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Do As I Say, Not As I Do

Spring/Summer 2013

Marvin Freeman

Marvin Freeman

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.

More From This Resource Center

10 Questions to Ask Yourself Before You Begin HIV Treatment

Are Your HIV Meds Working? Warning Signs and False Alarms

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.
See Also's HIV/AIDS Resource Center for African Americans
HIV and Me: An African American's Guide to Living With HIV
More Personal Accounts on African Americans and HIV

Reader Comments:

Comment by: Dave Morris (Sacramento) Fri., Sep. 23, 2016 at 9:40 pm UTC
Pure BS. I went 20 years with no meds. After I started I went off for months at a time and restarted and stopped several times. I dont buy this crap for one minute. Yeah start immediately, that way the drug companies start their profits sooner. Don't be cowed into putting drugs in your body until you think it's the right time
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Comment by: Karla Wright (Georgia) Wed., Mar. 16, 2016 at 9:19 pm UTC
I have been living with HIV since, I know 1989. Which puts me at 27 years. I have lead a full life. Married. Miss carried 2 children. Have one healthy child who will soon turn 20. She nor my husband contracted the disease. She is now at one of the top universities in this country. Living her dream. Studying medicine. As for me I went on to persue my masters degree. I am disabled now because of the mental stress that comes with trying to stay afloat. My husband is now deseased. Not because of HIV contact. He died in a house fire. I miss him. He was a special kind of person. As for as the meds. I spend my disability money to survive. To buy my meds. I have wonderful doctors who take very good care of me. I have only been very sick once. God and the help of great doctors brought me through. I also spend large amounts on health insurances. Yes I am a black woman. I used to fear telling my story but. God us to good for me to keep silent. I want to tell others that there are some doctors who really care. Even being of other races and nationalities. I have been blessed with the right combination of physicians. Some referred by others and some God led me to. I have a wonderful chuch. It is not a mega church. I've only told a few my story. But when I'm out , I tell others because keeping it a secret will eat away at your soul and spirit. Those that I have told embrace me with open arms for having the courage. I am selective in who I tell. As you may know this is not my real name. But my story is true. I have people that I love that I don't want to embarrass. But I am happy to tell all. Hold on DON'T Quit. Gods on your side. I could go on and on. But I'll stop for now. GOD Bless each of us on this journey. He will if you don't put it off.
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Comment by: Paul cochran (Tulsa ok) Thu., Feb. 4, 2016 at 10:18 pm UTC
As a former ER doc, now psychiatrist, I found your comments interesting but your conclusion perhaps not at the top of my list. The fact that you had so much distrust for reasonably trustworthy sources mitigates against listening to the sources that influenced you, & warning others (w or w/o HIV) of them. Feeling that drug companies are out to get you, white people are out to get you, no one cares etc. is perhaps an impact of the Al Sharpton-Jesse Jackson-white-privelage approach of being a black American (@ least partly). Obviously that was not a benefit to you and therefore, your conclusion that "the system" needs people like you to be counselors is only going to help a very narrow sector in a very minor way. What you should be preaching against is the forces that gave you such a warped outlook, and ask yourself what kind of influences help people to overcome that warped world view. for starters I would suggest reading The Hiding Place and other great books where people went through hardships that modern Americans can only vaguely imagine. People whose faith carried them through unspeakable hardship and cruelty at the hands of Nazis, and then carried them beyond the hardships of their earthly life! (for modern materialists, that's spelled e-t-e-r-n-i-t-y) After that, try talking to someone about Jesus! PS, works better than Prozac
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