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Simmer on Low; Stir Occasionally

By Ed Perlmutter

April 5, 2012

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.

Long story short: a dream job quickly turned to nightmare, and among other missteps, I had sugarcoated certain distasteful traits of the person who hired me. Here I thought I'd been twirling my plates in the air so beautifully, just like the folks in the circus. Smoke and mirrors in this case. And the plates came crashing down, shattered pieces of rainbow Fiestaware everywhere.

And so, since the first day of 2012 and for the first time in more than 17 years, I find myself unemployed, a new jobless statistic in what apparently is an improving job market; could have fooled me. And so this: a somewhat longwinded explanation of why my Accidental Activist concoctions have moved to the proverbial back burner, and for the immediate near future will remain on a very low simmer. Stir occasionally.

*   *   *

On March 1, 2012, the Massachusetts State Senate approved a proposal that *should* provide greater access to HIV testing and bring Massachusetts into better compliance with the routine HIV testing recommendations laid forth by the Centers for Disease Control (CDC) in 2006.

As it now stands, Nebraska and Massachusetts are the only states still requiring written consent for HIV testing. From what I've been told by those involved with the history of this legislation, the Massachusetts verbal informed consent HIV testing bill is now on a fast track to pass our House of Representatives, at which time it will be signed into law by Governor Deval Patrick, most likely before the end of the legislative session on July 31, 2012. From my mouth to God's ear.

While the new law will eliminate the need for doctors to obtain written consent from patients and will instead require verbal consent only, it does not exactly make HIV testing routine, and the health care system will be playing a major game of catch-up here in our Commonwealth once verbal informed consent HIV testing becomes the law.

However, the law passed by our Senate still requires written informed consent from a patient in each instance that information is released from that HIV-positive individual's medical record. Many physicians and physician groups contend this form of written consent creates unnecessary barriers to quality care, especially considering the burgeoning use of electronic medical records which allow physicians to share patient records more efficiently and accurately. But legislative leaders are not tackling that issue, at least right now.

Much will be revealed in the coming months, once the HIV testing bill actually becomes law. We'll know if the move to verbal informed consent HIV testing is proving effective by seeing how many individuals are actually receiving an HIV test (compared to similar statistics during the years of written informed consent), and how many of those are testing positive for the virus. My hunch is that the numbers are not going to spike in the immediate near future. Time will tell.

*   *   *

Late last year, Massachusetts enacted legislation the will soon legalize casino gambling, yippee hooray, and I'll soon be able to squander money I don't have on blackjack and roulette. What fun, said the cynical son.

From 2007 to 2011, the casino gaming industry bet $11.4 million on orchestrated lobbying of our legislators to bring legalized gambling to the Bay State. Nice job, guys; you'll make it back in spades.

In comparison, during the same period, the health care industry -- hospitals, insurers, doctors and unions -- plunked more than $51 million dollars into the golden dome of our State House, trying to make sure their cantata voices are heard as our legislators begin the complex process of addressing the ways the state pays for health coverage. What will most likely emerge are Accountable Care Organizations (ACOs), whereby health care providers are paid for keeping patients healthy rather than being paid in a more piecemeal fashion for treating illness.

If I was a betting man (see above), I'd wager a big fat one that the advent of ACOs will bring greatly increased levels of HIV testing, and will concurrently increase the number of new diagnoses. In the not too distant future, it seems that our health care providers will be incentivized to keep us healthy. Routine HIV testing is sure to become part of that equation.

*   *   *

A few weeks back, it was suggested to me once again that I bring a malpractice suit against the physicians who cared for me (or for that matter didn't) during the 18-month period leading up to my HIV/AIDS diagnosis in July 2006. While I've written about this very conundrum before here at, my position on this kind of litigation has changed, much to my dismay. This time around, I looked at a potential lawsuit as a form of activism, and my compelling case (and possible court victory) would force the hand of the largest group medical practice in the city of Boston to change the protocol and procedures by which they offer HIV testing. I got a bit fired up, if only for a moment.

But medical malpractice litigation is not civil rights litigation, even if I framed it that way, and the kind of malpractice suit I would engage in could prove to be excruciatingly nasty and bitter and long. Luck be a lady, or in my case luck be the statute of limitations which in this case have passed me by. Things work out for a reason.

As for the Accidental Activist, it's time to regroup my brand of HIV activism and perhaps refocus my "silent coalition" -- the thousands of individuals in this Commonwealth infected with HIV who don't know it because they have never been offered an HIV test or engaged in conversation about the virus with their health care providers. They've become such an unruly lot. Not.

I'm going to spend the next month embarking on an exciting new prospect that has the potential to literally alter the course of my life, and I promise to keep you posted on my progress, success, or otherwise. And I certainly will keep you abreast of developments in my efforts to ensure that the silent coalition I represent soon joins me in my tone-deaf HIV-positive chorus.

Until then, the Accidental Activist is going to keep simmering, stirring and mixing it up as necessary.

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See Also
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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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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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