Senator Wiener Announces Bill Requiring Insurance Coverage of Medical Procedures for Long-Term HIV Survivors

The HEAL (Help End Antiretroviral-related Lipodystrophy) Act will require insurance companies and Medi-Cal to cover treatment of lipodystrophy, which is the result of effective but highly toxic early HIV medications
January 31, 2017

Today Senator Scott Wiener (D-San Francisco) will introduce the HEAL (Help End Antiretroviral-related Lipodystrophy) Act which will require insurance companies, as well as government programs, to cover medical treatment for lipodystrophy, a fat-redistribution condition impacting many HIV-positive people who took life-saving early HIV medication that were highly toxic in this regard. Equality California is sponsoring the bill.

Insurance companies consider procedures to correct lipodystrophy to be cosmetic, and therefore refuse to cover treatment. However, for people with HIV who experience the condition, it is not a cosmetic need but a medical necessity due to the significant physical and psychological impacts on these individuals. The early HIV medications that caused lipodystrophy are no longer prescribed, so there is a finite population in need of this treatment.

The HEAL Act requires that all health insurance plans governed by California law must cover medical treatment to correct HIV-associated lipodystrophy, which creates abnormal accumulations of fat, for example, in the belly and upper back areas. HIV-associated lipodystrophy only affects a finite number of men and women living with HIV who first took the medications in the 1990s, so the number of those affected is not growing. Treatment is a simple procedure, and can prevent future costs associated with having lipodystrophy, including physical therapy, psychotherapy, pain medications, and antidepressant medications.

“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," said Senator Wiener. "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.”

HIV antiviral medications, also known as “the cocktail," revolutionized HIV care in the 1990s, allowing HIV-positive people to live healthier and more normal lives. Yet, they also had side effects, including of giving people lipodystrophy, which results in both abnormal accumulations of fat and abnormal loss of fat. Abnormal fat accumulation may manifest as a significant fat pad on the back, the neck and under the chin, and increased abdominal girth.

“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.”

Lipodystrophy has severe physical and psychosocial consequences. Fat accumulations on the neck can cause pain, headaches, restricted movement, inability to sleep, and spinal and postural problems. In addition, substantial medical literature concludes that lipodystrophy results in “impaired quality of life in both men and women with HIV,” including depression, isolation, poor social functioning, and increased stigma associated with HIV. Fear of lipodystrophy causes some people with HIV to stop taking their medication, even though current medications don’t cause lipodystrophy. Others become shut-ins due to disfigurements like “buffalo humps” and “horse collars” stigmatizing them in public.

“Lipodystrophy is one of the most hidden and underappreciated issues of the HIV epidemic,” said Ben Klein, Senior Attorney and AIDS Law Project Director for the GLBTA Legal Advocates & Defenders (GLAD). “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.”

Insurance companies already cover similar procedures, like breast reconstruction and testicular replacement for cancer patients, without claiming that these procedures are cosmetic. Treating the consequences of lipodystrophy – a disease caused by FDA-approved medications – requires a simple, inexpensive liposuction to remove accumulated fat and dermal fillers to repair disfigurement from fat losses. The State of Massachusetts passed a similar bill in 2016. The Massachusetts Center for Health Information and Analysis (CHIA) reported in May 2014 that coverage for this benefit would result in an annual increase, over five years, to a member’s monthly premium of between $0.01 (0.000%) and $0.10 (0.02%) per year.