I'll Take the Paradigm Shift. Can You Super Size It Please?

By Ed Perlmutter

September 8, 2011

If for no other reason (and there are many other salient ones), the encounter described here explains precisely why routine opt-out HIV testing is the only testing method that should be instituted in Massachusetts. No one should settle for anything less; I certainly will not.

During a recent meeting to discuss "An Act to Increase Routine Screening for HIV," the HIV testing bill that has recently been reported out of the Massachusetts Joint Committee on Health Care Financing and split in two parts, a prominent Massachusetts citizen, who happens to be gay, told me this:

He said that during his recent annual physical he asked his internal medicine physician, who also happens to be gay, for an HIV test. Rather than offering him the associated pre-counseling, written informed consent paperwork and finally the HIV test itself, the physician instead balked.

"You don't need an HIV test," the (gay) physician said to the (gay) patient. "You're in a monogamous relationship."

"I never said that," the (gay) patient said to the (gay) physician. "I said I had a boyfriend."

And that's all she wrote.

As for me, I'll take the Paradigm Shift. Can you Super Size it please?

In his book The Four Agreements: A Practical Guide to Personal Freedom, Don Miguel Ruiz lays out a simple and potent framework for discovering clarity and helping to transform the way(s) in which we live our lives. Ruiz's Third Agreement -- Don't Make Assumptions -- is perhaps the most important agreement of the four; by making assumptions (which we do all the time) we create emotional poison and as a result are asking for myriad problems.

The internal medicine physician assumes his patient is in a monogamous relationship, and by doing so he does not have the courage to ask questions -- important questions -- about his patient's sexual partners and practices. And whether or not this man, who asked for an HIV test, is in a monogamous relationship with his boyfriend is not the point.

HIV testing should be free of assumptions and free of judgment. Or as Dr. Jonathan Mermin, director of HIV/AIDS prevention at the U.S. Centers for Disease Control and Prevention (CDC), recently stated, "It is the job of the health care system to make HIV testing as routine as cholesterol screening."

I could not agree more wholeheartedly. To better understand what Dr. Mermin means, all you have to do is read my story.

Physicians, who in the twenty-first century live and die by a time clock and the next lurking appointment, simply don't have the time or the inclination to engage patients in discussions about HIV. And so instead, like the assuming internal medicine doctor, the overwhelming majority of clinicians assume that they too know who their patients are and what they should or should not want regarding their own health care.

What is routine opt-out HIV testing anyways? A friend asked me last week to describe this testing model for which I continue to advocate.

To patient: To help maintain your health, we're going to run complete blood work today, and an HIV screen will be part of that.

Patient: What if I don't want to be tested for HIV?

To patient: You may decline (or opt-out) of the HIV screening test and it will not be performed. Otherwise, you will be tested.

Routine opt-out HIV testing. Simple and straightforward, as it should be.

My HIV physician here in Boston is Paul Sax, who is also the Clinical Director of the HIV Program and Division of Infectious Diseases at Brigham and Women's Hospital and Associate Professor of Medicine at Harvard Medical School. Dr. Sax has penned a brilliant and cogent analysis of why he and every infectious disease physician and HIV clinician he knows in Massachusetts is not supporting the HIV testing bill that they should be embracing with all their hearts and souls. I encourage you to read his piece, posted at TheBody.com on August 9. For reasons unknown, especially to those who support the removal of written informed consent HIV testing without additional layers of privacy protections, several layers were added to the bill following a morning of testimony this past April at the Massachusetts State House.

The final months of the 2009-2010 Massachusetts legislative session (which ended July 31, 2010) were literally pissed away on casino gambling legislation, which, might I add, did not pass that session nor did the routine opt-out HIV testing bill for which I so vigorously lobbied. In a "déjà vu all over again" moment, a new form of casino legislation was unveiled last week at our State House.

Former Massachusetts attorney general Scott Harshbarger and a leading gambling opponent said in a statement regarding the proposed bill that "release of new casino legislation signals yet another milestone in Beacon Hill's concerning slide deeper into a closed-door culture marked by little debate, less dissent and an even greater likelihood of improper influence." "Casino legislation" is disturbingly interchangeable with "HIV testing regulations" in Mr. Harshbarger's quote; and sad but true, this does not surprise me at all.

Why Massachusetts Department of Public Health officials and cohorts from HIV/AIDS and legal services organizations, those who worked behind closed doors with the legislators on the final version of the HIV testing bill, could not consult the very clinicians who are at the frontline of offering and managing HIV testing protocol leaves me (virtually) speechless and incredulous. Why could they not leave well enough alone? It is with a heavy heart that I too no longer support this bill in its present form, and neither should any reasoned citizen of the Commonwealth of Massachusetts.

In an opinion piece in the August 18 issue of Bay Windows, Rebecca Haag, President and CEO of AIDS Action Committee of Massachusetts, decries a 25 percent cut to our state's HIV/AIDS prevention budget. The cuts have been incurred ostensibly because "from 1998 through 2008 we cut new diagnoses of HIV by nearly 60 percent ... no other state in the country has seen this kind of success in fighting the spread of HIV." In other words, our "success" in preventing HIV has stabbed us in the back in the funding arena. The cuts are being driven by reductions in federal spending on HIV/AIDS as mandated by recent Congressional budgeting and new restrictions stipulating that federal cash must be directed to clinical settings such as doctor's offices and health centers that emphasize HIV testing and prevention.

Ms. Haag goes on to bemoan the cuts based on her continued faulty line of logic. "Our experience also shows that we cannot ignore people who are HIV-negative," she writes, "and we are much more likely to reach those people with prevention messaging in community settings rather than clinical ones. Think about it: when was the last time your doctor asked you about HIV, or engaged you in a conversation about sex?"

I rest my case. There are virtually no new HIV diagnoses in Massachusetts because virtually no one is being offered an HIV test in either clinical settings or community settings, whatever those are (town halls? river boathouses? baseball fields?). The sponsor of the original HIV testing legislation from this session, state senator Patricia Jehlen (D-Somerville), estimates that upwards of 8,000 citizens of our Commonwealth are HIV-positive but do not know it because they have not been offered an HIV test. The twisted irony here is that Massachusetts would regain every federal prevention dollar lost, and then some, once the Commonwealth starts testing people in a routine and standardized approach, per the 2006 CDC-endorsed HIV testing guidelines -- in other words, once people start being diagnosed with HIV, which is inevitable. But, pretty please, don't blow your prevention success horn, citing extraordinarily low HIV diagnosis statistics. Time and routine testing will sadly prove this line of reasoning entirely flawed and fallacious.

A few weeks ago I visited with a member of the Massachusetts Joint Committee on Health Care in his office at the Massachusetts State House to discuss the convoluted and overly-layered HIV testing bill that may very well become the law here in the near future. I asked what he thought about the fact that Dr. Sax and most if not all of the infectious disease physicians and HIV clinicians in Massachusetts are now opposing the legislation that, frankly, they should all be supporting.

"When people out there (hand motion to the landscape beyond his office window) are dissatisfied with a certain piece of legislation," he offered, with a peculiar gleam in his eye, "those of us here (hand motion to the inside of the State House) could not be more delighted."

Huh? His reasoning: Not all parties can or will ever agree on a given bill, so the legislature will probably pass a bill to piss off the very people who should not be pissed off and most likely will have to revisit the legislation a few years down the road when its original intended purpose does not have the desired effect.

No wonder the public approval rating of the U.S. Congress and our own state legislature is at an all-time low.

I could not make this stuff up, even if I tried.

"I'm sorry, sir, but we just ran out of the Paradigm Shift. How about sampling our newest and most popular special -- the Business as Usual?"

Thanks, but no thanks. I'll cook up my own special, and will let you know the ingredients and recipe once it's been concocted. Stay tuned.

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An Accidental Activist

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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