I’m Not Living A Life That I Should Be Living

“I can’t stress enough how devastating lipodystrophy is and how much your life changes because of it.”

Mark forces himself to leave his apartment in Boston at least once a day, because he knows it’s unhealthy to live like a recluse. Usually, he heads to a nearby Dunkin’ Donuts for coffee. But his 10-minute walk can feel like a 10-mile journey because of the way people react to Mark’s appearance: the surprised stares of passers-by, mocking exclamations from teens, the curious child who asks, “Mommy, why does that guy have such a big head?”

Every lingering look, each overheard comment lands like a punch in the gut. “It’s so discouraging,” Mark says, “when it’s such an effort to get out of the house and that’s what I go out and hear. It just makes me want to go home again and not deal.”

For the past 10 years, Mark has suffered from lipodystrophy, a metabolic complication of HIV infection and/ or HIV medications, which creates abnormal fat distribution in the body, causing disfiguring body shape changes. Because of lipodystrophy, Mark has a large fat pad on the back of his neck (commonly called a “buffalo hump”), significant fat around his neck and underneath his chin – giving his head an elongated appearance – and significant fat accumulation in his torso. His cheeks and temples are sunken from the loss of fat in his face; his arms and legs are stick thin.

Mark’s lipodystrophy has also led to chronic depression.

“I’ve described myself as a monster,” says the Canton native, who earned an art degree from UMASS Boston. Glimpsing his shadow or his reflection in a window, he says, is “almost sickening.” Feelings of shame and isolation have led Mark to contemplate suicide. He currently attends a support group for HIV-positive men, which helps him cope better with his condition.

Aside from the emotional toll, Mark suffers physically. His buffalo hump (or dorsocervical fat pad, in medical parlance) restricts the movement of his head such that he can’t look over his shoulder and prevents him from sleeping comfortably. He was recently diagnosed with two compressed discs in his spine in the area of the hump. The disproportionate concentration of weight in his torso, neck and back causes his hips to ache when he walks for extended periods of time. He stopped volunteering at a senior lunch program – one of his few social outlets – because he couldn’t manage physical demands like setting up and breaking down tables.

Though he’s just 57, living with lipodystrophy makes Mark feel “like I’ve aged beyond my years.”

Despite the debilitating effects of his condition, Mark has had difficulty accessing treatment. Lipodystrophy is commonly treated with liposuction, but the majority of health insurers refuse to cover it because they see it as cosmetic and not medically necessary.

Some years ago, MassHealth denied Mark coverage for a liposuction procedure to reduce the effects of his lipodystrophy. Subsequently, his doctor advised him to visit a local hospital emergency room and complain that his condition restricted his breathing, thereby creating a medical emergency. Mark then received a minor liposuction procedure from an ear, nose and throat surgeon that was covered by his insurer and improved his appearance slightly.

A few years later, he arranged to have another liposuction surgery from a doctor who demanded the $3500 payment up front, anticipating Mark’s insurance wouldn’t cover the procedure. Living on a fixed income, Mark borrowed the money from his mother and brother. Ironically, MassHealth ultimately approved payment for the procedure.

Mark is now insured through Medicare and Blue Cross Blue Shield’s Medex. Medex, despite his doctor’s recommendation, has twice denied Mark coverage for Egrifta, an FDA-approved medication that reduces excess abdominal fat, on the grounds it is too expensive. “I really didn’t want to pursue it after that,” he says of further appeals for the medication. “I just didn’t feel that it was worth it.”

Despite the difficulty he’s had accessing treatment, Mark thinks a lot about how life would improve if his lipodystrophy was alleviated. He’d hop the train to visit his brother and nephew in New York and spend Thanksgiving with his large extended family – things he’s avoided for years now. He’d go to the movies and visit his favorite New England places. He wouldn’t feel ashamed to be in public because of how he looks. “I feel such a burden would be lifted from me,” Mark says.

“I can’t stress enough the fact of how devastating lipodystrophy is and how much your life changes because of it. I don’t think I’m alone in that,” he adds. “I know how much I stay in and I know how much of an effort it is just to drag myself outside. And it’s just—I’m not living a life that I should be living. I’ve become isolated.”