December 2, 2011
As an action-packed year for the HIV/AIDS community draws to a close, TheBody.com takes stock of 2011 in a new series of articles, "2011 HIV/AIDS Year in Review." Read the entire series here.
I'll take "Massachusetts HIV Testing Policy" for $500.
[Daily Double! Applause, suspense, a hush grows over the studio audience.]
Hot diggity, I'll wager every last cent.
[You can hear a pin drop.]
The answer is: "NOT A DAMNED THING. ZERO. ZILCH."
[Internal glee, knowing I'm about to hit the Jackpot and really score.]
I've got this one: What happened in the Commonwealth of Massachusetts during the 2011-2012 Legislative Session regarding changes to its 20th-century HIV testing laws?
[Lights flash, I scream in glee, the audience goes bonkers. I am a rich man. I wake up.]
Bad dream? Recurring nightmare? Sad reality?
* * *
A "funny" thing may happen on the way to bringing HIV testing law in Massachusetts into the 21st century - NOT A DAMNED THING. ZERO. ZILCH.
Actually a lot has happened here in Massachusetts in the last few months but none of it serves the public good or the public's health. I consider the issue for which I advocate a public health crisis: replacing our HIV testing policy (Written Informed Consent) where currently a negligible number of citizens are being offered an HIV test.
It is entirely possible that when the current legislative session ends here on July 31, 2012, the Written Informed Consent HIV testing law that has been on the books since the 1980s will remain the status quo. Why does this enrage me? Why is the HIV testing paradigm in Massachusetts not routine and standard, along the lines of the 2006 CDC testing recommendations? Why are not more people across all demographic groups being tested? Read my story; that's all you have to do understand why the thought of not moving away from Written Informed Consent is completely and absolutely redonk.
What went wrong? Why can the Massachusetts legislature not reach consensus on the Verbal Informed Consent HIV testing bill proposed earlier this year? I ask more questions these days than provide answers. This is not my style.
The short answer: nasty and avoidable political posturing and backstabbing, all at the expense of the silent coalition I represent in this battle - the thousands of Massachusetts citizens who are infected with the HIV virus but do not know it because they have not been offered an HIV test.
* * *
A visit to a periodontist last month revealed the need for a minor procedure. Once I revealed my HIV status to him, the doctor was concerned about excessive bleeding during the anticipated procedure. He wanted to contact my HIV doctor and I agreed that was a good idea. I appreciated his cautious and thorough approach to my periodontal health and I promptly gave him my physician's phone number; by day's end they had conferred about the procedure and my condition.
But given the language in the now seemingly moribund HIV testing bill, the conversation between my gum guy and my HIV doc would have required a written consent form from yours truly, something that in this case I would find totally unnecessary. No other disease restricts the sharing of medical information (medications, diagnoses, labs, etc.) between clinicians or from a hospital to a primary care physician; those who crafted the Verbal Informed Consent HIV Testing bill for some reason felt it necessary to further stigmatize HIV by adding this additional layer of written consent. Why can't we leave well enough alone and let HIPAA be HIPAA? I am comfortable and secure in trusting that physicians will do the next right thing in caring for their patients, me included.
What has happened here in Massachusetts is insidious political posturing and backroom bill authoring; along the way dedicated and front-line physicians and influential physician groups like the Massachusetts Medical Society were left out of the bill's development process and they no longer support the bill in its present format. And I now stand with the physicians. AIDS Action Committee of Massachusetts, GLAD, the ACLU and other organizations do support the current bill, and were involved in its development, and from what I've been told the two factions are no longer speaking. And the legislative leaders are apparently furious that the two sides cannot see eye to eye. Each contingent has dug their heels in the sand; neither is budging.
* * *
There is nothing special about HIV. I don't feel special knowing the virus courses through my body, undetectable but omnipresent. Nor do I feel like I should be afforded special rights by virtue of my HIV status. I live with HIV each day, much like others live with hepatitis C or diabetes each day. To layer on additional requirements like written consent for the sharing of my medical records, for example, goes a long way to further stigmatize me and my HIV status.
I thought we were trying to tear the stigma apart, not build it back up.
* * *
I ask further: If so many can occupy Wall Street, why can't one single soul chain himself to the golden dome of the Massachusetts State House? I'll even chain myself sideways and stay put until the legislature sees fit to pass a smart HIV testing bill, one that removes the present requirement for written consent and allows current privacy protections to apply to those with HIV.
This is the rhetorical question I posed last month when I met with a Massachusetts state representative, his legislative aide, and an official from a state agency who is trying to find a way to reach consensus or compromise on the testing bill before July 31, 2012. I spoke passionately about the pressing need to pass a sensible routine HIV testing bill this session, and the group seemed receptive to my ideas.
During the meeting, I suggested that it may take someone with the stature and gravitas of C. Everett Koop, our former U.S. Surgeon General who turned 95 in October, to get the diametrically opposed parties into a room. A good mediator and public health advocate, Dr. Koop is the exact type of person who can ensure that rational discussions about the future of HIV testing could occur, which would hopefully allow the legislative stalemate to end and HIV testing to begin. If you have ideas of who else might be a good arbitrator/mediator, by all means send me their name(s); in the meantime, it's Six Degrees of C. Everett Koop.
My advocacy and willingness to literally and figuratively scream from the top of the golden dome is at the very least symbolically important and hopefully will keep policymakers focused on what really matters.
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.
Read more of An Accidental Activist, Ed's blog, on TheBody.com.
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