Updated March 24

Read in the Boston GlobePatients, advocates hope to ease a visible burden

GLAD testified March 5 in support of a Massachusetts bill requiring insurance coverage for the treatment of lipodystrophy, a debilitating and disfiguring side effect of HIV medications. The disfiguring effects of lipodystrophy are so severe that many people with the condition do not leave their homes.

“A Bill to Require Insurance Coverage for Treatment of a Debilitating and Disfiguring Side Effect of HIV Medications,” sponsored by Rep. Carl Sciortino, was heard before the Joint Committee on Financial Services.

Lipodystrophy is the abnormal redistribution of fat throughout the body, causing a range of bodily changes including “buffalo hump” (an abnormal fat growth on the neck) and “horse collar” (abnormal fat growth on the front and side of the neck and under the chin), and facial wasting.

People with lipodystrophy can become socially isolated, depressed, and suicidal. Some stop taking their medications, which can lead to the development of treatment-resistant strains of HIV. Many experience pain as well as spinal, postural, and mobility issues. The common treatment is liposuction, but most insurers deny coverage, deeming the treatment “cosmetic.”

“It is unacceptable in 2014 that insurers and our state Medicaid program deny medically necessary health care to people with HIV,” says Bennett Klein, GLAD’s AIDS Law Project Director. “Insurers’ refusal to treat a health condition that disproportionately affects gay men, IV drug users, and people of color is discrimination plain and simple.”

“I am proud to be the lead sponsor of this bill that ensures that a small population of HIV-positive individuals who suffer from the debilitating condition of lipodystrophy receive appropriate insurance coverage for necessary treatment costs,” says Representative Carl Sciortino. “Treatment for lipodystrophy is not cosmetic and failing to address this issue now will cause greater costs for Massachusetts in the long run.”

Also testifying in support of the bill were a number of people living with lipodystrophy, doctors who treat people with HIV, and AIDS service providers.

GLAD has convened the Treat Lipodystrophy Coalition (TLC), a group of service providers, public health officials, and people living with HIV, to support passage of the bill.  The TLC has produced a storybook featuring the struggles of individuals living with lipodystrophy, which can be downloaded or read online.