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Why don't you introduce yourself and tell us a little bit about what you do, your history with HIV and your diagnosis?
My name is Ford Warrick, and I am 40 years old. I was diagnosed with HIV in 1993. At the time, I was a student and I was uninsured. I basically went from clinical trial to clinical trial, getting on different medications -- just whatever I qualified for. Because I didn't have insurance, I wasn't eligible for Medicaid or Medicare, or anything like that. So I went along that way for several years.
I had the various side effects that you have when you're on AZT [zidovudine, Retrovir] or Epivir [3TC, lamivudine], or the other early HIV medications. I went along fine for years, and really didn't have a whole lot of health problems. I had a bout with shingles. I had some thrush at one time, things like that. My lab work, however, was bad. I went from HIV infection to AIDS diagnosis within six months. My CD4 went down to 50. My viral load was sky high. For some reason, it just happened to hit my system really quickly.
Did you ever get an explanation for why that happened?
No. My doctor didn't really have an explanation. I knew exactly when I had been infected and, like I said, it's not like I had had it for a long time and not known. I knew when I was infected and for some reason it was one of these situations where, shortly after I was infected, I got severe flu symptoms [and] became very sick. That cleared up, but then, like I said, my lab work just went bad really quickly. Initially, my CD4 was 500, then it went down to 300, then 200, and it just kept dropping. My viral load wasn't changing; it was just up there.
Then slowly, it kind of stopped. My labs kind of stabilized and it slowly started to climb. But, like I said, even though my labs were really bad, I didn't have a lot of health problems. It was kind of odd, because the doctor's telling you you're in bad shape, but you don't feel like you're in bad shape. You know, you feel pretty normal.
So that went on for quite some time. Then I got insurance when I got out of school. I [got] on a regular med regimen. My labs improved. But for years, when I was on regular meds, my viral load never went down to undetectable because I didn't go on a protease inhibitor. My doctor recommended -- and I agreed with him -- that as long as my viral load stayed low -- which, at that time, was 3,000 -- that we [not] mess with it. We were going to stick with these medications. So we avoided going on the protease inhibitors for quite some time.
The logic behind that was to spare the protease inhibitors, in case you needed them at some point in the future?
Exactly. As long as my health was okay, and my viral load was low, we wanted to hold off, in case [the meds] stopped working. Because we were worried that we were not sure how long these medications were going to be effective. So our idea was: Let's keep everything in our arsenal until we need it. Eventually, in about 2000, I started taking a protease inhibitor. I was on a regimen of Kaletra [lopinavir/ritonavir] + Viread [tenofovir] + Epivir. That's when I went to undetectable. But that's also when the lipoatrophy really kicked in, or I started noticing it in my extremities. But it really didn't bother me that much because it didn't look that bad.
What did you notice, in particular? Was it in your arms and legs?
Yes. My arms and legs started getting veiny. I've always worked out and have been pretty muscular. So the veins kind of looked like I had been working out a lot, and it didn't really bother me that much. But when it started affecting my face and I started getting comments on it, that's when it started upsetting me. I went through a period -- I guess it was around 2002 or 2003 -- where I had some kind of GI [gastrointestinal] problem, and I lost 30 pounds. That, combined with the lipo, made me look really bad, and I got a lot of people coming up to me, saying, "What's wrong with you? Are you sick? You need to gain weight." You know, all of these types of comments.
Did you feel that people identified that look as the AIDS look? Or was it more general than that?
No. I live in Greensboro, N.C. I don't think that people here, the general population, are very savvy when it comes to HIV. I don't think that they recognized it as that. I think that if I went to a major city, they would recognize that. But I don't think the people around where I live really recognized what it was. I don't think that most people here have ever heard of lipoatrophy, so I don't think that it was that. They just knew that something wasn't right.
Then you said that you got sick and lost a lot of weight?
Yeah. Around 2002 or 2003, I had some kind of GI problem that they never could figure out, and I lost 30 pounds. Combined with the lipo, I looked really bad. I managed to gain the weight back, but the lipo never improved. So even though I was gaining weight, I was still getting comments that I was too thin, that I looked tired, [and questions such as], "Is something wrong with you?" These types of comments.
Over a period of time of having that experience, of people responding to you that way, what's the cumulative effect of it?
Well, the way it affected me was, I felt self-conscious. There were certain people who I avoided seeing because they hadn't seen me in a while and I didn't want them to see me looking bad, and I didn't want the questions associated with it. I think that I, kind of without knowing it, stopped looking people in the eye. When I was working with patients and things like that -- I'm a mental health counselor -- there were certain people who, I could tell, were studying my face, trying to figure out what's wrong, or "Why do you look this way?" You know? I even had a couple of people comment on it. I had one person say, "Your face looks odd. You look like you should be on Star Trek." This, of course, didn't help my self-esteem. I would look on the Internet, researching lipoatrophy, trying to find: Is there anything in the works in terms of a cure for this? Do they know what causes lipoatrophy? There didn't seem to be a lot of progress.
What did your doctor say?
My doctor basically said, "There's nothing that I'm aware of that can help this. We can change your meds if you want to, but I don't know of anything specifically that's going to help with this problem."
Was he aware of which meds were causing it?
No. I actually -- because I had researched it online -- think that I knew more about it than he did. He had contacted specialists, but several years ago, they really didn't know what meds were causing it, exactly. They suspected that it was certain meds, but they didn't really know.
So, let me ask you. Have you been on d4T (stavudine, Zerit)?
You were on Epivir.
Were you on AZT, as well?
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.
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.
How can you have no results if there's an injection of a fluid into your cheeks?
What happens is, with Sculptra, it's injected into your skin, and then your body reacts to the particles in Sculptra. It's suspended in a fluid, and the particles cause collagen to be generated. For some people, their body doesn't react to the particles as well as other people [do]. It's dependent on your body reacting to this substance being injected, because the Sculptra itself and the fluid eventually just get absorbed into your system and go away. They're counting on that collagen to be generated to create the filler.
There's no real way of predicting, is there, whether it has to do with your immune health, or anything like that? Or is it just an idiosyncratic thing?
According to the doctor who I spoke to, they can't really predict who it's going to work well for, and who it's not. He said that he's had people who have done well after a couple of treatments. He's had people who had multiple treatments and had no reaction. He's had people who have had a couple of treatments and then, all of a sudden, on the third treatment, it works. He said he didn't really have an idea of why, with some people, it works and [with] some people, it doesn't. I think, just like any medication, it reacts differently with certain people. So that was Sculptra. The other options were leaving the country and going to Canada, Mexico, Brazil or Italy to have a permanent filler done, such as Bio-Alcamid or PMMA. They are both permanent fillers, so you're not really as dependent on a reaction, the way you are with Sculptra. After talking with different people about their experiences with different physicians, I decided that PMMA was more of what I was interested in because, for one thing, it was more affordable. It was much less expensive than Bio-Alcamid.
How much are the comparative prices, approximately?
I contacted Clinica Estética, in Tijuana, Mexico, who has done Bio-Alcamid for years. They gave me a quote of $4,300 to do my face. I had contacted Dr. Márcio Serra, in Rio de Janeiro, who estimated it would be $600 to $700 to do my face.
With PMMA. One of the differences between PMMA and Bio-Alcamid is that Bio-Alcamid apparently can be removed. PMMA cannot be removed. Once it's there, it's there. But PMMA has an advantage over Bio-Alcamid, in that it's a smaller filler. So, it tends to give a more smoother appearance than Bio-Alcamid. Since I started researching this, Clinica Estética in Tijuana has gone from using part Bio-Alcamid, part PMMA, to all PMMA in most situations.
What is PMMA made of?
PMMA is made of a plastic that has been used for years and years in joint replacements, and it's also what contact lenses are made out of. So it's been used in the body for many years and people don't have allergic reactions to it. I felt good that it's a substance that's been used in the body for numerous years. What they do is that they have it in different concentrations, depending on how much filling needs to be done. For example, I had PMMA done in my buttocks and my face. In my buttocks, [Dr. Serra] used a higher concentration of PMMA than in my face, particularly my temples. Because the skin is so thin there, he used a 10 percent solution, where[as], in my buttocks, he used a 30 percent solution. So that's what PMMA is, basically. Bio-Alcamid is a polymer, as I understand it, which is larger than PMMA. Therefore, for doing temples and things like that it's not quite as good, because it sticks out too much; it's too voluminous.
So you went to Rio de Janeiro?
Yes. I went to Rio de Janeiro. I actually went twice. I went in January and had an initial treatment of my face and my buttocks. When I went there for the first session, Dr. Serra told me that it would probably be two sessions for my face and possibly three sessions for my buttocks.
Was that a surprise?
No, it wasn't. Because I had read that what Dr. Serra had done typically is, especially with your face, he kind of under-fills it the first time. Because when you have these injections, he's injecting a fluid. The fluid gets absorbed into your body and so, what he does is, he does the initial one, and he kind of under-fills. Then, with the second treatment, that's more of a touch-up, where he can see where you need a little bit more. Because, like I say, you can't remove this filler. So he under-fills, initially, and then does a second treatment, where he touches up.
It sounds almost like -- well, it clearly takes a great deal of artistry on his part.
Right. That's one reason why I went to him, is because he's done hundreds of treatments with people. And there's technique to this. For example, he was telling me that through years of experience, he's learned kind of the pattern of injections that he has to do, based on the lines of your face, because as you age the filler will follow the contours of your face so that it looks natural, even if you have continued lipoatrophy. Also, experience is necessary, because if you don't do the injections to the proper depth in your skin, you could end up with granulomas, which are basically red lumps that can form on your skin where you've had an injection. So one thing that I have told people online who have asked me about my treatment is, whichever doctor you go to, make sure that they have experience with lipoatrophy, that they have experience doing this type of treatment, because it's not just sticking a needle in your face and shooting something in. There's artistry to it.
What's the actual process like? How long does it take? Is it painful? How many needles does it take? How many injections?
Well, we talked for quite some time about what my expectations were, what I wanted. He looked at my face. He looked at my buttocks. He took photographs. He explained what he was going to do. With my buttocks, he gave me localized injections for numbing. Then it took, he said, about 60 injections per cheek for my buttocks, for my first treatment. I felt almost nothing when he did my buttocks, because it was numbed and I just didn't feel it. I definitely noticed the results when it was done. It was a dramatic difference.
Because my butt had atrophied to the point where it was basically muscle. I had lost so much cushioning that when I would sit for long periods of time, it would be uncomfortable. So when I had this done, it was like I had a cushion back. It was definitely much more comfortable to sit down after the first treatment. He spread a numbing cream on my face. He said that he couldn't do numbing injections into my face, because then your facial muscles relax and he can't see exactly the way your face is shaped. So he does a numbing cream. But, I have to say, the facial injections were painful. They were uncomfortable. And also, he has to press down to spread the solution in your face. Just having so many injections in your face and having him press on your face, it was very uncomfortable.
How long did it take?
The entire process took about an hour and a half, and that's including the consultation and having the injections done.
For your face and your butt?
Right. So it really didn't take that long. Then I went back the second time in the middle of March. He did a second full treatment on my butt and a touch-up treatment on my face. Then we both felt satisfied that two treatments were enough for my butt, because it just looked fine, and we were both happy with it. So I feel that my treatment is complete at this time, unless I want to have touch-ups done down the road.
How are you feeling now about the way you look?
I feel much better. I feel much more self-confident. I feel like I look like a normal person. My goal was not to turn back the clock 10 years, or something like that; I really just wanted to look like a normal person. Because I didn't feel like I looked like a normal person before. So now I feel more confident. I like my appearance. I like looking at myself in the mirror now, where[as] I didn't before.
That's wonderful. I'm curious to know: Once you get used to it, is it as if it's just natural fat?
Yeah. I mean, I touch my face and I don't know that there's a filler in my face. My face feels completely normal. I haven't had any problems with lumps or hard areas, or anything like that. My face and my butt just feel normal to me. Although, initially, it's a little bit of a shock, because you get used to touching your face and there only being muscle and bone. Then, after the treatment, and you have your face back, it's kind of a change, because you touch your face and you have cheeks again. You know, and it feels like a normal face. So it's a change, but it's a good change.
Were you able to get your insurance to cover any of this?
Did you look into that?
I contacted my insurance company specifically about Sculptra, because I know that they're not going to pay for something out of the country that's not FDA approved. I wasn't even going to present that to them. But with Sculptra, they said, "Well, we've never heard of this. Get the doctor to describe it and we will run it past our review company," and things like that. Because I didn't decide on Sculptra, I didn't take it any further. My insurance company sounded like they would consider it, but the physician who I went to in Chapel Hill said that he had not been able to get any insurance companies to pay for this. I had heard that there [are] people who have insurance in California who have been able to get their insurance to pay for Sculptra. I think that those companies are few and far between, but I think people should at least give it a shot. All the insurance company can say is no.
Yes. I spoke to someone who was absolutely determined to get his Sculptra treatment. He got the product itself via the patient assistance program or compassionate use and was determined to get the surgery, such as it is, paid for. It took a lot. It took six months and many appeals, but he finally was able to do it. He was able to do it , he thinks, because he had a therapist who documented in great detail the kind of psychological price that he was paying and the way his life had been affected by this.
Right. You're going to have to prove to the insurance company that you're not doing this solely out of a cosmetic reason, that there's an impact on your mental health, or there's an impact -- for example, like, with my butt, that you have trouble sitting. That it causes you a physical problem, something like that, in order to get insurance companies to pay for it. Like you say, it can be done, and I would encourage anybody who's looking into Sculptra to try and get it paid for. But I didn't even bother with asking them to pay for a non-FDA-approved procedure in Brazil. There's no way they're going to pay for that, so I knew that I was going to have to pay for that out-of-pocket.
How much did it cost you altogether?
The entire cost for both of the treatments was about $2,200. Of course, that doesn't include the cost of travel to Brazil. But the treatment itself: for two of the treatments, for the butt and the face, was $2,200, which, for me, was a bargain, considering just to have my face done in Mexico was going to be $4,300.
It also sounds to me like you have a lot of faith in this doctor.
I do. I had heard nothing but good things about him. Then when I met with him, I felt very good about it, because he'd been working with people with lipoatrophy, with people with HIV, for many years. The more I talked with him, the more comfortable I felt. Because I was perfectly prepared, when I went to see him, that if I was uncomfortable, I was just going to say, forget it. If I had gone into that office -- I don't care if I had flown to Rio -- if I didn't feel comfortable with him, I would not have had the procedure done. But he has a lot of experience. He's very compassionate. I have nothing but good things to say about him. I didn't feel like he was doing this to make a buck; I felt like he was doing this because he had had so many friends who have had problems with lipoatrophy, who have had problems with HIV, that he took it upon himself to get into this in order to help people. And I feel like he knows what he's doing.
Did you travel there by yourself?
No. For the first treatment I traveled there with my partner. Then, for the second treatment, I went on my own.
So you have a partner?
Yes. I have had a partner for almost 14 years.
What has the impact of all this been on your partner?
Well, I think that, honestly, he's going to love me no matter what I look like. And he's had to deal with his own body change problems. He doesn't have as much lipoatrophy as he has the fat redistribution, with buffalo hump and things like that. And he's thinking about options to correct that. But for me, he was very supportive. He knew that it was upsetting to me. He felt good about the research I had done, and so he was completely supportive of me getting this treatment. He just felt like if this is going to make you feel better and you feel good about it, then great. Let's do it. He was just behind it 100 percent. I think it was more just because he knew it upset me and he didn't want me to feel so self-conscious anymore.
In the end, did you switch off of the Epivir or AZT?
When was that?
I switched about nine months ago. I really switched to get off of the Viread + Epivir. I had side effects from the Kaletra, and also my cholesterol was through the roof, being on that med combination. So [by] switching I have not only gone down to only having to take meds once a day, [but] I have eliminated the side effects that I was having from the Kaletra and my cholesterol has gone down to normal.
It also sounds like you have always been exercising and healthy.
I've always been very active. I have always worked out. I have always jogged. I've been pretty health conscious. I try to keep up with what's going on in HIV so that I know how to manage my treatment, things like that.
It must be so frustrating to see your cholesterol go through the roof like that, when you're doing everything right.
Right. It was just a side effect. It was a side effect, probably, of the Kaletra, and you know, I was doing everything right. I mean, my lipids were through the roof. They are supposed to be, I think, around under 400. Mine were like 1,600, or something. We had tried all of these different cholesterol medications, none of which put a dent in it. I really needed to switch off of those meds, just to get my cholesterol level down. It worked, so I'm -- knock on wood -- I'm happy with this combination.
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