Calif. Lawmaker Wants Coverage for Disfiguring HIV Side Effect

SACRAMENTO, Calif. (CN) – A California Democrat is pushing for enhanced medical coverage for individuals harmed by early versions of HIV drugs, claiming that insurance companies are discriminating against people suffering from the debilitating side effects of treatments from the 1990s.

While pioneering antiviral medications dubbed “the cocktail” revolutionized HIV treatments, they came with toxic and disfiguring side effects. Many patients developed lipodystrophy, which causes irregular fat buildup in the face, belly, breasts and upper back.

Newly elected state Sen. Scott Wiener of San Francisco says private and public health care providers have denied HIV survivors medical coverage to correct lipodystrophy – a disease caused by FDA-approved drugs – under the guise that the treatments are unnecessary and merely cosmetic.

Wiener’s proposal, the Help End Antiretroviral-related Lipodystrophy Act, would require health insurance plans to cover California residents in need of corrective treatments.

“The early generation of antiretroviral medications saved thousands and thousands of HIV survivors’ lives, yet they scarred many survivors with the disfigurement caused by lipodystrophy,” Wiener said in a statement. “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.”

Wiener and patient advocates call the condition one of the “most hidden and underappreciated” issues of the HIV epidemic because of lipodystrophy’s stigmatizing and psychological effects. Sufferers can develop fat accumulations known as “buffalo humps” and noticeable sunken facial features.

While current HIV medications no longer cause the syndrome, Wiener says fear of developing lipodystrophy causes some people to skip taking their prescribed treatments. The fat buildup can also contribute to heart disease and diabetes.

Supporters argue that simple and affordable procedures exist to correct the disfiguring side effects, such as liposuction, yet insurance companies refuse to provide coverage. They note that insurance companies already provide similar cosmetic treatments for cancer patients, including breast reconstruction and testicular replacement.

The nonprofit Equality California says Wiener’s proposal will have a “real and immediate impact” on Californians.

“Requiring insurance companies to cover lipodystrophy treatments is not only medically necessary, it is the right thing to do,” said Rick Zbur, executive director of Equality California.

Massachusetts passed a similar bill in 2016, the first of its kind. The proposal was pushed by a number of advocacy groups called the Treat Lipodystrophy Coalition and was signed by Republican Gov. Charlie Baker in August 2016.

California lawmakers also passed a landmark bill last year that allowed organ transplants between HIV-positive patients. Senate Bill 1408 replaced outdated state law formed when less was known about HIV and which prohibited organ and tissue transplants. SB 1408 was the result of a federal law signed by President Barack Obama in 2013 which allowed scientists to research organ donations between HIV-positive patients.

Wiener has been extremely active during his first two months in office, proposing and co-authoring several progressive bills. He’s also called for a statewide mandate requiring new commercial and residential projects to include solar panels, sponsored a transgender bill streamlining the state’s identification laws and demanded that President Donald Trump release his tax returns.

The former San Francisco supervisor also joined a protest against Trump’s immigration order Saturday at San Francisco International Airport.

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