The efforts of the Treat Lipodystrophy Coalition have paid off. Starting in November, Massachusetts residents who are experiencing Lipodystrophy cannot be denied medical coverage for treating it.
From the Coalition:
On August 10, Governor Charlie Baker signed into law An Act Relative to HIV-Associated Lipodystrophy Syndrome Treatment, and the law will go into effect November 9. This first-of-its-kind legislation, sponsored by Senator Mark Montigny and Representative Sarah Peake, requires public and private insurers to cover treatment of a debilitating side effect of early HIV medications. This law means that some of the longest-term survivors of the HIV epidemic will finally have access to critical health care they need and deserve.
What is lipodystrophy?
Lipodystrophy is a disfiguring side effect of some 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.
How was this law passed?
GLAD (The Gay Lesbian Advocates and Defenders) convened the Treat Lipodystrophy Coalition (TLC) 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.