July 13, 2016
Over 100 Massachusetts doctors have written a letter to MA House Speaker Robert A. DeLeo, urging the passage of An Act Relative to HIV-Associated Lipodystrophy Treatment (H927), a first-of-its-kind bill which would mandate insurance coverage to treat long-term survivors of HIV for a disfiguring condition.
Lipodystrophy is a 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 physical pain and psychological anguish: 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.”
“As physicians, we work hard every day to treat patients and eliminate unnecessary suffering,” the letter reads in part. “We are distressed that the refusal of insurers to cover lipodystrophy treatment prevents us from obtaining the best health care available for patients with HIV. Treatment of lipodystrophy is basic medical care; it is not cosmetic. It is also sound public health policy.”
The letter was signed by prominent physicians from the state’s leading teaching hospitals, directors of community health centers, professors at Harvard Medical School, and editors of infectious disease journals. Signatories include Dr. Daniel McQuillen, president of the Massachusetts Infectious Disease Society; Dr. Paul Sax, Editor-in-Chief of Journal Watch HIV/AIDS Clinical Care; and Dr. Kenneth Mayer, Co-Chair and Medical Research Director at Fenway Health.
Because lipodystrophy is associated with the earliest effective treatments for HIV, those that transformed the prospects of living a long and healthy life with HIV. People with lipodystrophy tend to be the longest-term survivors of HIV, and that population is small and shrinking.
The bill was passed by the Senate in February. The House and Senate versions of the bill are now at the House Ways & Means Committee.
GLBTQ Legal Advocates & Defenders (GLAD) founded and leads the Treat Lipodystrophy Coalition, which has been working for four years to pass the bill.