At the CORE Center, you don't need anything -- insurance, Medicaid, anything.
Right. You don't have to. They'll take it if you have it.
You just walk in and they'll take you.
Whereas, at NorthStar, you need to already be in a program.
Right. You need some kind of insurance group with SSI.
Right. But the advantage with that is a couple of things. Number one, they are always on the cutting edge of HIV. Some of the doctors there are HIV positive. They write articles for TPAN's magazine, Positively Aware. They are always on the cutting edge, and they are always the first to get these studies out. Also, when you go there, the huge advantage is, if your appointment's at 9:15, by 9:30 you're in the doctor's office, and by 10:00 you're on your way home. That's a huge advantage.
Right now, I'm waiting to get on another study. I just came off of one study, and I'm going into another study, which is a growth hormone to inject into your belly to make the lipodystrophy in the belly -- fat tissue around the belly -- dissipate. So I'm really looking forward to that one.
We just covered a new study about that. So, is your doctor an African American?
No. No, he's not.
Do you think it matters?
No, it doesn't. It's funny, because I never even gave it any thought till just now. You know, the most important thing is the relationship with your doctor, the development of trust. I'm getting to the point now where -- I just got married, August 19 -- I want to get my wife -- she's HIV positive -- into some kind of insurance. I really can't afford to bring her into my insurance, which is a PPO; to do that out-of-pocket is $400 a month, just for the premium, not counting the medications and co-pays.
You're on private insurance -- not Medicaid, then?
Right. Now I'm on private insurance since I went back to full-time employment.
Does NorthStar take Medicaid as well as private insurance?
They take Medicaid, they take PPO, but the only thing they do not take is HMO. I was thinking about switching to an HMO so I can afford to put my wife on it. But now I'm thinking about a different strategy, because if I went to an HMO, I'd have to leave that clinic. They have been very helpful for me, taking care of my health. I would hate to go somewhere else.
Does your doctor treat you like a partner, in terms of making decisions about your health?
Pretty much. He'll ask me, do I want to do this, do I want to do that? You know, we'll talk about it and come to some kind of decision.
How long have you been seeing him?
It's been about, I would say, three years. About three years now. I'm really comfortable with them because they know my history. I'm prone to respiratory infections and once I start coughing, and I start coughing phlegm -- usually in the wintertime -- if I don't get really aggressive with it quick, then I can end up in the hospital. They know that, so when I start getting my cough, I go in there, and they'll give me some antibiotics. And hopefully it will knock it out. But if I went somewhere else, they might want to run tests, wait two or three days. When that happens, I don't have two or three days; I need to act right now in order to keep that from escalating.