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Living With HIV: Watch Aaron's Story
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First Person: Ford Warrick

First Person: Ford Warrick

January 2006

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In your understanding, what do you think caused this?

To be honest, I think that part of it was just the HIV infection, and part of it was the medications that I was on. Because there was a period of time when I was not on any medication -- because I couldn't afford it -- and I felt like I continued to have the peripheral lipoatrophy, but it was slow. To me, when it really kicked in was when I started taking Viread + Epivir + Kaletra -- that combination. That's when it's like it sped up. That's when I really started noticing it. But that's just my personal experience. I don't have any evidence to that. That's just the way it seemed to work for me.

You were basically on the Internet, researching.


Trying to figure out ...

I would research every, say, six months or so. I would do a search, trying to find out: Is there anything new that's been discovered? Is there any new treatment? Things like that. I wasn't finding anything that was very positive. A lot of doctors were saying that once you lose the fat, it's not going to come back. That even if they [were to] figure out what is causing the lipoatrophy [and stopped it], once you've lost the fat, you've lost the fat. The chances of it coming back the way you used to look are very slim. So that was discouraging. That's when I started looking towards cosmetic treatments for it. Because I felt like, if this isn't going to be reversible, then I guess I should look at cosmetic treatments for it.

Over what period of time do you feel the lipoatrophy took place? Would you say it was six weeks, six months, three years?

It was years. I dealt with lipoatrophy for years. It's just [that], for several years -- I would say, for four years -- it was very slow. Then, during the past four years, it's sped up and become more noticeable.

Did you get the opportunity to talk to other people who were experiencing this?

Well, when I started looking at cosmetic treatments, I decided to start contacting people about the cosmetic treatments that they had done, such as Sculptra [poly-L-lactic acid, New-Fill], Bio-Alcamid [poly-Alkyl-Imide], PMMA [polymethyl-methacrylate, Articol], fat transfers -- things like that. And because I would read different articles, I would see various physicians' Web sites, and frankly, I'm a skeptical person, and I didn't always trust what doctors were putting out there in terms of their before and after photos, and their results, and things like that. I felt like the best information was from people who had actually had these procedures and didn't have a vested interest in selling a product. So I contacted various people over the Internet, asking for their experiences; if they could share photographs, so that I could get a better idea of what I felt would work for me; [about] any complications that people had had; or whether they were dissatisfied. Would they do it again? Those types of things.

"I avoided people. Without knowing it, I stopped looking people in the eye. I even had one person say, 'Your face looks odd. You should be on Star Trek.'"

So you really undertook a lot of research.

Well, I did. Because, frankly, I was afraid of having something injected into my face, and what that would entail. So I wanted to know as much as I could about it before making a decision. To me, I felt like it was a serious decision, and something that I needed to research before going into -- before really having it done. So I wanted to learn as much as I could and figure out what the options were, before making a decision.

Can I ask you if you were getting support from friends or family in dealing with this emotionally? It seems to me like it would really be the cause of some serious depression.

I didn't even want to discuss it with people, frankly. I wanted to avoid the topic. I didn't want people to bring it up. I hated every time someone would bring up my appearance. I just wished that people would -- it's like I don't want to hear it -- just leave it alone. So I didn't discuss it a lot with people. I discussed it with people online, but as far as friends and things like that, I really didn't want to discuss it that much. And people, I feel like they want to make you feel better [by saying things like], "Oh, it's not that bad" and "Oh, you look fine. You just looked ripped." But you look in the mirror, or you look at a photograph, especially, and you just cringe. Because you're like, oh, my goodness -- that's what I look like. You know? So, I think, for me anyway, I [was] isolated more because of it. I didn't reach out to people. When I started talking to people, it was more out of a desire to do research than to really vent.

One reason why I posted my Web site was because there wasn't a lot of information out there. I had to kind of track people down and ask them if they would share their experience with me. There were many people who were perfectly willing to do that. It's just having to track them down.

There's no real centralized location for any of this information?

Not really. There are certain sites that are helpful. But like I said, I really wanted to talk to individuals. That, to me, was the best information. I wanted people who didn't have a vested interest in any kind of treatment, who would just be able to say, "This is what I tried." "It didn't work." "It did work." "I'm happy with it." "I'm not happy with it." These types of things.

So you got to the point where you had some understanding of the different options, in terms of cosmetic or reconstructive procedures. Can you explain what those were, and which ones you were weighing? And tell us how you came about making a decision?

I had narrowed it down. In the U.S., there are not a lot of options. The only approved cosmetic treatment by the FDA [U.S. Food and Drug Administration] is Sculptra, which was called New-Fill before it was brought to the United States. [In 2006, the Food and Drug Administration also approved Radiesse (calcium hydroxylapatite, Radiance) for HIV-associated lipoatrophy.] I went to a doctor in Chapel Hill, a plastic surgeon who did Sculptra, for a consultation. He discussed with me the process. Dermik [Laboratories], the company that manufactures Sculptra, has a patient assistance program, where you can apply and they will basically, depending on your income, give you the medication either free or at a reduced rate. Then you just have to pay doctor's fees. But for people who have severe lipoatrophy, like myself, it can take numerous treatments -- such as five to six for me, which was what they were estimating. The doctor's fee for that is about $500 a treatment. The other thing is: Sculptra is not a permanent filler, which means it will eventually go away. The doctor I spoke to had said, "I have some people who have had multiple treatments, with no results." That was discouraging to me, because I felt like I don't want to spend $2,000 and have nothing happen. So I was a little discouraged about that aspect of it.

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