BREAKING: Mass. insurers must pay to fix HIV medication disfigurement

Red RibbonIt’s finally law in Massachusetts: Insurers must cover the cost of surgeries to fix the disfiguring side effects of HIV medications, a condition which affects thousands of long-term survivors.

Gov. Charlie Baker on Wednesday signed the legislation, which undoubtedly will transform the lives of those who have paid a painful price for staying alive. Beyond the hit to the pocketbooks that HIV medications cause, many older-line medications have caused HIV-associated lipodystrophy syndrome.

The condition causes enormous fat deposits in certain parts of the body, often the belly or the back, creating a condition that has come to be known as “HIV humpback.” But it also can cause fat loss in the face and the limbs, creating a look of emaciation.

I first wrote about the condition and the efforts of then-Massachusetts Legislator Carl Sciortino in a story more than two years ago for Imstilljosh.

In an exclusive interview for HIV Equal last year, I spoke with Sciortino about why he left the legislature to become executive director for AIDS Action Committee.

You can read the details of the new law in this piece on I will be chatting with Sciortino soon and will post a follow-up on my blog.

“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 a statement to Masslive.

More than 100 doctors supported the bill. They stressed that the surgery to fix it is not cosmetic, and that the condition causes physical problems such as pain, poor posture, and insomnia.

“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 lipodystrophy (e.g. pain medications, physical therapy, psychotherapy) than it is to treat the underlying disease.”

Check back to often, as I will post my interview with Carl Sciortino as soon as he is available. Continue to expect more news related to long-term survivors of HIV, as well as cure and vaccine news, from my brand new website in the days ahead. Follow me on Facebook at David Heitz Health and Twitter (@DavidHeitz).

2 thoughts on “BREAKING: Mass. insurers must pay to fix HIV medication disfigurement

  1. Thankfully now that the medication and treatment has progressed so much these acts of fat redistribution and sinking of the face just doesn’t really seem to happen.

    We need to keep funding a cure and pressing forward. Never becoming complacent.


    1. Well it doesn’t happen now, no, but for those it has happened to it doesn’t reverse itself when they go on new meds of course. They deserve to have this disfigurement corrected! But you are right, we need to focus on a cure (and here comes my unpopular editorial comment — cure, not PrEP!)


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