Sue the Bastards, That's What I Always Say
By Ed Perlmutter
November 24, 2010
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.
Today, looking at that moment in the rearview mirror (and having spent considerable time in the State House this past summer lobbying in favor of the bill), it makes sense and I better understand why I jumped onto a white marble ledge in the foyer outside the hearing room the moment Mr. D, a director from a large Massachusetts state agency, stopped me. "Better sit your ass down and steady it, Mr. Ed," an activist ghost whispered in my ear, encouraging me to quickly reposition my derriere. "This one is going to be a doozy."
After briefly offering thanks for my testimony in which I recounted to the legislators on the Massachusetts Joint Committee on Public Health about a period of more than 18 months where I was seen for multiple unrelated medical symptoms by countless medical professionals and not once offered an HIV test or HIV counseling, Mr. D then asked me a very pointed and troubling question.
"Have you ever considered suing the doctors who cared for you?"
No, actually, I had not. I know that we live in a litigious society but I am not a litigious person. Filing a lawsuit against the internal medicine doctors, nurse practitioners, surgeons, gastroenterologists, dermatologists, against the large group practice employing them all, or against the insurance company (whoever they may be), suing any or all of them never once crossed my mind as a practical means to move HIV testing full-speed into the 21st century.
Perhaps I should not be surprised I was asked this question (we sue the people who get it wrong, right?), but Mr. D's suggestion seemed then and still seems to be quite an inappropriate solution to the issue of bringing Massachusetts' HIV testing in line with the 2006 CDC-recommendation of routine opt-out testing. Why would I focus my energy on a complex lawsuit that would likely last years, give me nothing but an irritable bowel, and help nothing and no one but the wallets of the attorneys who would be involved in such an unusual case? And what would the charges be anyway? When it comes to my "case," there is no question that litigation is not the answer -- too many lives are at stake in our efforts to move to routine streamlined HIV testing, there is too little time and I am too great a fan of logic.
Mr. D was not the only person to suggest I sue the doctors who cared for me. In June 2010, at the height of a misinformation campaign to bring down the routine opt-out testing bill (spearheaded and conceived, interestingly enough, by the AIDS Action Committee of Massachusetts), I received a pointed missive from Mr. B, a director at a Boston-based HIV/AIDS service organization who had aligned his group with those vociferously opposed to replacing written informed consent HIV testing (including GLAAD and the ACLU). Mr. D was responding to my "Call to Action," an email blast I dispatched, encouraging folks to contact our Senate President Therese Murray, perhaps the most powerful person in the Commonwealth and the one ultimately responsible for whether a pending bill is released from committee to the Senate floor for discussion and a vote.
"If you want to right a wrong," wrote Mr. D, "I suggest you file a law suit against your doctors because, ultimately, it was they, not the law, that failed you." Actually, Mr. D, it is the law, in this case Written Informed Consent HIV Testing, that remains the culprit, and that which failed me. I cannot sue a law. I really cannot blame the doctors either; rather, I see them as sorry pawns forced to comply with a model that is lost in a time/space continuum called the 20th century.
There are many additional vitriolic insults hurled my way in Mr. D's letter, but I'll pocket them for future entries, as they pertain to other issues in the opposition's smear campaign. And while Mr. D has been HIV positive for more than 20 years, and I thank him for all the work he has done for those of us with HIV and for the HIV/AIDS service community, he is terribly lost in another age. "The choice is clear," he wrote in closing, "you can either be on the side of doctors and the pharmaceutical companies or on the side of the rights of people living with HIV/AIDS." Huh? Can you please diagram that sentence?
I am on the side of people living with HIV/AIDS. But I'm also on the side of people living with HIV/AIDS who do not know they are living with HIV/AIDS because they have not been offered an HIV test because the current model has lost all relevance.
I am guided each day by the same sarcastic and endearing State House ghost who told me to sit my fat ass down last October. "Sue the bastards," he just whispered in my ear. "That's what I always say."
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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.
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December 7, 2015 - Giving Back Through Research: A Blog Entry by Ed Perlmutter
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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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