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

By Ed Perlmutter

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.

To help introduce and frame my testimony, I've included email exchanges between myself and Olivia Ford, the community manager at TheBody.com. I think our volley leads quite nicely and dramatically to my testimony. I hope the energy and emotion from the hearing will have a ripple effect, so that more citizens of Massachusetts become aware of the sizable silent coalition I've been fighting for since I got into this activism thing a bit more than 18 months ago. Last week's hearing was momentous. It was the moment the dialogue changed and the moment I changed the dialogue, and I will remember the day and the moment with clarity for the rest of my life.


Tuesday, March 28, 2011

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Hello O

I take back what I said on Friday about the self-imposed Friday deadline for my blog -- while important, it is far more important for me to complete and be comfortable with my testimony for next Tuesday's State House hearing regarding the proposed HIV testing bill here in Massachusetts. The blog will follow, and most likely will follow in a timely and logical progression.

Thanks for understanding.

Ed


Wednesday, March 29, 2011

Ed

Sounds good to me. Good luck with the testimony (or do we say 'break a leg'?). You'll be phenomenal, I'm *certain* of it.

Cheers till soon and let me know how it goes,

O


Monday, April 4, 2011

Happy Friday* Olivia,

Here's a thought:

Attached please find my testimony, to be given tomorrow at the Massachusetts State House. You may notice that I've named the file as a blog entry, which, now that it's complete, I think it could very well be, perhaps with a short, focused intro and a P.S. after.

I'm not trying to get out of writing a blog, not at all, although this did turn out to be rather consuming and really can stand alone. Or at least I think it can. It would probably be wise to hyperlink to the bill itself (S1108 -- An Act to Increase Routine Screening for HIV) and to last year's Routine Opt-Out Bill as well.

I'm all ears, will wait to hear back from you. Thanks for taking a look.

Ed

* Have not lost touch, but hoping if I will it, it will be true.


Tuesday, April 5, 2011

Ed

So!!!

First: How'd the testimony go?

Second: Testimony is a perfectly fine entry for your blog. Testimony, event speech, poetry, prose, letter to mom -- it's a flexible form/forum, thank the goddess.

I'll read this over ASAP, but something tells me it'll be fantastic.

Cheers to you!

O


Tuesday, April.5, 2011

Hello O

Thanks for your note earlier, inquiring how my testimony went this morning.

I think it went very well.

I felt quite certain I would be testifying alone, as I'd signed in as "Self / Activist" in the Affiliation portion of the form I filled out indicating my desire to testify. And that's how I had testified 18 months ago, alone in body but not in spirit. My Silent Coalition is always nearby.

So when they called my name and that of Bennett Klein (Supreme Court winning counsel, Senior Attorney at GLAD and one of the last holdouts of Written Informed Consent), it became apparent that we would not just be sharing the testimony table, but rather an extraordinary, triumphant and bittersweet "Tear Down This Wall" moment.

After an awkward back/forth ("You go," "No, please go ahead," "No, no ...), I decided that this was my moment. From the first sentence, my voice was strong and urgent and bellowing, my testimony felt potent and punchy (in a boxing kind of way), and I could tell that I had everyone -- the legislators on the Joint Committee on Public Health, the activists and HIV/AIDS service organization members in attendance, the press -- right here, in the palm of my hands. I may never experience quite that feeling -- like, "Finally, after all this time, people are actually listening to, and hearing, what I have to say..." -- gratifying, humbling and odd, at the very same time.

It is late now, and I feel a bit spent, truth told, and if you have a moment on Thursday I'd appreciate a little guidance about how to frame my testimony, the experience and the "aftermath" without being verbose.

Path of least resistance: run the testimony as my blog!

Thanks again for all of your support.

Ed


Wednesday, April 6, 2011

Ed

You recount the experience so exquisitely that I could hardly be party to denying the rest of our readership/the world the opportunity to read it. It's a moment both intensely your own and universal to anyone in this struggle who's stood up to speak their truth and been met with the silence of ready ears. It's a life-changing event on an individual level, and in so many cases, transformative for those assembled and for the issue itself, which appears to be the case here.

Cheers friend,

O


Testimony offered by Ed Perlmutter to the Massachusetts Joint Committee on Public Health, April 6, 2011

Chairwoman Fargo, Chairman Sanchez, members of the committee, thank you for allowing me to speak today in regards to Senate Bill 1108.

My name is Ed Perlmutter. I live in Brighton, I am 49 years old, and have known my HIV status since July 2006.

My diagnosis followed an 18-month medical odyssey where, as a member of a high-risk group, I saw numerous primary care physicians, physician assistants, nurse practitioners, and specialists for a variety of seemingly unrelated health conditions and not once -- not a single time -- did any health care professional either offer me an HIV test or engage in any meaningful conversation whatsoever about the virus.

When I finally tested positive for HIV, I had a full-blown case of AIDS, and for four-and-a-half years have been on a combination regimen of Highly Active Antiretroviral Therapies that thankfully has kept the virus suppressed.

Much has changed since I testified before this committee on October 6, 2009. I am now a "fierce HIV testing activist." That's what TheBody.com -- a national online HIV/AIDS Resource where I now write a blog entitled "An Accidental Activist" -- calls me. Those who know me will agree that, if nothing else, I tell it like it is. I've never considered that unusual, or "fierce," just the only thing to do.

And since that day in 2009 when I appeared before your committee, sadly, not much has changed at all. And that inaction has consequences.

I am neither a statistician nor an epidemiologist -- rather I work in a middle-management job at an international corporation- but I can tell you this: far too many HIV infections have occurred since that day late in 2009 because the overwhelming majority of our citizens continue not to be offered an HIV test. And because so many thousands of individuals are HIV positive but unaware of their status, they are unwittingly spreading their own silent infection -- the same virus that will remain with them, and with those they infect, and with me, for the rest of our lives.

For discussion's sake, let's say there have been one thousand new HIV infections in Massachusetts since October 2009 -- the actual number is unknown but in all probability could be that high.

Because the coalition I represent in the fight for expanded and routine HIV testing is a silent one, it was difficult as I prepared this testimony to visualize one thousand of those individuals. Undiagnosed, unaware of their status, I could not call them to plan a Lobbying Day here at the State House, or ask those silent one thousand to forward an Action Alert to their legislators throwing their support behind SB 1108. It's difficult to mobilize the invisible.

Sitting with me this morning are one thousand jumbo paper clips -- each representing one new HIV infection since October 2009. As you can see, one thousand of something -- one thousand of anything, really -- can be an overwhelming number. In 2009, the best estimate of HIV positive individuals unaware of their status was five thousand, but I simply could not carry that many jumbo paper clips up the Hill with me, nor frankly, swipe them from the supply cabinet at work without someone noticing.

And with my silent coalition I can do this {CUE: place bowl of clips under the table}. But just because I place a bowl of paper clips under the table (or just because we do not discuss the thousands of undiagnosed HIV infections in the Commonwealth), this does not mean they are not there. By maintaining Written Informed Consent HIV testing as the status quo for far too long, now into the second decade of the twenty-first century, we -- the Common Wealth We -- have turned a blind eye to these new and unnecessary infections. {CUE: return bowl of clips to table}. I am much more comfortable confronting the reality of the situation, disturbing as the reality may be. I urge you to do the same -- and help us help them in facing this harsh and daunting public health reality.

SB 1108 -- An Act to Increase Routine Screening for HIV -- is a decent first step, and a relatively sound if somewhat convoluted bill, and I can live with it, and so should you. I support its swift passage through both the Senate and House and then onto Governor Patrick's desk. The alternative -- retaining Written Informed Consent HIV testing -- is unfathomable and unconscionable. There is no more time to waste playing politics with this issue, while lives of the silently infected literally hang in the balance.

My support of this bill is not unqualified. I would urge an overall more robust approach. I encourage you, the members of the Joint Committee on Public Health, and your colleagues in both chambers, not to think that when SB 1108 is passed into law that we will have, with a stroke of the Governor's pen, solved the HIV testing problem. To the contrary -- when Verbal Informed Consent HIV testing becomes the law of the Commonwealth -- that will be the moment when the true hard work shall begin.

I understand that many in the physician and nursing community are not pleased with the language in the bill whereby primary care and infectious disease physicians (and their trained staffs) SHALL OFFER an HIV test to patients unless they determine that there is evidence of prior HIV testing. Governmental parlance calls this a mandate. I call it good and common sense -- a practice that will save lives -- a first step in addressing an urgent reality. I believe that by creating the expectation of offering the test, more physicians will finally step up to the plate, comply with the new law, and offer HIV tests in a more meaningful and routine manner. This is not an exceptional thing for physicians and nurses to do -- we are talking about saving lives, and it is simply the right thing for them to do.

The more I learn about Routine Opt-Out HIV testing the more I am convinced that my activism on behalf of last year's SB 2416 was time well spent. I am also convinced that Routine Opt-Out HIV testing will eventually become the standard for HIV testing across our country because it makes the most sense and tests the greatest number of people without cherry picking those considered to be high-risk.

What SB 1108 does not do -- and what the Routine Opt-Out testing bill that turned to vapor before reaching the Senate floor for an up-down vote in July 2010 did do -- is begin the long and arduous task of once and for all eliminating the stigma that still surrounds HIV.

I would like to commend the Commonwealth for conducting this public hearing and allowing me to testify before your committee this morning. I look forward to joining the coalition working to move HIV testing law full-speed into the present, and I'll continue to learn, and research, and opine about HIV testing issues regardless of the outcome. I've brought copies of my blog entries from TheBody.com, and I would encourage anyone interested in learning more about my thoughts on this crucially important yet often overlooked public health issue to stop me in the corridor once this hearing ends and I'll gladly give you a copy.

On behalf of myself and my one thousand jumbo paper clips (and the thousands more who could not journey up Beacon Hill with us this morning), please accept our appreciation for listening to my thoughts and opinions about SB 1108. We urge your support.

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See Also
Quiz: Are You at Risk for HIV?
10 Common Fears About HIV Transmission
More Testing News: Eastern States
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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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