Many long-term HIV survivors who took highly toxic medications ended up receiving a condition known as lipodystrophy, which causes changes in body fat distribution (mainly in the belly and upper back).
For most people, lipodystrophy significantly effects their physical health and psychological wellbeing. But unfortunately, insurance plans view surgical plans to correct the condition as “cosmetic,” so it is never covered — until now.
Senator Scott Wiener (D-San Francisco) introduced an Equality California sponsored bill called HEAL (“Help End Antiretroviral-related Lipodystrophy”) that will require insurance companies and government programs to cover medical treatment for those suffering from the condition.
“The early generation of anti-retroviral medications saved thousands and thousands of HIV survivors’ lives, yet they scarred many survivors with the disfigurement caused by lipodystrophy,” Senator Wiener said in a statement. “Many long-term HIV survivors continue to struggle with this side effect, with both physical and psychological ramifications. The failure of our private insurance and public health programs to cover lipodystrophy correction surgeries for long-term HIV survivors is both unacceptable and discriminatory. It’s time to ensure that these long-term HIV survivors receive the healthcare they need, including correction of this debilitating health condition.”
Lipodystrophy was a major side effect from early antiviral medications in the 1990s. It results in either an abnormal loss of fat, or an abnormal accumulation of fat. And it manifests itself significantly, causing pain, headaches, restricted movement, and sleep deprivation in many cases.
Current HIV meds do not cause lipodystrophy, yet many HIV-positive people stop taking antiretrovirals out of fear of getting it. Additionally, men and women have become depressed because of disfigurements in their bodies due to the condition, so they’ll isolate themselves from the world.
As of today, insurance companies do not classify breast reconstruction and testicular replacement in cancer patients as “cosmetic,” and they’ll usually cover these types of procedures, even though a procedure to treat lipodystrophy is quite simple — a basic form of liposuction to remove the accumulated fat.
“This legislation will have a real and immediate impact on improving the lives of people living with HIV who experience the condition of lipodystrophy,” said Rick Zbur, executive director of Equality California. “Lipodystrophy causes physical pain and strain on the skeletal system, and treatment is important to a person’s physical and emotional well-being. Requiring insurance companies to cover lipodystrophy treatments is not only medically necessary, it is the right thing to do.”
Ben Klein, Senior Attorney and AIDS Law Project Director for the GLBTA Legal Advocates & Defenders (GLAD), also said, “Lipodystrophy is one of the most hidden and under appreciated issues of the HIV epidemic. Our longest-term survivors of HIV have been suffering in silence from debilitating medication side effects because of insurance company indifference and discrimination. It will cost so little to end this suffering.”