When I'm Right, I'm Right
By Ed Perlmutter
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.
"I can't believe no one offered me an HIV test."
Over an 18-month span (January 2005 to my HIV diagnosis in July 2006) I visited internal medical physicians, nurse practitioners, physician assistants, gastroenterologists, dermatologists, had a colonoscopy and an emergency appendectomy at a major Boston teaching hospital and not once -- not a single time -- did any medical professional offer me an HIV test or engage in any conversation about HIV and the possibility that I had contracted the virus and/or transmitted it. On the day I started my meds two months after diagnosis, my CD4 count was 60 and my viral load was extraordinarily high, more than two million copies.
When Dr. Sax contacted me in September 2009 to see if I would testify before the Joint Committee on Public Health at the Massachusetts State House in favor of a proposed bill that would replace Written Informed Consent HIV testing with the CDC-endorsed Routine Opt-Out HIV testing model, it took little time for me to agree to testify the following week. Even if testifying meant coming out all over again: Twenty years after exiting the gay closet, this time I'd be coming out of another closet -- the HIV positive one. I always sensed that if given an opportunity to help people avoid the medical folly I had endured by helping move HIV testing to a more open, routine and streamlined approach, I would take a leap, right out another closet door.
As I entered the hearing room almost one year ago today, I was nervous beyond hell but determined to tell my story clearly and honestly -- it is still a compelling and unnecessary story of a medical/public health model whose time has come, and gone. And mine is a cautionary tale, too, but it is hardly unique (the best estimate is that more than 5,000 Massachusetts residents are HIV positive but do not know it because they have not been offered an HIV test). I was told by several people after the hearing that my apparently dramatic testimony was the "pindrop" moment.
Perhaps to shield me from the often miserable truths and sorry circumstances when public policy, the legislative process and medical models collide, those involved in the coalition supporting routine opt-out HIV testing had not prepared me for the fact there would be so much vociferous opposition to this proposed bill -- and from such prominent organizations in the AIDS service and legal communities.
To paraphrase just a few of the opposition's testimonial offerings from the hearing day: Maintain the status quo. Written Informed Consent HIV Testing is still working. Every patient should be allowed to have a meaningful conversation with their doctor about HIV testing. Additional studies are needed to determine if routine opt-out testing is effective. "H E L L O. I AM YOUR STUDY. ME. THE DUDE IN THE THIRD ROW WITH THE YELLOW SHIRT AND THE JAW THAT JUST COLLIDED WITH THE FLOOR," I so desperately wanted to stand up and scream. I was a good boy and stayed in my seat.
An unexpected and bittersweet thing happened on my way out of the hearing that October afternoon: My innocence and naivete, whatever shreds remained in my soul -- were left in a heap in the corner of the room, to be swept up that evening by the cleaning crew and never to be returned. I walked out of our State House a different person than the one who had entered a few hours before, and while I did not exactly piece it together for quite some time, that moment was the birth of an accidental activist.
I became an activist because, during the months following the hearing, I came to know that, at least on the issue of Massachusetts instituting routine opt-out HIV testing, I am right, positively right, and that those who oppose what I so strongly support are wrong, dead wrong, not just because this activist is a lopsided or magical thinker, but rather they are wrong because there is no evidence to support their claims and they are out of touch with the importance of necessary and appropriate changes to HIV testing. I consider the change a matter of life and death, and do not consider that to be exaggeration.
There is so much more to tell of the exasperating political battle that ensued -- the propaganda campaign and the untruths (a.k.a. lies) that would be lobbed by those opposing the routine opt-out HIV testing bill from becoming law, the unlikely alliances formed and "evildoers" maligned, but those tales must wait for future entries at The Body -- said the unabashed tease turned accidental activist.
Today I just want to welcome you to my new world and invite you to join me on this activist journey, wherever it may lead. Probably best for us to buckle up; as I face some turbulence in the stretch ahead, but I will pull through, accomplish what I have set out to change -- because I am right, and I know I am doing the right thing.
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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