A Walking Advertisement for HIV
“We have the means to make it easier for people to truly live, and I mean live with a capital L, with HIV. Let’s make that happen.”
Andrew Fullem, Director of the Center for HIV at John Snow Inc., has been living with HIV for 17 years. While Andrew now enjoys life, there was a time when he avoided looking at his reflection whenever possible.
Andrew was part of early randomized clinical HIV drug trials. Those drugs had harmful side effects, one of which was lipodystrophy. In Andrew, that meant severe facial wasting, a sinking of the cheek, eye, and temple areas of the face, and loss of fat tissue under the skin.
“You see pictures of yourself 18 months ago and you have a full face, and now you’ve got sunken cheeks and ridges next to your eyes,” Andrew says. “Every time you look in the mirror you see it. So you learn not to look in mirrors. In the men’s room washing your hands, you just don’t look up.”
Andrew attempted to get his insurer, Blue Cross, to cover a treatment which involves using injectable fillers to restore the natural contours of his face. Blue Cross rejected his application, saying it was purely cosmetic. Since he works in the field, he knew that a long-drawn out battle was likely to follow. So he decided to pay for his procedure out of pocket: “I just didn’t have the energy to fight the insurance company.”
Andrew has experienced pointing, commenting, and staring. “In a community where HIV is known about, a person with lipodystrophy is like a walking advertisement for HIV,” he says. “You’re almost a non-person. Before you even have a conversation with somebody, you think that everyone knows.”
Andrew views the insurance denial as discrimination against people with HIV. “There aren’t a lot of other diseases out there that we say, ‘It’s okay to look like you’ve been ravaged and just suck it up and suffer,’” he says. He is also concerned that many people stop taking their HIV medications because they know that insurance companies refuse to cover lipodystrophy treatment.
“If you put someone on a drug whose side effects will lead to physical disfigurement like lipodystrophy, then people are likely to stop taking their medication and will try to manage their HIV in some other way.”
When people are forced to go through the long and laborious process of getting insurance coverage, they can be made to feel like they don’t deserve treatment, that they are asking something special from the system for them, or that they’ve done something wrong.
“We have the means to make it easier for people to truly live, and I mean live with a capital L, with HIV,” says Andrew. “Let’s make that happen.”