Lipoatrophy: A New "Scarlet Letter"
There have been changes reported in body composition among people living with HIV since HAART has become yet another acronym in our lexicon. Highly Active Antiretroviral Therapy (HAART) has been reportedly responsible for increases in fat composition behind the neck ("buffalo's hump") and in the belly and breast area. It has also been associated with decreases in body fat in the limbs -- especially the legs, arms and/or face, as well as the way the body processes fats or lipids. The combination of these conditions is referred to as lipodystrophy. This is especially associated with protease inhibitors and the drug Epivir.
AZT (zidovudine) and d4T (stavudine) are associated with lipoatrophy, which is the loss of normal fat. This more recently coined term, lipoatrophy, actually better describes the condition or syndrome where fat is lost, especially in the face, limbs and buttocks. For many living with HIV, this gaunt look is akin to a "Scarlet Letter."
According to an article in PI Perspective ("Facial and Limb Fat Loss: Lipoatrophy," October 2003), "Lipoatrophy is believed to be caused by long-term HIV infection or as a result of taking certain anti-HIV drugs. Exactly how HIV or medications to treat HIV cause fat loss remains unknown, though some suspect damage to the energy source of cells (called mitochondria) may play a role. Use of Nucleoside Analog drugs (NRTI) are more associated with lipoatrophy. Specific drugs may be particular culprits, such as d4T, ddI and ddC (the 'd' drugs). Lipoatrophy appears to affect White men more than women and African-Americans."
The good news about HAART is that folks are living longer and healthier lives. The bad news, however, is that there is a cost. The jury is still out about whether it is the drugs or the virus itself -- or a combination of both -- that is causing this "drawn" look. Where there were once nice, full cheeks, there is now a sunken and somewhat prematurely aged look among long-term survivors. In the last few months, this subject has been brought to my attention via telephone inquiries and conversations with volunteers who have chosen to do something about their appearance.
Many physicians concentrate on the physical health of their patients with HIV, which they are taught to do and is most appropriate. It is sometimes difficult, though, for some health care professionals to understand the "quality of life" issues of an otherwise stable person living with HIV, especially when it involves physical appearance. At times, these complaints about physical appearance can be dismissed as sheer vanity. People living with HIV who are otherwise healthy but who are avoiding social contact or pursuing new challenges have a right to look at why they are behaving and feeling that way. Vanity aside, looking ten years older than one's age does affect every other aspect of a person's life -- whether admitted or not.
In a recent conversation with a volunteer, "Adam" (not his real name), who I have always viewed as attractive and vivacious, confessed to me that he realized that he was becoming aware that other gay men "overtly" averted their eyes from his. This called his attention to "something going on," as he put it. "Adam" did some research on possible treatments for lipoatrophy. During a recent conversation, he said, "A lot of my decision was based on trust in my dermatologist, who is so highly regarded in his field, but also in the HIV community. And after consulting with the practitioner who would administer the product (as well as other products), I was convinced to use Radiance (technically: calcium hydroxylapatite [CaHA], microspheres suspended in an aqueous polysaccharide gel, similar to Coapitite)."
He goes on to say, "I also want to emphasize the importance of not only carefully selecting the product and procedure one uses, but also the practitioner. Many of the negative things one reads about cosmetic surgery as a whole is not about the product, but rather the product being administered poorly by someone not skilled or qualified. This particular procedure really requires an artistic eye, which is the reason my dermatologist doesn't administer it. I've listened to several reports recently on Radiance and the misinformation is astounding. I think it's important (and this is my bias) to point out that my practitioner was not a physician, but a nurse who is highly trained in the field of cosmetic surgery and actually travels around the country training plastic surgeons in the procedure of Radiance."
Concerning his post-procedure experience, "Adam" concludes by saying, "The recovery time from the procedure was 'zip.' I had no bruising or swelling and attended a dinner party that evening. Of course, I was careful to apply ice and began taking an herb prior to the procedure and afterwards. I'm still very pleased with the decision and I have referred others, who also have just raved about their results."
There are a few doctors in metropolitan areas who are using this as a treatment for lipoatrophy. Reportedly, the procedure lasts for about five to nine years. The cost is from as low as $800 to as much as several thousands of dollars, depending on where the procedure is done.
Another volunteer at ASP, "Stephen" (not his real name), had a different procedure done. "My approach to lipoatrophy was more invasive than 'Adam's,' as I had a fat transfer. This was expensive, but I feel it was worth it," he said. "I didn't want to look like an 'AIDS victim.' The procedure required surgery as well as anesthesia. As I was nearing 50 years old, I also treated myself to a rhytidectomy (the removal of excessive skin from the neck and jowl areas). The total cost was about $8,000. Complete recovery took several weeks." "Stephen" concludes by saying, "Two years later, when I look in the mirror, I don't see myself with AIDS and I think I look much younger and healthier."
In an interview last year with Dr. Gottfried Lemperle from San Diego, Nelson Vergel, whose Web site www.facialwasting.org is listed below, asked the question, "What is the criteria for a good implant for facial lipoatrophy?"
Dr. Gottfried replied, "For facial lipoatrophy, there are solid and injectable implants commercially available. The solid ones -- from polymerized silicone, Teflon, hydroxyapatite or polyethylene -- can be cut to suitable shapes and implanted on the malar bone, maxillary sinus and mandibular arch. The center of the cheek, the atrophied Bichat's fat pad, can be augmented with an oval-shaped implant from soft silicone, which was the first-line choice before the era of permanent soft tissue fillers.
"The ideal injectable dermal filler substance must be biocompatible and safe, stable at the implantation site, retain its volume and remain soft and pliable, should not dislocate by gravity, and evoke minimal foreign body reaction."
In this same interview with Nelson Vergel, when asked about promising new treatment in the pipeline, Dr. Gottfried replied,
"For more than 20 years, there is only one product approved for soft tissue augmentation in the U.S., and that is bovine collagen (Zyderm® and Zyplast®). Hyaluronic acid products (Restylane® and Hylaform®) are in clinical trials and may be approved soon. Both are, however, not longer-lasting than collagen, have similar side effects and can cause late granulomas [cyst-like eruptions ] like collagen. Polylactic acid microspheres (NewFill®) are in clinical trials for facial lipoatrophy, but are not longer lasting than collagen.
"Scientifically, Artecoll®, which consists of microspheres sieved from bone cement (polymethylmethacrylate) and suspended in collagen is the best and longest-lasting proven materials in aesthetic surgery, and therefore my first choice for the treatment of wrinkles and facial lipoatrophy. I would switch tomorrow to a better injectable material, if there were one."
Let me reiterate that neither this publication nor I make recommendations of or for any medical treatment or procedure. Please discuss any decisions concerning your health care with your provider. If you don't feel heard or want a second opinion, continue to gather your own information until you have enough to decide what is best for you.
There are several resources available to help you gather information regarding the treatment of lipoatrophy. There is a new binder in our Treatment Resource Center here at ASP which we invite you to peruse. Also, you can call a peer counselor for information about plastic surgeons and clinics in the Atlanta area who specialize in treating lipoatrophy.
Following is a list of resources, which is by no means exhaustive:
The FDA Has Accepted the Filing for an Injectable Poly-L-Lactic Acid Called "Sculptra" to Treat Facial Lipoatrophy (February 5, 2004)
This article was provided by AIDS Survival Project. It is a part of the publication Survival News.