As the director of a public-health consulting firm in Boston, Andrew Fullem is an expert on the long-term effects of HIV, and he understands how lipodystrophy, the disfiguring medical condition caused by the use of the earliest antiviral medications, can keep people with HIV depressed and ashamed. But Fullem’s understanding is also personal; he could see it every morning in his mirror.
HIV-positive for over 17 years, Fullem suffered from facial wasting, one of the classic side effects of the first generation of antiviral drugs. While the cocktail was a game changer in terms of survival rates, one side effect was abnormal fat cell function, which hollowed out Fullem’s cheeks and gave him the signature look that he feels visibly marked him as living with HIV. “I’ve heard people gasp. I’ve heard people say, ‘Oh, he must be HIV-positive,’” he said. “You become a walking billboard for this disease.”
Despite the fact that he was healthy, Fullem noted he was confronted with a physical manifestation of his HIV status, which “wears away at you every day.”
Fullem learned that injectables could rectify the wasting, but when he went to his insurer, Blue Cross, he was denied coverage because the procedure was considered cosmetic. “I paid for it out of pocket,” he explained, noting that he was in a position to cover the approximately $1,300 treatment, which often includes $1,000 follow-ups. Fullem considered challenging his insurer, “but the idea of it exhausted me.”
Bennett H. Klein, the senior attorney and AIDS Law Project director at the Boston-based Gay & Lesbian Advocates & Defenders, had been doing appeals for lipodystrophy sufferers like Fullem. With the threat of lawsuits, often the insurance companies would agree to pay to correct facial wasting or fat deposits on the neck (“buffalo hump”) and under the chin (“horse collar”), but “what we found was that insurance companies would avoid being sued by giving in, but they were going on and denying everybody else,” Klein explained.
In 2014, GLAD began lobbying for a bill to get treatments for lipodystrophy covered by insurance companies as a mandate in Massachusetts, the first bill of its kind to be introduced in state legislatures. The number of people affected in the state is small—maybe 500 individuals—and the costs relatively minimal, with surgery to remove fat deposits at about $5,000. But for a mostly older population often constrained by other HIV-related costs, the change would be huge.
“It’s a profound need for a low cost, one that is really important for the people who are longest-term survivors,” Klein explained, noting that newer medications don’t carry the same side effects, so the population impacted is contained. Klein argues that those whom this bill would be helping are the “people who lived through the worst years of the epidemic, and many of the people who volunteered for the clinical trials.”
While the physical impact of early AIDS drugs are well known in the HIV advocacy and gay communities, state legislators were initially mystified by the condition. To counteract that, GLAD built a coalition of medical, legal, and community supporters and made a scrapbook profiling people living with lipodystrophy. Klein explained that getting a bill passed in Massachusetts is a cumbersome process that often takes multiple legislative sessions. The previous legislative session ran out before the bill could be voted on, but it did make it through the committee reviews. Klein hopes that with momentum from the previous session, the bill could become law in the Bay State in 2016.
But Klein and Fullem have higher hopes of Massachusetts becoming a model for passing legislation in other states. “It has really been one of the invisible issues in the epidemic that has not received the attention it deserves from the [AIDS] advocacy organizations,” Klein said. For Fullem, rectifying a fixable problem that would benefit many of the people who paved the way for today’s less debilitating treatment is a no-brainer. “We fought this battle for HIV to be part of society,” he said, “and when we are being denied that because insurance companies won’t put in a little bit of money to fix this, it seems to be a shame and just wrong.”