Do As I Say, Not As I Do
In 2000, I was diagnosed with HIV and hep C. With the lifestyle I led, it didn't surprise me. "Sex, drugs, and rock and roll" was it for me.
But my mindset was against taking any medications. It seemed to me that people I knew who took HIV meds went through many physical changes -- I saw their bodies being disfigured, and many died. I would hear the war stories, and they were not good reports. I would see people in my support groups who weren't doing too well.
But they didn't tell me that they weren't taking their meds properly, and I didn't investigate it any further because I was just so fearful of the HIV meds. Even though I was using street drugs, I was more afraid of the HIV drugs. I thought if I took them, things might show up two years down the line -- like I might end up getting cancer from them. It was all fear-based. It was contempt prior to investigation.
Now, we all know HIV treatment is a big business, and that the drug companies don't really care about us. It's just big bucks. I felt they would put out these medications, not really wanting to find a cure, so they could get paid. I thought it was "bait and switch" -- you didn't know if you were getting a placebo or something, like the Tuskegee Syphilis Study. I thought, "Oh, c'mon, are you kidding me? I'm not doing that." I had all these ideas that we were guinea pigs, and I wasn't with that. I felt the corporations were going to take care of their own people and use us as guinea pigs -- that the meds were designed for white men.
And I saw those drug company ads on TV all the time with so many freakin' scary side effects: "This medication works but if you take it, your ass falls off!" You see an awful lot of that in the ads for HIV drugs, too. All those disclaimers so they can't be sued -- you're damned if you do and damned if you don't. You feel like if you take those meds, they may help you with one thing, but then you've got 5,000 more things you didn't have on the table that now you have to deal with. It's crazy. You see a magazine ad for an HIV drug with a nice-looking black guy and you think, "He looks good, but look at this stuff on the side of the page -- are you kidding me?" That's frightening, because you might be the 1% that gets that side effect.
It also seemed to me that the clinics in our neighborhoods weren't getting the best medications or the best information. They were getting the hand-me-downs or the leftovers. So I went into Manhattan, to the "Caucasian" hospital, because I felt they were getting stuff fresh off the truck. My doctor there knew I was still using street drugs, but she knew it was important to keep me in care. She didn't judge me -- I was very fortunate to have her when I was using. That helped me make the decision to finally start meds. Her compassion and understanding -- that was rare and special.
When I eventually did get medications, I knew you could sell them. Guys would hang around the pharmacies where they knew people were picking up their HIV meds. You would show them your meds, they would tell you the going rate, and you would get your money. Once you had the connection, it was easy. But when I did that with drugs from my neighborhood pharmacy, the dealer would say, "This is old, so I can't give you full price for it." That reinforced what I believed about the poor care we were getting in the 'hood.
Actually, many doctors know that people sell their meds. But they want to keep them in care, and if they refuse to give them prescriptions, they'll just go somewhere else and lie about it. So they hope that one day, like me, their patients will do what they want them to do. At least the patients are still in care. And if too many people leave, what's going to happen to the clinic? They could shut down.
I didn't want to wake up the sleeping dog. I thought that if I just ignored it, HIV wouldn't affect me. And I worried that the meds might trigger a "domino effect" that could mess up where I was at.
My health remained good for ten years. The information I read said, "If you don't take the meds, this bad stuff is going to happen." But nothing happened! That reinforced my fear-based decisions. I didn't want to wake up the sleeping dog. I thought that if I just ignored it, HIV wouldn't affect me. And I worried that the meds might trigger a "domino effect" that could mess up where I was at. Today I know that's not the case, but back then you couldn't tell me that. So I never knew what my CD 4 count was. I still don't -- I can't play that numbers game. Every time I got my labs, my doc would say, "You're doing good, but if it falls below a certain number, you need to start." And that was all I wanted to know.
In 2010, I got clean and sober and got work as an adherence educator, an HIV test counselor, and a group prevention facilitator. For two years I did HIV testing for many people, and I told those who tested positive to go on the meds. I preached adherence.
But I wasn't practicing what I preached, and I felt so hypocritical. I knew the facts, I went to the workshops, I had the information, I saw the stats, and I would teach all that. I saw the success others were having and I saw their bravery. It became very taxing at times. Sometimes while leading a workshop, I would try to avoid questions -- I would just give generic answers like, "Make sure you're seeing your primary care doc." And that was it. But I was evasive, because I knew I was not doing what I was saying. I knew what I was teaching was true for others, but that fear factor just wouldn't let me cross over that barrier.
Then my health started to fail. I could no longer keep up the facade. I began to listen and embrace the advice I was giving. I could no longer look the other way. To my surprise, my fears were not validated. I didn't get sick, and my body didn't fall apart! To the contrary, I feel so much better. I can truly say that adherence works. I'm happy to report that I've been undetectable for two years. And I'm still with the same doctor I've had for ten years.
Today, I can personally advocate that the meds work. We need more people like me who can say, "I was in the exact same place you are." That will have more of an impact than all the statistics. Real-life testimony that is tangible, touchable, and reachable will work. We have to hope that people will believe the testimonies of those who are taking the meds and living.
This article was provided by ACRIA and GMHC. It is a part of the publication Achieve. Visit ACRIA's website and GMHC's website to find out more about their activities, publications and services.
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