SF Chronicle: Wiener seeks to ensure coverage for disfiguring HIV side effect

January 31, 2017

By Erin Allday, San Francisco Chronicle

Legislation to be introduced in the state Senate on Tuesday would require insurance providers to cover treatment of lipodystrophy, a disfiguring side effect of HIV that can cause sunken cheeks and eyes, belly fat and other obvious physical changes.

Though it can be physically and psychologically damaging, lipodystrophy is not typically considered a condition requiring care, and treatment is often labeled cosmetic, say HIV patients and their advocates. Sometimes it’s covered by insurance, but not often, and usually only after patients and their doctors file repeated claims.

Lipodystrophy almost always affects people who have been infected with HIV for many years, and primarily those who took some of the earliest drugs to fight the virus. What causes the condition isn’t entirely understood, but it’s thought to be a combination of long-term infection and treatment.

The new legislation, which is being introduced by state Sen. Scott Wiener, D-San Francisco, is expected to be challenged by insurance providers. But Wiener said he’s counting on sympathy for longtime HIV survivors — who have endured decades of physical and mental suffering from living through the worst years of the AIDS epidemic — to help push the bill forward.

“Lipodystrophy impacts a relatively small population, but has dramatic impacts on these folks’ lives,” Wiener said. “It’s not cosmetic, it’s about people’s basic health, including their mental health, and helping them succeed and thrive.”

An umbrella term for fat redistribution, lipodystrophy describes both wasting disease — which causes fat loss primarily in the face, arms and legs — and fat buildup, mostly in the belly and breasts and around the neck and upper back, where it can form a distinctive hump.

Belly fat can contribute to other health problems like heart disease and metabolic syndromes, including diabetes. But the greatest impact may be on people’s mental health. The effects of lipodystrophy are striking and stigmatizing, say HIV experts.

“You walk down the street and it’s like wearing a label on your chest: ‘I’m HIV positive,’” said Dr. Lisa Sterman, who runs a private practice treating HIV patients in San Francisco. “They end up looking like these second-grade stick figures, with a big belly and skinny legs and arms. It just doesn’t look like normal proportions, so you get this very stigmatizing syndrome.”

Treatments for lipodystrophy vary depending on the type and severity of fat redistribution. Facial wasting is treated with fillers that cost up to $1,000 per injection, and can require up to a dozen sessions. Fat deposits in the breasts can be treated with breast reduction surgery, and in the back and neck with liposuction.

Belly fat, though, can be much harder to treat, since the fat is embedded around internal organs and not near the surface. That kind of fat won’t go away with exercise and usually can’t be removed with surgery. But in some people it can be greatly reduced with daily injections of growth hormone, which cost $1,000 to $2,000 a month and must be taken constantly to sustain the fat loss.

Berkeley resident Matt Sharp, a longtime HIV survivor who has had treatments for both facial wasting and belly fat, said he’d “jump at the chance” to get further care. He got financial help paying for the first facial fillers more than a decade ago, and then fought his insurance provider to get treated for the belly fat. But he can’t afford either treatment on his own, and the same is true for most of his peers, he said.

Sharp, 60, was among an army of Bay Area patient advocates in the 1990s who fought for widespread access to early HIV drugs. Access to lipodystrophy therapies wasn’t a priority then as people fought just to survive, he said, “but there is a significant number of older guys who have problems with it now. This is coming along at an appropriate time.”

As longtime HIV survivors grow older, they’re increasingly dealing with problems like isolation and depression. Not feeling good about the way they look doesn’t help, Sharp said.

“It’s just another drag on your life,” he said. “If there was something to help people get this done, they could start to feel better about themselves. It would be a real lift individually and for the community.”

Erin Allday is a San Francisco Chronicle staff writer. Email: eallday@sfchronicle.com Twitter: @erinallday

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