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Let's make this as personal as you can. Can you talk about when you first found out you had lipoatrophy, what your feelings were, and how you noticed and diagnosed it. Being a doctor probably gives you an added perspective on what was going on.
I can pretty much pinpoint when things started, because it was pretty abrupt. My first treatment was AZT [zidovudine, Retrovir] and ddC [zalcitabine, Hivid] in a clinical trial back in 1993, and everything went fine with that, except that all my counts kept falling, and I had some real toxicity problems with ddC. At some point, it was very clear that this combination was not working for me.
I went on d4T [stavudine, Zerit], and at some point I went on ddI [didanosine, Videx]. Actually, we switched to ddI first, instead of ddC and still had no problems, at least with lipoatrophy.
Sometime in the spring of 1995, my counts began falling again, and I went on d4T with ddI. The d4T dose that I was taking is about double what is currently given. I had a really good virologic response with this combination, though; my T cells rose from about 70 to about 200, which was great.
But very quickly, I began to see changes, first in my body, where at first I was happy about it. Because you just sort of lean down. I got really cut, and that was good. But when I first really noticed it was I think in -- I'm trying to figure out -- because I had my picture taken with the governor of Florida, Lawton Chiles, and I think it was in the fall of 1997. I have to look [at] what year he died in, but it was only a few months before he died. And I had my picture taken with him, and I was just horrified, because I thought -- actually it had to be 1998 -- I thought he looked younger than me. He was a really nice man, around 67 years old. That was almost three decades older than me, so I was not happy about that. That picture kind of really made me realize what had been going on.
I then had to have pictures taken for an ID [identification] photo in one of those "takes four pictures for, you know, however many quarters" in a train station. When I got back those pictures, they just really horrified me. I almost really didn't want to go back outside anymore. This was, of course, in the early days, when people were first seeing this.
A little later, I was having lunch with my uncle, and he looked up and asked me if I was "sick." That was the first time I realized other people were seeing it, too.
I was living in Miami Beach at the time, which obviously has a big HIV community, and I began seeing it in other people. For the first time, other than people that were really, really sick, walking around with IV [intravenous] poles a few years before, I could look at and tell who had at least that complication of HIV disease, and [I] realized that people could look at me the same way. I felt really exposed in a way that I hadn't before.
People will tell you, "Oh, you don't look bad." But you know you don't look like yourself. I think that was kind of like the strangest thing -- was to look in the mirror and see someone who didn't look like me. I think, also, the fact that I looked like a much older version of me did not make me happy.
So, for a while, you just kind of had to live with it. I did things like change the way I dressed a bit, to try and hide some of the veininess. I grew facial hair for a while. Unfortunately, on me, facial hair has never been a strong suit. My beard is not thick, and was already showing grey in my teens. I was really glad I wasn't like coming out in the '70s or '80s. Facial hair partially, but not really very completely, covered a little bit of the problem.
Over what period of time? Was it a matter of months, or a matter of years?
I would say it was actually, it was certainly, less than a year. It was late 1997 when I really noticed it, because I can time this to Governor Bush's election. Because this picture of me with the governor was taken shortly before Governor Bush took over for him. So I would say over -- that would have been January '98 -- so somewhere over '97. It was over '96 and '97. In '96, in the spring, I remember a picture taken -- I can pin this down a little better -- a picture taken where I was on the d4T and ddI and my cheeks had kind of blown up. It was before I got atrophy; I got really big enlargement of my parotid glands, like some people get. That really looked freaky. Then, the summer of 1996, I started -- that's when the Vancouver [International AIDS] conference was -- and I went on protease inhibitors. So I'd say it was like over the year of 1997 that the changes really became marked. Yes, 1997, I would say, the really drastic changes. I would say it took -- it didn't come on, like, immediately -- but I would say, over four to six months, it started becoming apparent. Within a year of being on the highly active antiretroviral therapy, it was very obvious.
Did you know what drug was causing it?
Nobody knew anything about this at the time. You really didn't start to see this until '96 or so. I mean, you didn't notice it before because you just attributed anybody who was getting thin in their face and body to wasting, and they were getting sick. Here, for the first time, you had people who were actually getting healthier, and yet, getting this gaunt, sick appearance in their face.
You were in a situation with your medication that you felt that you really had little choice but to keep taking what you were on.
Yes, when I started with the d4T, nobody had a clue that d4T was doing anything like this. All anybody knew was that it was working in people when AZT wasn't. A lot of people were finding it more tolerable than AZT. There was so much fear of AZT back then. d4T's complications that we knew about were some degree of neuropathy. But nobody knew about this. For a while, d4T was the most commonly prescribed HIV medication.
 When John took these photos in Paris, it confirmed that his face had changed dramatically. |
I think that probably nobody would have figured it out had protease inhibitors not come along, because I think that protease inhibitors basically made people live so much better that these other problems began emerging. I think maybe people were getting lipoatrophy before, but they were getting it when they were very sick and wasting, so you never noticed it. It was that people were getting healthier while getting this sicker look that was new. And when I was experiencing [lipoatrophy], nobody knew what the heck it was. It was just very clear that a certain group of men with HIV -- most of whom were taking heavy-duty therapy -- were getting this peculiar look.
Let me understand exactly what your treatment history was. By that point you had been on pretty much all of the D drugs.
Yes. I had been on AZT, ddC, ddI, and d4T, which was about all that was available.
And those are the four offensive drugs.
Yes. Especially ddC. AZT has some role, but probably less than the D drugs. ddC maybe the worst, but nobody uses it.
Okay. It wasn't long before lipoatrophy in the face became stigmatized as the AIDS look. You were talking about that.
Yes. Before it was described, I knew something was happening. In the area I lived in, lipoatrophy was a rampant problem. I noticed it early on, before people were talking about it, before it had a name. I remember telling a friend about it, and him, like, with some seronegative friends, and them kind of being shocked that I made the observation. Then looking around and saying, "You know, you're right. There's something going on." Of course, they were less concerned. I'm sure other HIV people were noticing, too.
Then what happened?
Well, you know, for a while, nothing happened, because you basically had to live with it. Nobody knew what was happening. Nobody knew if it was the medications, the disease, nothing. It [was] just sort of like this weird thing was happening. I think there was strong suspicion medication was involved.
Did you find that your doctor was sympathetic, or not?
You know, to tell you the truth, I can't really remember. I think he was frustrated that this was happening. We all knew it was. You know, my background is basically in pathology, and specifically in cancer. So, to some degree, I also reflected the feeling that, well, this is still a hell of a lot better than being dead. And it is. But it's less than looking normal. Again, as you got healthier and healthier, and felt like you looked terrible, it was tough. But I don't remember my doctor ever saying to me something like, "Well, it's better than the alternative." But I would not myself have found that to be an offensive remark at that time -- because it was [better than the alternative].
You know, if you offered me, again, the same choice, between facial lipoatrophy and getting sick and dying, I have absolutely no question: I would take the medication again. I mean, to me, that is a clear choice. I mean, there are a lot of people concerned with quality versus quantity of life, and of course, I am, too. But to me, you know, it's an issue. It's something that I care about. But it's not something I would die over, for not looking my best. It's better quality of life with lipoatrophy than dead.
I like being alive, you know? So I think I have heard a lot of people complaining about doctors seeming insensitive and saying that; but at the time when there was absolutely nothing they could do, I think that was the most reassurance that could be offered. I think maybe [now] that there are some options available, maybe it's a less acceptable comment. But I think in 1997 and 1998, it was a very reasonable perspective, and especially for the doctors who have been working in this now for 10 or 12 years, who have been watching their patients die slowly and horribly, that it really was a pleasant change, in its own way. That's probably an overstatement, to say a pleasant change, but it is better than the alternative, as they say.
I've heard doctors say that they were in denial about it, because they were so relieved that the combination therapy was restoring people to health. And there was also confusion about whether it was wasting. What was it?
Exactly. You know, still, it hasn't 100 percent resolved what's going on. But I think a lot of people were thinking well, maybe this would have happened in all of these people, just from HIV disease. But now they're living longer, so we're seeing it. I think, in 1998, that was a possible, plausible explanation. I don't think that's proven to be correct. But I don't think it was implausible. And it still may have something to do with it, HIV disease itself. I don't think it's the major insult, but it still could have an impact.
At what point did you identify it with your doctor as a side effect of medication?
Well, being a pathologist, I don't think that it was -- I didn't make up my mind, my own mind, about what was going on. There were probably some people who had less of a medical background who were willing to jump on the medication-is-the-problem bandwagon before I was. I think it would have been premature. But I was certainly open to the suggestion of it earlier. But I wasn't probably really convinced that somebody had a handle on not only that medications were doing it, but how, until actually I went to a seminar that -- I think that whoever it is that makes nelfinavir [Viracept] put on [Agouron Pharmaceuticals]. They had some interesting things about [the] possible mechanisms of this. Then you began to say well, maybe this is drug related.
But in terms of people catching on to it, it was interesting that at the International AIDS Conference in Vancouver, they were all very excited. That was the "hit early, hit hard, and we're going to cure this" conference. And then the next conference, which was, what? Two years or four years later? In Geneva. They were showing pictures of people with facial atrophy, saying look what we've done. So certainly by 2000, the medical community was very aware that this was, in fact, a real and serious issue that was having an impact on people's quality of life. But in terms of the mechanism of it, it was around then that I heard sort of plausible mechanisms for how some protease inhibitors might be involved, and how nucleoside drugs like ddI, d4T, could be involved, also. Then once you begin to have kind of an explanation that begins to make some sense, rather than just saying it's the meds, then I began to say, well maybe that probably is what's going on.
Did you reach a point where you sat down with your doctor and discussed treatment options?
No. I was way ahead of him on this. I have a friend in Toronto who's an HIV specialist, and he knew of a doctor in Toronto that was injecting polymethyl-methacrylate, PMMA or Articol, into people up there, and was having some kind of good results. So I have family in Canada, and I flew up there and saw this [doctor] -- he's a head and neck surgeon, actually -- who was very helpful. And we did one session of it, and it was very, very frustrating for me. I have heard people who have had very good results from PMMA. We'll talk about that later, I'm sure. But for me, it did nothing, except for about 36 hours I looked like me, and then the fluid went away. It never produced the kind of full cheeks that I had wanted to see again. But you know, it was very, very frustrating to see my face come back, and then promptly disappear. It was very tough, and expensive.
What is PMMA?
PMMA is polymethyl-methacrylate, and it's basically Plexiglas. It's the same kind of resin. And it is made into facial filler by basically taking this material, and they grind it up into particles that are really, really tiny, and suspend it in a matrix of collagen, and inject that into the skin. Like other products, what it's supposed to do is, the irritation caused by the foreign body causes your skin to produce more collagen, and excess collagen fills out your face so that it assumes a more normal contour -- even though what's now there is excess collagen and not fat. But it looks more normal. That's the theory, anyway. For whatever reason -- and it could have been that this was a very new technique for people with HIV, and the guy didn't know the subtleties of using it -- it simply didn't work for me.
What happened, exactly?
You stick enough needles full of fluid into your face and just from the reaction to the needles poking around and the collagen that's there, it sort of inflates your face back up. It's mostly water. As the water went away, you would hope that you'd then get some increased collagen that would fill things back out over a period of weeks. But that never happened for me, and so I was just left with back to ground zero.
So for 36 hours, you were sort of waiting with anticipation.
Exactly. Then pretty much by two weeks after I got home [the effect was gone.] I was kind of warned about this by a friend who's also a head and neck surgeon -- when people just get collagen injections, just the mechanical trauma of having all these needles stuffed in your face causes your face to swell a bit. Even if they didn't inject anything, for a while you'd look better, just from edema.
So theoretically you could just wake up every day and poke your face to get a ...
Well, theoretically, you could. But let me tell you: This is not painless. The women that are going to their Beverly Hills dermatologists to get their collagen injections every six weeks -- I have a lot more admiration for them than I used to. Because that stuff -- it hurts. It's not horrible, earth shattering pain, but it's really unpleasant. You're talking about a half an hour of somebody shoving a bunch of needles deep into your face, and it's quite like a bad day at the dentist, actually.
Do they use a local anesthetic?
It depends. Usually, people do use a topical or whatever. With different materials, it's different. I don't actually recall what this doctor in Canada did. He may have actually given me a local nerve block. I don't remember.
So at this point, you were still on the D drugs.
At this point, I was off. By the time I went to see him, I was now on protease inhibitors and with them -- wait a minute. I guess I still was on d4T. Yes, I stayed with d4T, 3TC [lamivudine, Epivir], and Norvir [ritonavir] + saquinavir [Fortovase, Invirase] for quite a long time, actually, until when Viread [tenofovir] came. I was sure that AZT was not working for me, and hadn't been since probably 1997. So I couldn't go back to it; ddI had made my face inflate with parotid hypertrophy, so I didn't like that. I thought at that point -- I might have switched sooner, had I thought that there was a reverse transcriptase inhibitor that I was susceptible to. There wasn't a lot of resistance testing happening at this point; it was all guess. But my guess, and it was probably right, was that for all of its problems at that point, d4T was probably still the best choice for treating my virus, even though it was causing these other problems. But when Viread came out, I was very quick to switch to that, because it was a new drug that I felt I was unlikely to have resistance to. Then I could go on and get off d4T. But that would have been at around 2000, maybe 2001. I don't remember when that came out.
Did that switch to Viread work virologically?
Yes, it did.
And you're still on it?
Yes.
Excellent. So, you're back in Miami Beach.
Right. I came back from Toronto and watched my face sag back to where it was before, which was really depressing. This was probably 1999 or so. And I think in November of '99 -- I'm not sure of the dates here, again -- there was a conference in Toronto about HIV. And there were some presentations on lipoatrophy and things that could be done to correct it. And there were two sessions in particular that I heard of, one about polymethyl-methacrylate, as done by a doctor in Brazil, Dr. Márcio Serra. And what's now called Sculptra (poly-L-lactic acid), then called New-Fill, by Dr. Patrick Amard in Paris. I debated both options. I talked to Dr. Serra in Rio, and I talked to Dr. Amard in Paris. With good fortune, I lived in Paris and worked there for a number of years. Because I'd had a bad experience with PMMA already, even though Dr. Serra seemed very sincere and was very proud of his results, I decided to go for Sculptra, or New-Fill, in Paris.
At this point, it was not approved in the U.S.?
No. It was brand new.
So you went to Paris.
Yes. My partner's a flight attendant. And because of living there, I have a lot of friends there. So it actually was much cheaper for me to go to Paris than to go to Rio.
Can you take me through the stages of the Sculptra treatment?
Yes. It's a long thing, because the Sculptra treatment works very much like I described the PMMA. Sculptra is basically -- it's polylactic acid. Lactic acid, like you've heard of lactic acidosis and whatever -- lactate. It's a long chain of lactic acid residues, and the material has been used in the human body for 70 years. It was developed I think in the 1920s or '30s as suture material. When they do something like take out part of your colon or your liver and sew things back together again, they often use those sutures because, you know, you don't want to have to go back and take those out. You put in a suture that's going to last for several months, but then it is slowly absorbed by the body, and it goes away. It's broken down into molecules of lactic acid, and your body's pretty well adapted to dealing with lactic acid. So it's a very natural product, in its own way.
It's been used for that for quite a long time. They figured out that you could make it also into a microfine powder, suspend it in fluid, and inject it. When you did that, the injected area would swell with increased collagen growth. Actually, I was told that that happened. They were looking at it as a delivery system for chemotherapy drugs, where they would embed chemotherapy drugs into polylactic acid, and inject that. And that would give you kind of a slow release of some chemotherapy drugs. They began to notice that the injection sites became firm and prominent. It was at that point that they realized that, hmm, this is causing this collagen reaction. Maybe we can use it cosmetically.
So Dr. Amard in Paris did a series of patients with advanced HIV infection and lipoatrophy, and found that he got very good results with that. Dr Amard is an amazing man, and he really cares about lipoatrophy, and helping those who have it. The way it's done is, just like injecting collagen or PMMA or whatever, the areas of the face that are sunken in are injected with this material, just this polylactic acid powder. Much as I described before, you get kind of an immediate swelling and edema, so the face looks pretty normal immediately. But again, over time that fluid goes away. So, over about 10 days, you look good. For a couple [of] days you look great, and over about 10 days you look just like you were.
Then slowly, over a couple of weeks, collagen does grow. So your face fills out. Not so much with the first treatment; it was almost imperceptible. Then I went back and had the same thing done again. And I would say that after the second treatment or so, people did notice. I didn't look normal, but people would say, "You look well rested." They couldn't put their finger on it, but they thought I looked better. After three, and certainly four, treatments, I looked significantly better. I wound up having a total of six or seven [treatments].
What's the period of time between the treatments?
It needs to be at least two weeks. It was longer than that. This took me about a year to do, just because of the logistics of getting back and forth to France.
But that doesn't really affect the effectiveness of it.
No. No, not at all. The problem is, you probably wouldn't want to do it too quickly together, because you want to see how each session went so that you can then increase or decrease different areas of treatment, or see what's worked and what hasn't, so you can kind of build slowly the tissue that needs to be rebuilt. It's kind of good that the fix is gradual and subtle, people don't see a shocking change.
So the tissue is collagen.
Yes.
And collagen is made up of ...
Collagen is collagen. It's protein fibers, basically. It's a natural occurring substance that your body makes. Your skin's elasticity and firmness is because of the collagen in it. As you age, the amount of collagen naturally in your skin decreases, and that's one of the reasons why the skin tends to sag with age. So you're basically causing your body to make something it makes naturally, to replace something that it's lost. It's not exactly what was there, but it's pretty close.
So after a year, you felt like you had your face back.
I felt pretty normal. It was not a 100 percent, but I would say it was 80 percent better. I didn't look sick, but I certainly looked thinner than I had. I would say the improvement was at least 80 percent.
And that was in 2000?
Like 2000, 2001.
And then?
And that went on for about a year or so. And I think that I had, over about two years, I began to see that -- the collagen actually begins to go away a bit. And say, 18 months to 2 years, most people will need a touch-up, or so. And around this time, I also became aware of a clinical trial using the silicone oil used for retinal surgery for correcting of facial lipoatrophy, and was accepted into it. I decided that for all that I was very pleased with what had happened with Sculptra, but as I said: It was about 80 percent improvement, and we always want a 100 percent. I was tired of transatlantic flights to fix it. The Sculptra was not yet approved in the U.S. So I decided that I would go; I would give this other thing a trial, although I have to admit a certain amount of concern that, it's, like, you know, what am I going to be injecting in there next? Silly Putty? I don't know. So I went, and Los Angeles had a series of three or four sessions of injection of liquid silicone oil [Silikon 1000 for retinal injection].
Was there any reason to be concerned about mixing these substances?
Probably there was, but I was willing to accept the risk.
So, silicone.
Now, silicone is a very misunderstood substance, because it isn't one substance. It's like, if I say oil, I could be talking about motor oil, I could be talking about sewing machine oil, I could be talking about corn oil, I could be talking about safflower oil. What you say, generally, when people talk about oil, they are talking about long chains of carbon atoms, with different structures at each end. And you change those carbon chains here and there by a little bit, and you get very remarkably different molecules.
When people say silicone, they are not realizing that there's no one formula for silicone; there must be 500 different preparations of silicone oil. Some are short polymers used for this; some are longer polymers used for that. Some is used in brake fluid. Some is used, again, for sewing machine lubrication. They are very different molecules. There is one company that makes a very, very highly refined silicone oil that's a very long chain polymer that is used in retinal surgery. This is highly purified. The polymers are long, of uniform lengths and very, very pure.
One of the problems with making silicone is since people are using it to, say, make brake fluid, they are not really thinking about medical use. So if there's like ammonia, or uranium, or rat feces, or whatever in it, nobody cares. Your brake fluid doesn't really care, you know? As long as it's appropriately compressible, that's fine. But in your face, that makes a big difference. There has been, and still are, a lot of people that are getting injected with "brake fluid" by drag queens. It's surprising how many of them do well. But there are certainly people with HIV who have had their lipoatrophy corrected with crazy things like brake fluid, or whatever was being sold cheap that day that contained silicone, who have had bad problems.
That's currently going on?
I suspect it still is because, again, people don't understand the difference between [different types of] silicone. They might not think about the difference. But they certainly wouldn't cook their food in Mobil 1, nor would they put Mazola oil [vegetable oil] in their car. But a lot of people don't understand that silicone is a class of compounds, and not one compound.
You were in the clinical trial because the manufacturer of the silicone was sponsoring it?
Yes. Richard-James [Development] Corporation, a small company, was doing a trial of Silikon 1000, a product often used in retinal surgery or for foot problems in people with diabetes.
OK. So you were getting the top of the line.
Yes. This is medical-grade silicone, as used in retinal surgery. And silicone is used to attach the retina in certain procedures, tiny, tiny droplets of it. So it's medically approved for one use. Under U.S. law, if a drug is approved for one use, you can't forbid its use for another. So you can use it under that exemption.
But the makers of the silicone were doing a trial?
Oh, absolutely.
Because they wanted, and they still want, FDA [U.S. Food and Drug Administration] approval?
Wanted and still want.
It's ongoing?
Ongoing, yes. The approval process [for Silikon 1000] is still ongoing. I'm not exactly sure where it is. There's been one paper printed in, I believe, Dermatologic Surgery, with very, very impressive results. Really happy patients and virtually no complications.
How were your results?
I'm delighted.
So this was two years ago? This was in 2003?
I'd say, actually, over 2004.
And so two years later, you're still ...
Absolutely delighted. I actually do want to go and have a final evaluation to see if maybe there's one area that might be touched up.
Can you then describe exactly the procedure?
Sure.
Because it sounds like you were the ultimate guinea pig.
Yes.
Of all of these, for you, this seemed to be the one that worked.
It's the one that seemed to work the best for me. I've seen people get incredible results from Sculptra, but I never seemed to get that last 20 percent. And I would say the difference between using silicone and using New-Fill/Sculptra, is that silicone itself provides most of the volume. In New-Fill, you put these granules in, the collagen grows, and the granules go away. So the entire volume, ultimately, is due to new collagen. But when you inject silicone, you're injecting a material that, in terms of texture, in terms of weight, is very much like fat, because fat is essentially oil. It's carbon-based oil, as opposed to silica-based oil. But it's still a very similar thing.
So what they do to inject silicone properly -- and it's very important that you stress "properly" -- is they use tiny, tiny needles, and inject the tiniest little droplets that they can. Because what you want [is for] the silicone to stay in one place. It's a liquid. Liquids flow downhill if nothing stops them. So they inject tiny, tiny droplets into the face. Over time, like any splinter, New-Fill granule, or whatever, your body reacts to foreign bodies by trying to wall them off. You get a little bit of collagen growth, which is basically your body's response to foreign material. So you get a little more boost in volume from that collagen as it grows. But that collagen also holds the tiny droplets of oil in place.
If you try to inject large quantities -- if someone says they are going to fix your facial lipoatrophy with silicone in one day, you should get up out of the chair and run for the exit. Because if you do that you have a very high risk that large globs of silicone will pour downhill, and they'll wind up in your jowls or somewhere you really don't want them to be. I should mention that some M.D.s have been guilty of doing this kind of correction, it isn't just "drag queens."
Ouch.
Yes. And that happens.
How many treatments did you have to have?
Four, I believe.
And they are spaced out by, again, a month or two?
I would say, three months at a time.
Now, what kind of actual shaping takes place to get a simulation of what your face actually looked like?
I took pictures of myself before to the dermatologist. I did this with the dermatologist in Paris, also. And by doing that, he was able to figure things out. First of all, it's very obvious where the deep pits are. But it's sometimes less obvious where the cheekbones were. And so he built back up accordingly.
What do you think makes people so willing to try risky black-market silicone?
Desperation. We all know desperation. But when I really, really wanted my face back, and there were no good options, I was told of a product that was available in some countries, but not in the U.S. It was called Biopolymer 3, or Biopolymer 2, or something very sophisticated. And I was actually given printed materials about it, and the printed materials told this wonderful story about an all-natural product that was the product of the biotechnology industry. That was enough of a non sequitur to set off a couple of red lights. And the other thing that set it off was, the company's letterhead from Geneva was in French, and all the product information was in Spanish.
A Swiss friend of mine instructed me that the Geneva address that was given was actually in Lichtenstein, at a mail drop address of the type you would use if you were conducting a criminal enterprise. I had another friend working for Eli Lilly in Geneva at the time, and I gave him the supposed address of the manufacturer in Geneva, and he said, "There is no such address in Geneva." So I became convinced that this was probably not good stuff, and advised people not to use it. Again, I know a lot of people in Miami who used this Biopolymer, and I think a lot of them wound up looking pretty good. I also know that some of people had bad problems with this.
Of the kind that you were describing.
And worse. When you inject lawnmower lubricants into your face -- and I'm really not exaggerating with that -- it's not prepared for human consumption. And there are impurities in there, which can cause various inflammatory reactions, which are unpredictable and almost untreatable. For some of these guys, everything will have been fine for a few months, and then all of a sudden their face will blow up like they had just been stung by a thousand bees. You can give them steroids and it will get better, but sometimes it goes away on its own. I have seen this. It can be horrible. I know of a case in Miami where a woman, for non-HIV, had this stuff injected into her face and that basically her skin sloughed off. It's really not something that I would recommend to anyone. I know there are a lot of people in the community who have used it, and I know, thank the Lord, lots of them have done well and not had problems, and are very happy. But I think that the risk of having complications is significant, and too high to recommend it, especially now that there are legitimate options.
Even though the options are all pricey?
They are all pricey, but pricey and safe. I can't tell you what the risk of having a bad reaction to bad silicone is. We have had, that I know of, two deaths in South Florida, where unlicensed medical people were injecting wacky stuff like brake fluid into people to make their butts bigger, or whatever. The people that are injecting these things are not well-educated health professionals. In one case, I think he was a janitor. And they don't know things about vascular distribution, distribution of veins and arteries.
If you inject silicone into someone's vein of circulation, it may wind up in the lungs and they have a pulmonary embolism. So having this kind of thing done by an untrained health professional, I think, is really, really a recipe for disaster. And actually, I have seen on the Internet a case where somebody died in a similar situation in Vancouver. I think there have been a couple [of] deaths in California. It's very tempting to say that here's someone who, for $700, $500, is going to completely fix my face in one sitting. It's really tempting. I can't tell you if the risk is one in a hundred, five in a hundred, one in four, whatever. But I think there is such a risk in doing it that I would have to advise anyone not to go that route.
And like anything else, if it sounds too good to be true, it probably is.
Yes. If someone's offering you -- and I have heard of one of these people trying to sell silicone and saying it was the really, really high quality Silikon 1000 for retinal surgery -- so she was charging, like, $500 for a treatment. And the vial for retinal surgery costs more than $1,000. So, there's just no way. I mean, you can't -- ten times or a hundred times as much liquid for a procedure that usually costs $1,000, and then treat the patient for $500 -- you can't do it. So if someone offers you really cheap medical-grade silicone, I think that would be another really good sign that you should run away, quickly.
How do people even hear about these kinds of black market procedures?
If you're in the community, you get told about these things from time to time. Oh, so-and-so is doing this there, and so-and-so is doing that there. These people are probably well-meaning. I think a lot of transgender people use them. I think it's one of these things. I think enough people have had good results that it continues. If everybody died from it, it would stop. But I think enough people are happy with it that they keep going. I actually went to get my hair cut once, while my partner was getting his driver's license somewhere in Florida; we'll leave it at that. And as I looked around the women cutting hair, I realized all of them were transgender. And they had a typical facial look of people who had had silicone injections. There's a look. And I'm sure they all had it, and that the results were cosmetically pleasing to them, and they would probably highly recommend this. But I know of enough really severe problems that I would, again, I'd just really have to recommend against it.
At this point, you said that you think you'll go back for maybe a touch-up?
Yes. Again, I had a lot of New-Fill in me and New-Fill's benefits tend to go away.
Right.
And when that has gone away, I think that maybe there are a couple of things that could be smoothed out.
Can you do that through the trial?
I'm going to see the same physician who did it as part of the trial, but it's not part of the trial.
Will you be able to get it covered through insurance?
No.
How much will it cost?
I really can't answer that. We haven't really worked it out. [Dr. Jones is now charging $900 per session.]
Yes.
I'm really going, basically, to see him, almost as a courtesy, so that he can know, for his own experience, how it went out and so forth and so on. Because he's curious, and a good man who is interested in his work. It's certainly available here locally in Miami now. I just feel like he did such a good job for me and he should see how his work went, and see if he thinks there's anything he needs to improve on.
But then, once you have these final touch-ups done, how permanent is it?
It's there. When you get silicone, you're married to it. New-Fill goes away. There are some other things, like, Bio-Alcamid [that] is advertised -- not publicly, but in the community, people believe that it's partially removable most of the time -- which may be true. But silicone, once it's in there -- [though] I suppose it's possible to go in and remove some of it, but you're never going to get all of it out.
What does it feel like to you?
Totally natural. Totally natural. If you looked at the product itself -- if you imagined really, really transparent vegetable oil, that's what it looks like and feels like. And that's pretty much the texture of fat in your face at room temperature. So it's a totally natural feeling.
Did you have a partner with you?
Yes.
When you went through all of this?
Yes.
What does he say about it?
Well, he's incredibly supportive and pretended he didn't notice anything wrong for a long time. But I think he was very excited when things got better, and very excited for me that I'm better.
And in terms of your medication now, have things stabilized?
Totally stabilized. I'm very, very fortunate.
Other side effects?
In terms of medication?
Yes.
Right now it's really hard to say that there's anything serious going on. I think there was, when I was on the earliest Norvir/Invirase mixture. That caused a lot of diarrhea; it was very unpleasant. I was really, really -- there were nights you just didn't go out of the house. It was bad. But it's gotten better and better. They changed the mix of Norvir and Invirase when you did those together. Occasionally I'll have a little bit of a loose stool, but basically things are pretty normal, and it's greatly appreciated.
Doctors say that lipoatrophy is pretty much a thing of the past now, in terms of people starting medication, because they are just not going to be put on d4T.
Right. I think in the U.S. and in Europe, that's probably true, that people are using d4T much less. Studies done by the ACTG [AIDS Clinical Trials Group] have really delineated combinations that are better or worse. A lot of people are on things like Truvada [tenofovir/FTC] + Sustiva [efavirenz, Stocrin] now, or things that are much, much more benign, and don't seem to be producing lipoatrophy. I don't think that you can say you don't see any; I think you still do see some. But it's not like it was in the mid-'90s, where you would just walk around Miami Beach, and it's like there's another one, there's another one, there's another one. I do think the incidence is probably much less, but I don't know what. It's still a subject of intense study.
In its own perverted way, it's a really interesting question: What the heck was going on there? It's one of these things where, in fact, a lot of the fat changes kind of reflect some interesting things that people are looking at, in terms of diabetes, obesity and heart disease. That probably ensures that people will continue to look at this problem with a great deal of interest, because, frankly, in terms of medical research, obesity, diabetes and heart disease -- well, throw in cancer and you have got them all -- that's where the money is. But around the world I think you're going to see much more of it, because the generic combination [by Cipla] that's sold for Africa, that's made in India, is d4T based. And so, yes, I think that in the developing world ...
I think it has d4T and ddI in it.
Oh, that's lovely.
And that combination ...
... is bad.
Yes.
So I think that in the developing world, you're probably going to see a lot more of it. Lots more, because they're giving basically the recipe that's guaranteed to produce it. Again, given how difficult it has been providing drugs in that part of the world, it's a very difficult question. But my own experience at the time was, I'd rather be alive and deal with it than dead. And if that were the only option I had, I would certainly take that medication. I hope that at some point people can offer something less inclined to cause problems.
Right. Would you say that you have learned anything from this whole experience? I mean, you have obviously learned an enormous amount.
Medically, absolutely. I think it's been medically fascinating. In terms of how people see each other, it's something that's not a surprise. People see each other and decide whether something's attractive or not.
I think that a lot of that, frankly -- and in my own case; I'm not blaming people in general -- I think in my own case, in particular, I probably didn't look quite as awful as I thought. But certainly, people could notice there was something wrong. People asked me if I looked sick. One thing that's been surprising is, I've seen people that had lipoatrophy and that I thought were [fine] -- I can think of one case in particular [of] this kid from Toronto I saw [who] got treated with Sculptra. When he first walked in to where he was going to get the treatment, I thought, well, what's he complaining about? He was a really cute little blond kid. You know, what's going on? And then, after he got it, it's like, wow; he was transformed. So sometimes when you meet people who have it, you still think that you don't know what they're talking about when they say their face has changed -- because you didn't know them before. They may look fine, like this kid looked fine. But to them, they don't look like themselves.
I think that's a really profound observation.
And the way that you don't look like yourself is, you look like yourself tired or older. There are no commercials for Revlon where the woman comes out and says, "This product will make you look older and tired."
But you're even saying that, like in the case of this young guy, he looked fine.
Yes.
But to him, he didn't look like himself.
Yes.
And it's more important.
He looked finer when he got fixed. And another guy that I know in Toronto -- the same thing. I met him. He already had mild to moderate facial lipoatrophy. This guy, shall we say, had a film career, and would be considered very, very hot by almost anybody. After he got his face fixed, it was, like, wow. Now I see what you're talking about. You really look better.
Yes.
If you just met someone and they have a mild to moderate case of it, you might almost not even notice it -- but that person does, I can guarantee you.
Yes.
But when it's moderate to severe, everyone notices. And they don't look better. I'm really talking here about people who have a fairly mild to moderate case. Other people might not make an issue of it, but they, themselves, are devastated. Then, since they know that it's probably going to get worse, they are really unhappy.
Right.
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