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Lipodystrophy can be defined as a sequence of bodily changes in which fat is redistributed, and it has become a major cause for alarm for men who worry about looking like they have HIV. Fat can accumulate on the back of the neck (sometimes referred to as the Buffalo Hump) or around the midsection, causing a protruding belly (known as “Crix Belly” after the protease inhibitor Crixivan). Another upsetting bodily change is called lipoatrophy. This involves fat loss in the cheeks and temples, which results in a characteristically gaunt appearance. Other signs of severe fat loss may be seen in the arms and legs, which can result in what appear to be excessively ripped muscles and prominently visible cable-like veins.
“I can deal with the virus,” said Matthew, a recent seroconverter.
“I just don’t want to look like I’m sick!”
Matthew is not alone, and his fear is shared by many men—especially those with longstanding HIV. Even after surviving the worst of the epidemic, the potentially disfiguring effects of HIV are all too real for most men. They can be seen every day in the faces and bodies of HIV infected individuals who feel as if they wear these changes like a Scarlet Letter.
“I used to love the summer,” said Tom, who has been struggling with lipodystrophy for ten years. “When I go to the beach now, I feel like everyone is staring at me.” Tom has resorted to wearing baseball caps to distract attention from his hollowed cheeks and adamantly refuses to wear short pants.
At the onset of this new turn of events, clinicians scrambled to figure out what was causing lipodystrophy. Was it HIV or something else entirely?
Studies show that Lipodystrophy Syndrome is linked to changes at the cellular level. That means that the virus itself, over time, can cause changes leading to insulin resistance and mitochondrial toxicity, which results in both fat loss and redistribution. Interestingly, certain antiretrovirals—the same medications we use to treat HIV—can also cause these changes. Older drugs, especially ones in the class known as protease inhibitors, have been linked to lipodystrophy as well as some nucleoside analogs, like stavudine (Zerit), didanosine (Videx EC), and retrovir (AZT). It is estimated that roughly 80 percent of HIV positive men on cocktails containing one or more of these medications has lipodystrophy. Risk also increases with older age, longer lengths of treatment and weaker immune systems.
In light of these facts, doctors made swift changes in how they treat HIV, avoiding these medications and switching patients off them whenever possible. Of course changing meds does not reverse lipodystrophy, but it does prevent if from getting worse.
The good news is that for recently diagnosed men, avoiding these older drugs will likely slow the progression of lipodystrophy. In fact, many of the newer drugs, especially those developed in the last five years have lower rates of lipodystrophy.
But what do you do if you are already dealing with lipodystrophy or lipoatrophy?
Initially there were few treatments available to treat facial wasting and all involved injecting various products directly into the face called, facial fillers. One of the earlier products—silicone—was used despite not being FDA approved for facial wasting. The major concern with silicone is that its effects are permanent and the product itself has the potential to become encapsulated under the skin where it forms tumor-like lesions.
Currently, there is a line of facial fillers approved by the FDA. Sculptra, a poly-L-lactic acid, has proven to be very successful with amazing results. Like other fillers (including Radiesse and Restylane), all require multiple treatments to get the desired effect. Likewise, these fillers are temporary and last several months. For a more complete explanation, consult with a dermatologist or plastic surgeon. The treatment for facial wasting is considered cosmetic and can be quite expensive. Before committing yourself to one of the available treatments, find a doctor that comes highly recommended and one that has a great deal of experience treating HIV facial wasting. If you are going to make the investment, do the research. Also remember that these treatments don’t fix the underlying problem.
As for fat redistribution, increased visceral fat can be a significant problem not only for cosmetic reasons but also because increased abdominal girth can be associated with gastroesophageal reflux and respiratory problems. Several studies looking at reducing visceral fat include the use of recombinant human growth hormone since this product has known lipolytic properties. This means it literally breaks down fat. Currently, Serono, the makers of Serostim, a brand of growth hormone, say that their product reduces visceral fat. Serono is working with the FDA to finalize plans to obtain the indication for treatment of lipodystrophy. Currently, Serostim is not approved for this treatment and costs roughly $1,700 for a one-week supply.
The impact of lipodystrophy and lipoatrophy on the HIV community has been devastating. The emotional and psychological implications are extreme with men experiencing depression and anxiety associated with the change in body image. It is even more difficult for many to comprehend that the treatment for HIV has led to the development of these bodily changes. However, it is important to remember the positive affects antiretrovirals have had on prolonging lives. If you have lipodystrophy, know that you are not alone, and consult with your doctor about treatment options.
This page sponsored by Gilead Sciences Inc.
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Instinct Online 
written by CNR on June 11, 2007
I had what I had been told was a moderate case of facial wasting. The way I saw myself was much more severe as we are our own worst critics. I lived with the daily social stigma of the visible signs of a debilitating disease. I found an AMAZING doctor in NYC, Dr. Gervais Frechette. Over the course of severa l Sculptra treatments I have my face back and I have my life back! It's not an inexpensive procedure, but it is comparable to other fillers you might consider AND there is a Patient Assistance Program to offset the cost of the product if you qualify. Even if you don't go to Dr. Frechette (although you should), do the research and/or ask your doctor about Sculptra--you'll be glad you did!