The Bay Area Reporter - May 8, 1998
Don Howard, ACT UP/Golden Gate Writers Pool

Three weeks ago John had more than a half liter of fat removed from the hump, in a liposuction surgery paid for by his Health Maintanance Organization (HMO).

Like John, a growing number of people with HIV are reporting disturbing changes in the distribution of fat in their bodies - a syndrome now being called lipodystrophy. These changes include the redistribution of fat from the face, arms, and legs to the belly, upper back, or (in women) breasts. No one knows what causes the condition or the magnitude of the problem. But many researchers think it is an emerging side effect of new combination anti-HIV drug regimens.

The first reports of the condition surfaced in people who gained weight in their midsections after starting protease inhibitor therapy ("protease paunch"). Other people have developed fatty deposits on their upper backs ("buffalo humps"). No matter what the cause, patients like John are so disturbed by the changes in their appearance and the difficulties that can result from these fat deposits that they seek treatment to have them removed.

John is a long-term survivor of HIV and dates his infection back as early as 1979. He is 49, and has been on anti-HIV drug therapy, starting with AZT, since 1988. At their lowest, his T-cells fell to 39. In 1996 he started a series of drug regimens that included a protease inhibitor, and over time he has been on all the approved protease inhibitors. He now has a viral load of about 30,000 and his T-cells have risen to 400 and remained stable. John has experienced weight loss during the course of his infection, and lost 35 pounds before starting protease inhibitors. He has taken steroids (Oxadralone) for only three months in 1996. Since his bout with weight loss, he has had to consume 6,000 calories and 160 grams of protein per day to maintain his weight.

He first noticed that a hump on his back and neck was developing at the end of 1996. "My neck was thickening and I was delighted. I thought the weight lifting was paying off," he says. But by July of 1997, he noticed that the enlargement of his neck and back was becoming asymmetrical, and by November of 1997 he was clearly developing a flabby growth. So far, lipodystrophy does not appear to be life threatening but, as John found out, it can cause serious pain and discomfort. John's hump caused discomfort including migraines, neck pain, and lower back pain, and made it difficult for him to sleep. By January he realized that something needed to be done; during one year, his neck had expanded from a size 15 to a size 24.

Drug-related or virus-related?

Although researchers are documenting a growing number of cases like John's, their reports often leave more questions than answers. Estimates of the number of people experiencing lipodystrophy range anywhere from 11% to 64%, based on the definition of the condition and the population studied. Cases of protease paunch, buffalo hump, and breast enlargement are less frequent than the loss of fat on the face, arms, and legs. Current thinking among the researchers is that lipodystrophy seems more common in older patients who have lived with HIV for some time, leading some to speculate that the number of cases may increase as people with HIV live longer.

Most - but not all - of the documented cases of lipodystrophy have been in people taking protease inhibitors. One of the protease inhibitors, Crixivan, was originally suspected to be the culprit, but cases have now been documented in patients taking other protease inhibitors. One group of Australian researchers has theorized that the protease inhibitors disrupt the body's normal processing of fat. They have found that part of the protease enzyme of HIV is closely related to a protein which is a scavenger of lipids. They think that the protease inhibitors may be interfering with this protein and leading to the unusual accumulations of fat.

Other researchers have evidence that protease inhibitors may not be the cause. A study at San Francisco General documented eight cases of buffalo humps between June 1995 and October 1997. All of the patients were taking anti-HIV drug therapy, but only four of the eight patients were on regimens which included protease inhibitors. (There are other anecdotal stories of cases of lipodystrophy in years before anti-HIV treatments.) San Francisco General and Gladstone Institute at UCSF are now cooperating to research potential causes of lipodystrophy. One theory being pursued is that the lipodystrophy is related to the virus and not the drugs. Researchers are testing whether one of the proteins manufactured by the virus may influence the body's response to hormones and growth.

In consultation with his doctor, John decided to have his hump removed by liposuction. His HMO (Kaiser) agreed it was necessary and paid for the surgery, which was done on an outpatient basis. John has come in contact with others across the country who are experiencing different forms of lipodystrophy. His advice is to "confront your physician if you think you are having a problem. I have learned from men elsewhere in the U.S. that their physicians generally don't want to deal with this. They seem to disregard the condition as food- or age-related. I am grateful that my own physician immediately recognized my condition and responded to my concerns about pain and discomfort." John's surgeon "thinks that he got it all." The migraines have stopped and, despite some bruising and tenderness, John was able to restart his workouts five days after his liposuction.

Dr. Richard Glogau, a San Francisco dermatologist, has seen a couple dozen cases of facial wasting and two or three paunches in his practice. "We have attempted fat grafting [transferring fat from one part of the body to another] for facial wasting, but patients often don't seem to have much in the way of donor fat. We have been more successful with SoftForm, which is Collagen Corporation's 'kinder, gentler' Gore-Tex implants. They run $2,500 to $4,000 depending on how many pieces need to be placed in the nasolabial [cheek] fold areas. Torso liposuction [abdomen, flanks, etc.] usually runs $2,000 to $3,000 depending on size and number of areas treated."

Although some paunches have been treatable by liposuction, the fat must be just below the skin. When the paunch is within the abdominal wall, liposuction is not an option. A word of caution: although Kaiser paid for John's liposuction, insurance companies may not cover the cost of similar procedures. The liposuction of a buffalo hump is estimated to cost between $2,500 and $3,000.

Whether the treatment involves facial implants or liposuction of a paunch or hump, Dr. Glogau thinks that the potential risk of these treatments in HIV-positive people is low. "In general," he says, "people with HIV who have high T-cell counts don't seem to behave any differently than other patients."

John suspects that his lipodystrophy was drug-related, but despite the problems he has had, he would pursue the same aggressive course of treatment: "I think I am alive today because of early treatment." He continues on his current drug treatment regimen. "My overall quality of life is great. This latest condition was an inconvenience which could be addressed. As long as I can continue to live a high quality life, I will seek any available HIV therapies which show promise."

Photo Caption: John's neck had grown to size 24 before he had over a half liter of fat removed from his neck and back by liposuction.

ACTion UPdate:

Are you experiencing changes in your appearance due to HIV?

ACT UP/Golden Gate is trying to determine how many people with HIV may be experiencing fat redistribution. Please call our lipodystrophy hotline at (415) 281-0680 if you think you are experiencing any of the following symptoms:

Thinning of your face, arms, legs, or buttocks

Increasing waist size

Fat growth on your back and/or neck

Breast enlargement

You can leave an anonymous message, or leave your name and phone number to get further information as it emerges.
980508
BR980502

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