An Accidental Activist

Giving Back Through Research

AccidentalActivist1@gmail.com (Ed Perlmutter) — Mon, 7 Dec 2015 18:37:00 GMT

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

AccidentalActivist1@gmail.com (Ed Perlmutter) — Fri, 12 Apr 2013 11:51:00 GMT

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

AccidentalActivist1@gmail.com (Ed Perlmutter) — Mon, 10 Sep 2012 17:38:00 GMT

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

AccidentalActivist1@gmail.com (Ed Perlmutter) — Thu, 5 Apr 2012 15:56:00 GMT

If it seems too good to be true, it probably is.

In retrospect, I wish someone had reminded me of this obvious truth last fall. I'd been miserable at my former job -- underutilized, marginalized, bored -- you name it. I did not know what to do, where to turn, or how to move forward. I had just turned 50. And then the phone rang.

Massachusetts HIV Testing Policy in 2012: Six Degrees of C. Everett Koop

AccidentalActivist1@gmail.com (Ed Perlmutter) — Fri, 2 Dec 2011 15:05:00 GMT

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?

AccidentalActivist1@gmail.com (Ed Perlmutter) — Thu, 8 Sep 2011 07:46:00 GMT

During a recent meeting to discuss "An Act to Increase Routine Screening for HIV," the HIV testing bill that has recently been reported out of the Massachusetts Joint Committee on Health Care Financing and split in two parts, a prominent Massachusetts citizen, who happens to be gay, told me this:

He said that during his recent annual physical he asked his internal medicine physician, who also happens to be gay, for an HIV test. Rather than offering him the associated pre-counseling, written informed consent paperwork and finally the HIV test itself, the physician instead balked.

"You don't need an HIV test," the (gay) physician said to the (gay) patient. "You're in a monogamous relationship."

2011 "Fight HIV Your Way" Contest -- I Won Third Place; This Work My W(hole)

AccidentalActivist1@gmail.com (Ed Perlmutter) — Wed, 3 Aug 2011 08:06:00 GMT

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

AccidentalActivist1@gmail.com (Ed Perlmutter) — Wed, 13 Jul 2011 09:25:00 GMT

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).

And now, much to my dismay and chagrin, the Commonwealth of Massachusetts can lay claim to a dubious distinction -- a sorry and avoidable "last" -- and this new claim is nothing in which any citizen of this fine state can take pride.

Tear Down This Wall (and Not a Moment Too Soon): HIV Testing Testimony at the Massachusetts State House

AccidentalActivist1@gmail.com (Ed Perlmutter) — Mon, 11 Apr 2011 13:07:00 GMT

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

AccidentalActivist1@gmail.com (Ed Perlmutter) — Mon, 14 Feb 2011 17:19:00 GMT

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.

Routine Opt-Out HIV Testing in 2011: The Road to Civility Is Paved With Forgiveness

AccidentalActivist1@gmail.com (Ed Perlmutter) — Mon, 6 Dec 2010 18:11:00 GMT

I had the pleasure of spending a recent weekend in Los Angeles, and for someone who has lived in New England for more than 27 years I'm struck each time I visit. LA seems very much like stepping into our cultural future. LA still has a refreshing and disarming new frontier feel, like anything is still possible there. If that sounds hokey, so be it.

Sue the Bastards, That's What I Always Say

AccidentalActivist1@gmail.com (Ed Perlmutter) — Wed, 24 Nov 2010 16:03:00 GMT

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.

Two Plus Two Equals Seven, Doesn't It?

AccidentalActivist1@gmail.com (Ed Perlmutter) — Tue, 26 Oct 2010 20:46:00 GMT

Dr. N was running wicked late that afternoon, almost 90 minutes, and by the time he popped into the exam room I was 37 notches beyond fit to be tied and Dr. N was none too pleased himself.

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.

When I'm Right, I'm Right

AccidentalActivist1@gmail.com (Ed Perlmutter) — Fri, 8 Oct 2010 15:38:00 GMT

"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.

"I can't believe no one offered me an HIV test."