In This Case, I Don't Even Own That Kind of Towel

By Ed Perlmutter

February 14, 2011

I did not get into this Accidental Activist thing to make friends, but rather to influence people and to help save lives by shifting HIV testing to a Routine Opt-Out paradigm. I wish to affect change in a public health policy -- at least in the state where I live -- that currently is about as relevant as a leisure suit.

With each passing month, I realize that I won't be palling around any time soon with the stakeholders in the Massachusetts HIV/AIDS health and services organizations and won't be receiving invitations to the high-rolling fundraising events they regularly sponsor. I'd rather hang at home with my three kittens anyway. My opinions are different and I make them known. My positions are unwelcome and in large part dismissed. Although I take umbrage at being dismissed as a know-nothing by the establishment, what really makes me umbrageous is this:

"Preliminary data for 2009 indicates new HIV diagnoses are under 500 cases for the first time. Had Massachusetts NOT made the investment it had in prevention and care, there would have been a projected 1,369 cases. It is estimated that without the programs we have had in place over the past 10 years, there would have been over 4,085 additional cases of HIV in Massachusetts."

The Massachusetts Department of Public Health (DPH) is presently distributing "Talking Points to Maintain HIV & AIDS Funding", from which this quote is pulled, to HIV/AIDS service organizations in Massachusetts as they prepare to lobby the state legislature to prevent further/future cuts to the HIV/AIDS line item in our state budget. Regarding the self-congratulatory quote above: more than a little deconstruction is in order and we'll get to that shortly, and deconstruct we will.

The DPH has been working with members of our state Senate on an HIV testing bill to be filed in the 2011-2012 legislative session. While the working draft of the bill would finally do away with Written Informed Consent (Massachusetts and Pennsylvania are the final two states clinging to this weather-worn HIV testing policy), it would instead institute Verbal Informed Consent with Contemporaneous Documentation, a model that is clunky and impractical and complex given the state of the virus, the state of the world and the state of dysfunction in the medical community. I call this form of testing "Written Informed Consent in Drag."

In Massachusetts at least, HIV is spread, and continues to be spread, because the infected are not offered an HIV test and as a result do not know their status. The four following examples, while fictional, are hardly outlandish and represent the very type of people and population clusters who are infected and do not know it. They need to be tested.

These four individual cases alone demand that the 2006 CDC-endorsed Routine Opt-Out Testing model be implemented as the one and only realistic approach:

He's a 30-something father of two from Chicopee and spends several nights a week on the road from Gloucester to Cape Cod, making sales calls for his employer, a marine supply company. He's HIV positive but he doesn't know it. He does know, however, that he likes sleeping with men, very much, and does so every chance he gets, which is fairly often and the mode is almost always unsafe. His family physician has never mentioned HIV to him, nor has he mentioned it to his doctor.
She's a high-functioning post-modern junkie. Still afraid of needles after all these years, she prefers to snort her heroin. By day, she gets by as an office assistant in Worcester; by night, she has a special seat reserved for her at the bar around the corner from her apartment. She's had HIV for at least three years, but still shows no symptoms. At least two nights a week, after two or three beers and two or three toots, she brings another man home and has wildly hot, and unprotected, sex.
He's 50 and teaches at a college outside Boston. He remembers the early years of HIV/AIDS, when friends and colleagues and strangers were dying in unspeakable numbers. Those days are faint memories to him now. He broke up with his partner five years ago, remains single, and after hitting the gym on Tuesday and Thursday afternoons he heads home, goes online and hooks up with guys he finds on a website devoted to bareback sex. He never discusses his status (positive), which he does not know, nor do his partners. It's all about sex after all. His physician in the leafy suburb in which he lives and works has not offered him an HIV test in more than six years.
She's a retired librarian from Fall River; her husband died in 2004. Since then, she's had just one boyfriend for about six months a few years back. While with him, she remained monogamous and never dreamed of using condoms because she was past menopause. And while he did not bring up safe sex, he seemed a nice, upstanding man. These days, she doesn't leave the house much and goes to the doctor twice a year -- once for a mammogram and once for a routine physical. She's infected with HIV.

These are the very people who are most likely never going to initiate a conversation about HIV testing -- even with all the prevention funding and outreach in a rapidly-shrinking HIV/AIDS bucket/budget. These are also the very people that routine opt-out testing will "target" and as a result they are much more likely to be tested - and to stop spreading the virus - in a Routine Opt-Out world than in a Verbal Consent with Contemporaneous Documentation one.

Rather than living in a perpetual state of denial and disregard, like the people in my four scenarios, the Massachusetts DPH would do us all a favor by admitting the obvious and stop being deceptive about citing a "definitive" number of HIV diagnoses while touting how successful their prevention methods and techniques have been. Please don't get me wrong -- the department's prevention methods may very well have had some success in diminishing the numbers of new, known cases in high-risk sectors, but the new diagnoses among non-targeted populations that will come with a new testing policy would expose the failure of these policies alone to stop the spread of HIV.

I remain steadfastly convinced that routine opt-out testing increases the number of individuals being tested and diagnosed (evidence supports my assertion), allowing the newly HIV-diagnosed to begin treatment when appropriate and stay healthier longer. And routine opt-out testing sends the clear message that HIV testing is standard for all patients, regardless of race, gender, or sexual orientation -- an incredibly powerful step toward breaking away forever from the stigma surrounding HIV.

The DPH should give us a break and rewrite their talking points like the one quoted above to something more like this:

"Preliminary data for 2009 indicate fewer than 500 HIV diagnoses. While this number appears low, there are thousands of Massachusetts residents (2010 estimate: 6,000) who are HIV positive and do not know it. DPH endorses Routine Opt-Out HIV Testing and will work with the legislature and the HIV/AIDS service community to ensure that testing become standardized and routine, without stigma or complication, and will help guide the state in making proper investments in appropriate prevention methods and post-diagnosis case management and treatment options."

While so many turn a blind eye to the proliferation of undiagnosed HIV cases -- and the best approach to get at the problem -- I'll continue tilting at windmills. The battle for routine opt-out HIV testing is not futile and I will never throw in the towel as I carry on with this advocacy work. Those who know me understand that in this case I don't even own that kind of towel. Happy 2011: it's time everyone wakes up, faces the facts, and deals with the crisis.

I, for one, have emerged from the shadows of cluelessness, and will continue, umbrageously, to challenge public policies and propaganda that promote an archaic and downright cruel health-care policy.

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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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