Governor Baker signs bill making Bay State first to cover lipodystrophy treatment

Treat Lipodystrophy Coalition
Members of GLAD's Treat Lipodystrophy Coalition on March 5, 2016, the day they testified for the bill that mandates insurance coverage for the debilitating HIV medication side effect. Governor Charlie Baker signed the bill into law on Aug. 11, making Massachusetts the first state to require the coverage. Photo courtesy of GLAD

Long-term survivors of the HIV/AIDS epidemic in the Bay State can finally gain access to insurance coverage for treatment of the debilitating side effects of early HIV medications thanks to the bill that Governor Charlie Baker signed into law today, Aug. 11.

Sponsored by Senator Mark Montigny and Representative Sarah Peake, the bill — An Act Relative to HIV-Associated Lipodystrophy Syndrome Treatment — will go into effect on November 9.

“Some of our longest-term survivors of the HIV epidemic have been suffering profoundly, silently and invisibly because of medications,” said Ben Klein, senior attorney and AIDS law project director at GLAD, in an August 11 MassLive report, which went on to say:

The new law will require insurers to cover surgery, injections or other treatments for the disease. The copays will have to be comparable to copays for other similar services.

Massachusetts will be the first state to mandate this coverage.

Klein said lipodystrophy remains “one of the most unrecognized issues in the HIV epidemic.” His organization has met people who refuse to leave their homes for fear of being ridiculed and people who are depressed, suicidal or living in pain due to the disfigurement.

A group of more than 100 doctors wrote to House Speaker Robert DeLeo, D-Winthrop, supporting the bill. The doctors wrote that lipodystrophy causes serious health problems, including head and neck pain, postural problems, depression and inability to sleep. It enhances stigma and discrimination against HIV patients, most of whom are now in their 50 and 60s.

“Treatment of lipodystrophy is basic medical care; it is not cosmetic,” the doctors wrote. “It is also sound health policy. It is costlier to address the harm of untreated lipodystrophy (e.g., pain medications, physical therapy, psychotherapy) than it is to treat the underlying disease.”

According to a statement by GLAD’s Treat Lipodystrophy Coalition, the TLC began the fight for the bill in 2013:

after representing several people with lipodystrophy who were experiencing profound suffering but could only get medical treatment if they lawyered up and threatened to sue their insurer.

Together with then State Representative Carl Sciortino, the original bill sponsor, we realized that a more systemic solution was needed and the idea for this legislation was born. The TLC brought together people living with HIV, advocacy and service organizations, and dedicated physicians and medical professionals.

Thanks to the leadership of legislative sponsors Representative Sarah Peake and Senator Mark Montigny, the commitment and work of TLC partner organizations, the efforts of our community’s long-time State House advocate Arline Isaacson, and most importantly the courage and persistence of people living with HIV who have shared their stories, the TLC successfully passed this first-of-its-kind legislation that will make a powerful difference in people’s lives.