A Life Curtailed

“I used to be a very social, very outgoing, active person. And now I find myself just isolating because of the lipodystrophy.”

“It’s a win-lose situation for me,” says Joe Clement of living with the extreme side effects of the HIV medication that is keeping him alive. “My health is good, but I have what I call this ‘morphed image’ when I look at myself in the mirror. “I can’t stand it.”

For the past 16 years, the 57-year-old artist has been living with lipodystrophy, a metabolic complication of HIV infection and/ or HIV medications that creates abnormal fat distribution in the body, causing disfiguring body shape changes. About a year ago, Joe started a medication regimen that caused him to gain 40 pounds in just two months. Lipodystrophy has so altered Joe’s appearance that old friends sometimes don’t recognize him. Once a man with a healthy self-image, Joe now avoids appearing in family photos and feels defensive about his appearance on the rare occasion he goes out. “When I meet people,” he says, “I want to say, ‘I don’t really look like this. It’s not me.’” Someone close to Joe once referred to him as Quasimodo; he has likened his appearance to the cartoon ogre Shrek.

In the past, Joe has stopped taking his HIV medication so that he could lose the excess weight and feel better about himself. But he knows that negatively impacts his health in other ways.
Joe’s lipodystrohy has caused a “buffalo hump,” or dorsocervical fat pad, to grow on the back of his neck. There is significant fat accumulation all around his neck and under his chin, making his head appear abnormally large. There is excess fat on his back and abdomen. His lipodystrophy has also caused what is known as “facial wasting,” or a loss of fat in his cheeks, making his face gaunt; and abnormal, excessive fat loss in his buttocks, arms and legs (symptoms known as lipoatrophy).

Joe suffers from headaches, disc degeneration, difficulty sleeping and chronic back and neck pain because of the buffalo hump. It also prevents him from laying on his back and restricts his ability to turn his head. Because of the extreme fat loss in his buttocks, sitting in certain chairs – like seats on the T – causes uncomfortable numbness. Where he once enjoyed running, the abnormal fat distribution in his body now makes it too painful.

Lipodystrophy has also caused Joe to become depressed and withdrawn. In September 2011, despondent over the end of his 14-year relationship and his fear that he’d wind up alone because of his appearance and his HIV status, Joe attempted suicide. “I tell my family, I’ve been on this planet longer than I have left on it,” he says, “and it would be nice to just maybe enjoy the company of somebody, before anything should happen.”

While he takes care of himself – abstaining from alcohol, meeting with a therapist, and attending an HIV support group, Joe’s lipodystrophy remains debilitating. “On a daily basis, I really don’t go too far from the house because I just don’t like the way I look,” says Joe, who last year returned to his native Lowell after years as a “gentleman farmer” in New Hampshire. “It’s uncomfortable and it makes you feel bad when you go out in public,” he says of lipodystrophy.

With the support of his medical and mental health providers, Joe sought liposuction surgery – a common treatment for lipodystrophy—in the hope of regaining a more fulfilling and productive life. MassHealth refused to cover the surgery, however, as do most health insurers, on the grounds that it is cosmetic and not medically necessary.

He is now trying to get Medicare coverage for the surgery, but the program does not give prior authorization for procedures. Because of that, Joe’s surgeon has asked him to sign a waiver accepting financial responsibility for the surgery. But should Medicare deny coverage, Joe does not have the financial resources to cover the $8,000 cost of the surgery.

Having suffered as long as he has with lipodystrophy, Joe is perplexed and frustrated at the barriers to effective treatment. He believes that health insurers should cover treatment for lipodystrophy in the same way they cover breast reconstruction surgery for women who have mastectomies because of breast cancer. “I used to be a very social, very outgoing, active person. And now I find myself just isolating because of the lipodystrophy,” says Joe.“There’s no way I can hide my head.”