An Accidental Activist
Giving Back Through Research
December 7, 2015
Since my HIV diagnosis in July 2006, I've been connected to the Infectious Diseases Clinic at Boston's Brigham and Women's Hospital (BWH) and have participated in three National Institutes of Health studies under the umbrella of the AIDS Clinical Trials Group (ACTG). I am in very good hands.
My Shifting Seat on the HIV Merry-Go-Round
April 12, 2013
Regarding HIV clinical care, my friend James always says, "stay close to the center of the merry-go-round." And it's great advice. Stay close to the center and gravity keeps you balanced and secure, in the right spot, even though you're spinning fast, round and round. Shift out from the center and all bets are off. For the past six and one-half years, I've had my ass firmly planted at the center of the merry-go-round, right where I need to be. And I've been holding onto that spot for dear life, and there I've received the best HIV clinical care I could possibly imagine.
Start Where You Are, Use What You Have, Do What You Can*
September 10, 2012
On April 27, 2012, with the stroke of a pen and little fanfare or media attention, Massachusetts Governor Deval Patrick signed into law Senate Bill 2158 ("An Act Increasing Screening for HIV"), thus removing a decades-old requirement to obtain written informed consent prior to HIV testing. The Commonwealth's new law now allows for an individual to give verbal informed consent before receiving an HIV test. Until the law took effect on July 26, 2012 (again with little fanfare or media note), Massachusetts was one of only two states that had mandated written consent, a testing model which many clinicians and testing advocates, myself included, believed posed a barrier to testing.
Simmer on Low; Stir Occasionally
April 5, 2012
If it seems too good to be true, it probably is.
Massachusetts HIV Testing Policy in 2012: Six Degrees of C. Everett Koop
December 2, 2011
A "funny" thing may happen on the way to bringing HIV testing law in Massachusetts into the 21st century - NOT A DAMNED THING. ZERO. ZILCH.
I'll Take the Paradigm Shift. Can You Super Size It Please?
September 8, 2011
If for no other reason (and there are many other salient ones), the encounter described here explains precisely why routine opt-out HIV testing is the only testing method that should be instituted in Massachusetts. No one should settle for anything less; I certainly will not.
2011 "Fight HIV Your Way" Contest -- I Won Third Place; This Work My W(hole)
August 3, 2011
My entry in the 2011 "Fight HIV Your Way" contest, sponsored by Bristol-Myers Squibb and its first-line protease inhibitor Reyataz, has been selected as one of 25 national third prize winners. I entered the contest this past February to help raise awareness about HIV testing issues in general and specifically the need for routine opt-out HIV testing here in Massachusetts, which now holds the dubious distinction of being the only state in the United States where Written Informed Consent testing is the only means to be screened for the HIV virus.
First in Fig Newtons, Last in Routine HIV Testing: Nightmare in the Bay State
July 13, 2011
Massachusetts, the state in which I live, boasts many firsts -- among them, the first state to recognize marriage equality (2004), the first typewriter (invented by Charles Thurber in Worcester in 1840), the first Fig Newton cookie (invented by James Henry Mitchell in Newton in 1881), and the first subway (opened in Boston in 1898 and still operating the same nineteenth-century trolley cars).
Tear Down This Wall (and Not a Moment Too Soon): HIV Testing Testimony at the Massachusetts State House
April 11, 2011
I delivered testimony in favor of a Verbal Informed Consent HIV Testing Bill, now making its way through the Massachusetts Legislature, to a packed hearing room on Tuesday, April 5, 2011. While this bill is neither the Routine Opt-Out HIV testing model nor the bill I would support in a perfect world, last time I checked we live on a rather imperfect globe. I decided it was time to stop waltzing in the Mosh Pit, where things can get messy. Rather, my testimony took me on the High Road, a road less traveled, at least in the experiences thus far of An Accidental Activist.
In This Case, I Don't Even Own That Kind of Towel
February 14, 2011
I did not get into this Accidental Activist thing to make friends, but rather to influence people and to help save lives by shifting HIV testing to a Routine Opt-Out paradigm. I wish to affect change in a public health policy -- at least in the state where I live -- that currently is about as relevant as a leisure suit.
An Accidental Activist
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.
Subscribe to Ed's Blog:
December 7, 2015 - Giving Back Through Research: A Blog Entry by Ed Perlmutter
April 12, 2013 - My Shifting Seat on the HIV Merry-Go-Round: A Blog Entry by Ed Perlmutter
September 10, 2012 - Start Where You Are, Use What You Have, Do What You Can: A Blog Entry by Ed Perlmutter
April 5, 2012 - Simmer on Low; Stir Occasionally: A Blog Entry by Ed Perlmutter
December 2, 2011 - Massachusetts HIV Testing Policy in 2012: Six Degrees of C. Everett Koop -- A Blog Entry by Ed Perlmutter
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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The opinions expressed by TheBody.com's bloggers are entirely their own, and do not necessarily reflect the views of TheBody.com itself.