Ever since it first began appearing with some regularity in people with HIV in the mid 1990s, lipoatrophy has earned its well deserved reputation as the Scarlet Letter of HIV, also known as "the look." Lipoatrophy is the loss of subcutaneous fat under the skin, most notably in the face, but also in the butt, arms, and legs, and is thought to be part of a larger syndrome called lipodystrophy, which is the redistribution of fat in the body and can include buffalo hump, enlarged breasts, and visceral fat in the abdomen.
It can sometimes be extremely disfiguring, and almost always causes some level of emotional distress, even depression, and oftentimes self-imposed isolation in those who suffer from its stigmatizing effects. It can also affect adherence to HIV medications, and deter people from starting treatment in the first place.
The cause of lipoatrophy has been linked to certain HIV medications, most notably d4T (Zerit, stavudine) and to a lesser extent AZT (Retrovir, zidovudine) and ddI (Videx, didanosine); other HIV meds, including some protease inhibitors; and it has also been linked to HIV itself. D4T is rarely prescribed in the U.S. anymore, but is still widely used in many developing countries due to its availability and low cost. While we don't see as many new cases of lipoatrophy here in the U.S. with those who have since initiated therapy using newer and less-toxic antiretrovirals, it is still prevalent among those using d4T in developing countries, although d4T continues to fall out of favor with providers and is used less and less as more and newer drugs become available in those regions.
For those who have been treated with some of these older, more toxic drugs (when that was all that was available), many have developed the sunken cheeks, veiny arms and legs, and loss of fat in the butt to the point where it is uncomfortable to sit for more than a short period of time. Once you discontinue taking a drug like d4T, you can sometimes stop the lipoatrophy from progressing any further, but it can take a long time to see any reversal of its effects, if ever, so some people will turn to using facial fillers to replace the fat in the face that has been lost.
I have written several articles in the past, for both Positively Aware and TheBody.com, about my experiences dealing with the physical and emotional aspects of having lipoatrophy and its stigmatizing effects, as well as my experience using a facial filler, Sculptra (known then as New-Fill) back in 2001. The results I saw in 2001 were only moderate, and disappeared within about six months to a year, mainly due to the fact that I only received two treatments because that was all that I could afford.
In the fall of last year, I decided to revisit the idea of receiving another round of facial filler treatments, and I went to see Dr. Dan Berger of Northstar Medical Center in Chicago for a consultation. Dr. Berger, who also writes for Positively Aware, and has over 12 years of experience providing Sculptra, recommended that I undergo five or six "sessions" due to the level of facial lipoatrophy that I had. Facial lipoatrophy is graded on a scale of 1 to 5, with 1 being mild, and 5 being severe -- mine was severe, between grade 4 and 5. During each session, I was to receive injections of two vials, or one "kit" of Sculptra, one vial for each side of my face.
Sculptra, or injectable poly-L-lactic acid, is one of only two FDA approved treatments in the U.S. for HIV-associated facial lipoatrophy, the other being Radiesse. Both of these injectables work by being absorbed into the body and stimulating the growth of the body's own collagen, so they are not permanent fillers. There are other fillers available (see table) that are also used for facial lipoatrophy, but they are permanent and can sometimes cause serious side effects and allergic reactions (as can both Sculptra and Radiesse). Only one is FDA approved (Silikon 1000) and none are approved for use in HIV. Anecdotally, I've heard of people who have used them and are pleased with their results, but personally I did not want to use something that was going to be permanent.
I felt comfortable using Sculptra because I had used it before and I already knew what to expect, but also because I would be getting six treatments instead of two, so I was hoping to experience better results this time around. Plus, as Dr. Berger explained it, after getting six treatments, my face would never go back to the way it was before receiving Sculptra, and I would only require a "touch-up" session once a year.
The cost of Sculptra is expensive, running about $1,700 for one kit (two vials), or $850 per 367.5 mg vial, which also includes the cost for the session -- doctor, time, and procedure. Most insurance companies still consider its use to be a cosmetic treatment and are therefore likely to refuse to cover the drug as well as the procedure. However, if you are initially denied, you should appeal and see if you can get them to recognize it as a medical necessity (which it really is). Recognizing the high cost and lack of coverage by most plans, and the great need of those who have this condition, the manufacturer created a patient assistance program (PAP) for people with HIV that assists in helping to pay for Sculptra. However, a new company (Valeant) recently took over the PAP, and it now only covers those with up to $61,940 in annual income, and provides just two kits plus one follow up kit after a two-year period. Under the PAP Sculptra is free for those with an annual income less than 200% of the Federal Povery Level ($22,340 for an individual, slightly higher based on family size and in Alaska and Hawaii), and then on a sliding scale above this amount and up to $61,940. The staff at Northstar was very helpful in getting me set up with the PAP, and in November of 2011 I received my first treatment.
It is very important that the physician who is performing the procedure be trained specifically in the use of Sculptra and how to properly inject it, which requires a certain threading, or tunneling, technique. According to the package label, "during the first injection session with Sculptra, only a limited correction should be made. The contour deficiency should be under-corrected, never fully corrected or overcorrected (overfilled) during any injection session. Re-evaluate the patient no sooner than two weeks after the injection session to determine if additional correction is needed."
Each session only takes around 40-45 minutes, and it would begin with Dr. Berger marking my face with a white pencil to guide him while injecting the Sculptra. Starting with ice packs on my face to minimize the swelling, and then a local anesthetic to numb my face, he would begin injecting the filler into different areas of my face, using his hands to help "move" the filler into place once it was injected. Even with the local anesthetic, I experienced a good deal of discomfort when the needles went in and he tunneled, especially during the first couple of sessions when there was little fat in my face for him to work with. But the discomfort was only temporary, and when the session was over, I was left with some temporary swelling, a few marks, and on occasion, some slight bruising, but the swelling went down in a few hours and any marks or bruising were gone within a day or two.
Following each session, and according to the package label, I was to "massage in a circular fashion the treated areas for five minutes, five times per day for five days," in an effort to stimulate collagen growth and "even out" the facial filler under my skin. I went back for five more sessions, one every four weeks.
|Face Off: Commonly Used Options for HIV-Related Facial Lipoatrophy|
|Non-permanent; 3-7 or more sessions needed.||FDA approved.||Patient Assistance for product only (under $61,940 yearly income): www.needymeds.org/papforms/sculpt1039.pdf. Labor cost average $400 per session. Full price: $1,100 per session for product.|
Calcium hydroxylapatite (CaHA) microspheres
|Non-permanent; 2-3 or more sessions needed.||FDA approved.||Patient Assistance available: www.radiesse-fl.com/Physician-section/Patient-access-program/. Full price: $1,200 per session.|
|Permanent; 4-6 or more sessions needed.||Off-label use; FDA approved for intraocular injections to treat CMV-related retinal detachment.||No Patient Assistance Program. $400-800 per session, depending on the physician.|
|Permanent; 1-2 sessions needed.||Not FDA approved. Available in Mexico and Brazil. American version Artefil is too expensive for the amount required.||$2,000 average cost for total reconstruction. Patient assistance in Tijuana: www.MedicalPMMA.com.|
Patients are advised that after the initial treatment and within a week the effects will completely disappear, and the contour of the face returns to how it was before. With each subsequent session, however, you begin to see the cumulative benefit of each successive treatment, and the effects are more noticeable and last longer. By the third or fourth treatment, I was really looking more and more like my old self, and couldn't wait for each following treatment, pain or no pain!
Treatment advocate Nelson Vergel warns that not everyone experiences the same level of results. "Some people in my online discussion group, especially those with moderate to more advanced cases of facial lipoatrophy, have complained of poor response with Sculptra after spending a few thousand dollars for several sessions that did not end up restoring their faces." Vergel, founder of FacialWasting.org and pozhealth at yahoogroups.com, says that some of them end up getting silicone microdroplets in the U.S. or flying to Mexico to get permanent options like PMMA (see table).
Of course, nothing is perfect, and there are side effects associated with Sculptra. The most common side effects reported in studies are bruising, swelling, discomfort, and rash, but these typically resolve within a few days to a few weeks. There is a "device-related adverse event" called an injection site subcutaneous papule, which is a small lump or bump under the skin, the onset of which can occur anywhere from a few weeks to a few years afterward. I experienced several of these lumps, one under my left eye, and two under my right temple (sometimes if you get these papules you can feel them under your skin, but they are barely noticeable -- other times they can be more visible). There are also more serious adverse events that can potentially occur, so be sure to read the full package label.
In the end, for me the few small lumps, the cost of treatment, and the pain were all a small price to pay for what it has ultimately done for my self-esteem. I feel better about myself overall, because I look healthier. The effect for me was subtle, most people didn't really notice or say anything, other than "you look rested" or "you look really great!"
I realize that I am very lucky to have a decent-paying job that has afforded me the ability to benefit from this treatment, and that many others are not as fortunate. I also realize that even though the HIV treatments available today are much less likely to cause facial lipoatrophy (if at all), the fear of developing facial lipoatrophy still may deter some people from ever starting treatment, or may cause those who are on treatment to be less than fully adherent to their regimen. While Medicare finally agreed to cover the procedure a few years ago, the amount that they reimburse is well below what providers charge. That is why I plan to continue to advocate for insurance companies, Medicare, and Medicaid to cover this procedure at a reasonable amount, much in the same way that breast reconstruction is provided to women with breast cancer who have undergone a mastectomy. The benefit of these treatments is vital to the psychological well-being and quality of life for so many people living with HIV who are affected by this condition.
Go to www.sculptra.us for more information. For a list of providers trained in the use of Sculptra, visit www.sculptraaesthetic.com.