As an action-packed year for the HIV/AIDS community draws to a close, TheBody.com takes stock of 2010 in a new series of articles, "HIV/AIDS Year in Review: Looking Back on 2010 (and Ahead to 2011)." Read the entire series here.
I had the pleasure of spending a recent weekend in Los Angeles, and for someone who has lived in New England for more than 27 years I'm struck each time I visit. LA seems very much like stepping into our cultural future. LA still has a refreshing and disarming new frontier feel, like anything is still possible there. If that sounds hokey, so be it.
All the rage these days in the San Fernando Valley is storefront Reflexology Massage Centers, 15 or so La-Z-Boy-type chairs arranged group-style in a dimly lit, comfy room with waterfalls and sunsets projecting on a large flatscreen TV and courteous and attentive Chinese men and women massage therapists giving 1/2 hour ($15) and hour ($25) reflexology massages (fully clothed) that are rejuvenating and relaxing and quite a deal to boot. I'd never had anyone punch me on the soles of my feet, but I'm hooked. Word to the wise: Punching yourself in the soles of your feet just isn't the same. And at 11 o'clock in the morning on a Thursday in November, the joint was jumping.
As weekends are wont to do, the magical one in LA ended and I returned to Boston, to my turf, and I didn't see anything even remotely close to the Reflexology Salons of The Valley. And I can't see them hitting this town anytime soon, but possibly in a few years. Philadelphia? Maybe next year, the year after? Kansas City? Three to five years? We trend, culturally speaking and otherwise, toward California.
For a newborn Accidental Activist like yours truly, the California HIV routine testing model that has been in effect there since 2008 is like taking a look into the HIV testing future. It's a sign of intelligent life too, especially for someone who spent so long in the care of a medical system that had simply shut down on offering HIV tests in anything remotely akin to a routine and standardized manner. We'll follow California's lead, trust me, and routine HIV testing is the model that will become the standard in all 50 states someday very soon.
I've been whining about anything and everything since returning from L.A. "I want a storefront reflexology treatment." "I want fresh rosemary that grows wild on the sidewalk." "I want warmth beneath my feet." And to get me through the day I've been serenading myself with Joni Mitchell's haunting 1970 lyric -- "... it's too old and cold and settled in its ways here, oh, but California, California I'm coming home ..."
2010: Action in the Movement Toward Routine HIV Testing
The most bittersweet moment of this year soon to pass was a small moment but one that has proven to be profound, insightful and ultimately, for me, wickedly telling. I was sitting in an air-conditioned Senate office on a blazing hot July afternoon with the legislative counsel to a Massachusetts state senator from Boston's North Shore. I explained to her the peculiar road that had led me to her office that day and why I had become such a vocal proponent of the Routine Opt-Out HIV Testing bill before the legislature.
I could not tell at that time if I was making any inroads with the senators and their staff with whom I had been meeting. I explained to the aide what an awkward position I found myself in, representing a very large yet completely silent coalition, and certainly the most special of interests in this sorry tale -- the thousands of Massachusetts residents who are HIV positive but do not know it because they have not been offered an HIV test. That's a hard sell, especially when organizations such as AIDS Action, GLAAD and the ACLU, who opposed the bill, had sophisticated Web sites and e-mail lists and Action Alerts asking their constituency groups to push a button and send an email to their state senator so they could restate points of argument about the HIV testing bill that were flawed at best and downright untrue at worst. "You won't be hearing from the constituency I represent," was my pathetic but sincere argument. "But if they knew their HIV status, I'm sure they would contact you in support of Senate Bill 2416." Sigh.
This kind and gentle woman told me that after 15 years working at our State House (primarily for this senator) she is leaving in early 2011 because, as she succinctly put it, "this place and the people in and around it have lost all sense of civility." What exactly do you mean? I asked.
You see it every day and read it in every form, she explained. Take, for example, the comments sections of online newspapers, magazines and blogs. Readers take hateful positions, make unsubstantiated claims, and then hide in anonymity behind online monikers that allow the repartee to seem relatively harmless. But this kind of debate has created a great deal of harm, she told me, and the lines have become inextricably blurred between what used to be known as truthful discourse (civility) and the new world order (propagandistic diatribes with baseless claims).
The week before my visit, she'd seen representatives from the AIDS Action Committee of Massachusetts, who had been lobbying their odd positions on the HIV testing bill, and she was left wondering what exactly their arguments had to do with instituting routine HIV testing. But deception and smear campaigns have become de rigueur, certainly in the current political climate we find ourselves in at the tail end of the first decade of this wobbly new century.
Dateline 2010: If you can't come up with a logical argument to defend your position on any issue, then hot diggity, pull a bouquet of propaganda and non-truths from your rear-end and call them blue-ribbon winning flowers from this year's Topsfield Fair.
And that's the sad political lesson I learned in 2010: The moment prominent and well-funded groups make a case against a particular issue (in this case, routine opt-out HIV testing), even if their arguments are based in nothing remotely close to the truth, it oddly sticks and becomes "truth-based." If Group X says it's true, then it must be true. Must it not be true? Reopen the Road to Civility, that's what I say. And I'll be here to help make it happen. Please join me.
While the Road to Civility may be temporarily closed, I am pleased to report the Validation Highway is wide open, and goes a long way in clearing one's head. Imagine the way I felt when the Boston Globe's lead editorial on July 13, 2010, supported the claims and positions I'd been making about Senate Bill 2416 for months:
While the bill has the support of the heads of many clinics and community health centers serving populations at high risk of HIV infection, including the Fenway Community Health Center in Boston, some AIDS activists oppose it -- most notably the AIDS Action Committee. The group raises the specter that, if the bill passes, patients could be tested without their knowledge. This is false, as is the group's assertion that the bill "would eliminate any need to get your consent for HIV testing" ... Because a company that makes anti-HIV drugs is lobbying for the bill, AIDS Action further depicts the measure as an effort by an "out-of-state pharmaceutical giant'' to "gut critical legal protections for people being tested for HIV." Actually, there's nothing sinister about this bill ...
My year-end update shall not become a doggy downer -- not with validation like that. I remain highly optimistic about the future of routine HIV testing. And 2010 was hardly a washout in the road to routine testing. While we ultimately "lost" our battle to enact routine opt-out HIV testing in the legislative session that ended July 31, 2010, in truth there never was an up-down vote in the Senate or the House, as fear mongering from those opposing this important legislation made a few key senators hesitant to move the bill forward.
But we raised this issue for the very first time at a statewide level. And we made our points clearly and cogently and spoke only about what was in the bill, not what was not in the bill. And we'll raise the issue again this January, when a new legislative session commences, with refined arguments and an energized coalition and an opposition who I hope will decide that it is far better to align itself with the mainstream, and proper, position. The Road to Civility is lined with forgiveness.
On a very bright note, this past April Governor Jim Doyle of Wisconsin signed into law a measure that moved his state from written informed consent HIV testing to routine opt-out HIV testing. No intermediary steps. No convolution of a model that has worked, does work, and will work. Shout-out to Wisconsin, legislating wicked well done! And that leaves three states left standing with fully intact written informed consent HIV testing on the books: Massachusetts, Pennsylvania and Michigan.
2011: Restating Key Routine HIV Testing Arguments With Clarity and Intelligence, Hold the Static
The new year will bring a fresh opportunity to restate the essential points we made in support of routine HIV testing in Massachusetts. These points remain potent and timely. They resonate.
_* Routine opt-out HIV testing will literally save lives. As more people are tested for HIV and diagnosed earlier, they can begin treatment sooner and hopefully live longer and healthier lives. This will save both money and resources from an already-strapped medical system.
- Routine opt-out HIV testing will help break the cycle of new infections. Studies show that up to 70 percent of new HIV infections are transmitted by undiagnosed individuals, and that people who know they are HIV positive are 3.5 times less likely to infect others.
- Routine opt-out HIV testing will move us forward in ending the stigma that still surrounds HIV. Thanks to advances in medications, research and science, HIV is no longer the death sentence that it was 20 years ago and has become a much more manageable condition, in that way not unlike diabetes. The availability of and access to effective and risk-neutral HIV medication regimens allows the newly diagnosed to manage life with HIV in ways quite different than, say, 15 years ago. And because the newly diagnosed are likely to remain healthy for many years to come, they are also more likely to make their HIV status known to others. Yo, HIV Stigma -- catch you on the flip side!_
And I intend to do in 2011 what I did not do this year past -- demystify and humanize routine opt-out HIV testing. What will routine opt-out HIV testing sound like? This script (embellishments added for dramatic purposes only) is presently offered by medical practitioners in clinics, hospitals and other medical testing environments where routine HIV testing is in place:
"Mr. Perlmutter, we'll be running some blood work today. The FeelGood Clinic also performs routine screening for HIV on all patients and we'll be doing that as part of your visit today."
"But wait one minute here, Doctor," pipes in a now feisty Accidental Activist, amazed that someone is actually talking about HIV. "I was tested a few years ago and I'm sure I'm still fine."
"We run routine HIV screening because of our desire to keep patients like you healthy and because there are excellent treatment options available for HIV. You may decline the test and it will not affect the care you receive at the clinic today."
Now was that so bad? To me, this script reads and feels like a breath of fresh air on the most glorious of May days. Rather than keeping HIV lurking behind a shrouded veil of denial and stigma as The Virus-We-Prefer-Not-To-Talk-About -- and don't -- states who have adopted routine opt-out HIV testing have entered a new age of HIV in which health care providers are better informed and knowledgeable about the virus because it becomes part of their daily standard operating procedures. Those diagnosed are better prepared to face the consequences of an HIV diagnosis because routine opt-out testing levels the playing field regarding HIV testing, diagnosis and treatment options.
There remain those who resist letting go of written informed consent HIV testing. They see it as the gold standard, as the end-all be-all, and contend that it is still an effective testing protocol. I fought so hard to see routine opt-out HIV testing enacted as the law in Massachusetts because I know firsthand that none of their arguments about written informed consent are true. I found out the hard way.
A little known fact about me: Not only am I a graduate with honors from The School of Letting Go, I am also the Headmistress! To those interested in matriculating, I am always available to discuss coursework and degree programs. Change is good, really it is. And routine opt-out HIV testing is the essential change we need to bring us into the future of HIV.
Breathe it in, breathe it out, let it go. I wish you all good health, and well-punched soles, in the year to come.
Send Ed an e-mail.
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 works as a manufacturing manager for a publishing company in Boston.