February 25, 2016
The Treat Lipodystrophy Coalition (TLC) applauded the Massachusetts Senate’s unanimous approval today of S 2137, which requires insurance coverage for the treatment of HIV-related lipodystrophy. TLC, led by GLBTQ Legal Advocates & Defenders (GLAD) and AIDS Action Committee, is a coalition of people living with HIV, physicians, and HIV service and advocacy organizations.
Lipodystrophy is a disfiguring side effect of early HIV treatments, characterized by painful, abnormal changes in body shape, such as fat growths on the back of the neck that press on the spine; and facial wasting that is seen as a public disclosure of HIV status. Lipodystrophy causes profound and unnecessary suffering: spinal malformation and posture problems, headaches, restricted mobility, depression and anxiety, suicidality, and stigma. Despite the existence of simple and inexpensive treatments, insurers do not cover those treatments, improperly labelling them “cosmetic.”
“We are grateful for the leadership of Senate President Stan Rosenberg and the bill’s sponsor, Senator Mark Montigny,” said Arline Isaacson of the Massachusetts Gay & Lesbian Political Caucus. “Their support and leadership on this bill will allow immediate help to those suffering from this debilitating condition.”
“I hope we can all agree that it should be intolerable in Massachusetts today to deny care to the longest-term survivors of HIV, consigning them to lives as shut-ins or objects of ridicule,” said Carl Sciortino, Executive Director of AIDS Action Committee.
The bill will next be considered by the House. The legislation has a unique and built-in cost component: the condition affects only a small, finite, and shrinking number of people with HIV who took the first wave of anti-retroviral medications in the 1990s. Data from the Department of Public Health indicate that between 184 and 459 people with HIV would seek treatment. The population needing treatment would decline over time.
People with lipodystrophy, such as John Wallace and Andrew Fullem, have lobbied the legislature for relief. Wallace testified that he rarely goes out because “I don’t want people to see me,” and that he often contemplated suicide. Fullem said, “When my lipodystrophy is at its worst, I’m a walking advertisement for HIV. It’s demeaning and psychologically devastating.”
“For years GLAD has represented people with lipodystrophy who could only get medical treatment if they lawyered up and threatened to sue their insurer,” said Bennett Klein, AIDS Law Project Director for GLBTQ Legal Advocates & Defenders (GLAD). “Today’s vote is a big step forward towards ending this injustice.”
For more information about the bill, lipodystrophy, and the Treat Lipodystrophy Coalition, visit www.glad.org/tlc.