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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.

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See Also
Quiz: Are You at Risk for HIV?
10 Common Fears About HIV Transmission
More Viewpoints on U.S. HIV Testing Policy

Reader Comments:

Comment by: nancy (ma) Fri., Jun. 24, 2011 at 8:58 pm UTC
just so you know in the state of new jersey where im am originially from , asking a pt if the would take an hiv test is out of the question, it is just done with all your other bloodwork , when i came to massachussetts my jaw drop as i was told by the my nurse at my yearly check up that i would have to sighn a consent in order to receive one. i do every year, and is negative,but if it was'nt for taking it every year since i have been sexually active in new jersey i would have always decline from being scared and naive . i also think hiv testing should be mandatory so people dont get scared of it because after a while its a naturall test to take just like a papsmear.
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Comment by: Brooke (Seattle, WA) Sat., Apr. 16, 2011 at 11:21 am UTC
Wow the more stories I read/hear about HIV-AIDS the more saddened I feel about the basic medical community. I think an HIV test should be routine in an annual exam when you go to the Dr. When they run tests for ONE STD they should run them ALL. Especially the one with NO side effects until YEARS after you have it.

Ooh yeah and the incurable one with expensive medication.
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Comment by: Paul (Canada) Mon., Nov. 15, 2010 at 1:26 pm UTC
I hate to say it, but maybe its not so much a case of it not occurring as a possibility to the myriad of health professionals you've described but, perhaps, that they were afraid to suggest it as a possibility for reasons of appearing politically incorrect. I know that most physicians I've dealt with see it as a sensitive subject when they learn I'm a gay man. I tend to engage them more on the subject, even once they learn of my sexual orientation. There is an uncomfortableness in general about HIV, and surprisingly much ignorance about the disease, amongst general practitioner health professionals. I am a nurse and most nurses I've met except for the odd nurse practitioner haven't a clue about acute seroconversion syndrome.
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Comment by: Kevin Coutts (London) Thu., Oct. 14, 2010 at 4:48 pm UTC
Fantastic article!! If it wasnt for a fantastic GP Im not sure if Id have learned of my positive status too!! I too had a massive viral load on diagnosis 5.9million and CD4 of 78. I will be following your articles with keen interest!! Well done for speaking out! Kevin x
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Comment by: Mark S. King (Fort Lauderdale, FL) Thu., Oct. 14, 2010 at 2:43 pm UTC
We're so lucky to have your voice here, Ed. And thanks for having the courage to testify in favor of important legislation. Now keep on writing!
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Comment by: JJ (New Orleans, LA) Thu., Oct. 14, 2010 at 2:27 pm UTC
Same situation here. At the doctor A LOT for two years with minor stuff...sinus infections, headaches, a CT scan, etc before a new doc suggested HIV and STD testing after other bloodwork came back with weird numbers like low WBC, etc. My CD4 was under 100 and I suspect had doctors OR I been more aggressive my starting numbers would have been much better!
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Comment by: Dave (Pa) Mon., Oct. 11, 2010 at 1:37 pm UTC
Your suggestion of offering HIV testing at any healthcare interaction is hardly a novel idea. Many clinicians offer HIV testing, but so many more don't. The issues surrounding dealing with human sexuality are uncomfortable for both the clinican and the patient as well. I wonder if part of the equation of not being tested is the continued fear of discrimination as well as the potential of prosecution associated with an HIV diagnosis. Additionally, I believe that consumers of healthcare services may want to request testing but fear the repercussions for the obvious reasons offered. Sigma, discrimination and fear of prosecution are very real issues that continue almost 30 years into this epidemic.
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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'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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