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Ed Perlmutter

An Accidental Activist


Sue the Bastards, That's What I Always Say
November 24, 2010

I am fairly certain that the Massachusetts State House is haunted, but only in good ways, by kind spirits. You heard it here first. Under the floorboards, behind portraits of fatigued-looking Governors of yore, in the uneven walls worn and rippled by time, run wise, determined and shit-kicking ghosts, but I was unaware of all this paranormal activity as I walked out of the hearing room in the State House 13 months ago after testifying in favor of Senate Bill 2416, which would have replaced Written Informed HIV Testing with Routine Opt-Out HIV Testing.

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Two Plus Two Equals Seven, Doesn't It?
October 26, 2010

As head of internal medicine at the flagship center of the mega-large group health practice where I had been a patient since moving to Boston 23 years before, Dr. N happened to be filling in for Dr. S that day. Dr. N was extraordinarily apologetic for his tardiness, and promised to get to the bottom of how his schedule had fallen so very far behind, and it was only 1 o'clock in the afternoon. Ouch. I got the impression that he would be assembling a tribunal of organizational wonks to determine the cause of a wait time that we both considered to be quite unacceptable.

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When I'm Right, I'm Right
October 8, 2010

"I can't believe no one offered me an HIV test." This became my mantra the summer of 2006, recanted time and again, along with anecdotes from the medical odyssey that began early January 2005 with what I thought were irritable bowel-like symptoms. My mantra, however, was only uttered in the safety of the HIV Program and Division of Infectious Diseases at Boston's Brigham and Women's Hospital. No one else knew my status then, not a soul, and as I went through qualification rounds for an NIH clinical drug study comparing the efficacy of two first-line HIV medication regimes, I looked forward to my visits to Dr. Paul Sax's clinic, where I would learn more about my condition, the virus itself, and when I might begin to feel some relief from the multiple AIDS-related symptoms I was experiencing. Dr. Sax and I spoke that summer about HIV testing practices in the United States and how testing models and regulations vary from state to state. I made it abundantly clear to Dr. Sax -- and to anyone on his staff who would care for me -- that the testing model in Massachusetts, Written Informed Consent, had obviously ceased to be effective. All you had to do was hear my story.

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An Accidental Activist


Ed Perlmutter

Ed Perlmutter

Ed Perlmutter was diagnosed with HIV in July 2006, and has been receiving HIV therapy through a National Institutes of Health (NIH) study since September 2006. He lives with his partner in an old farmhouse on the city limits of Boston, in the woods, amongst critters and varmints and dozens of varieties of dahlias. When he is not raising awareness as an accidental activist, he is a graduate student in health communication at Emerson College and works as a textbook publishing consultant.


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Ed's Posts on TheBody.com's Positive Policy Blog:

August 18, 2010 - Massachusetts "Opt-Out" HIV Testing Bill: Update

July 29, 2010 - Massachusetts HIV Bill Must Pass by July 31


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