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First in Fig Newtons, Last in Routine HIV Testing: Nightmare in the Bay State

By Ed Perlmutter

July 13, 2011

Massachusetts, the state in which I live, boasts many firsts -- among them, the first state to recognize marriage equality (2004), the first typewriter (invented by Charles Thurber in Worcester in 1840), the first Fig Newton cookie (invented by James Henry Mitchell in Newton in 1881), and the first subway (opened in Boston in 1898 and still operating the same nineteenth-century trolley cars).

And now, much to my dismay and chagrin, the Commonwealth of Massachusetts can lay claim to a dubious distinction -- a sorry and avoidable "last" -- and this new claim is nothing in which any citizen of this fine state can take pride.

On July 7, Pennsylvania Governor Tom Corbett signed into law legislation that eliminates burdensome written requirements for HIV testing and brings Pennsylvania HIV testing more in line with current recommendations from the 2006 federal Centers for Disease Control and Prevention (CDC) guidelines. While this law does not get all the way to routine opt-out HIV testing, which is the form of testing I support wholeheartedly, Pennsylvania's action does make Massachusetts the last state in the nation where written informed consent HIV testing is the only way to get an HIV test.

Indeed, it's been an active month in the world of HIV testing news, except here in the Bay State, where Senate Bill 1108 (An Act to Increase Routine Screening for HIV) sits moribund in the hands of our Joint Committee on Public Health, awaiting Lord knows what action(s) before some form of the legislation (a bill quite similar to what was passed in Pennsylvania) is brought to both chambers of the legislature for an up-down vote, and then onto Governor Deval Patrick's desk for signing. Lives literally hang in the balance, and these necessary legislative actions will hopefully occur well in advance of the end of the current legislative session on July 31, 2012.

"It is the job of the health care system to make HIV testing as routine as cholesterol screening," said Dr. Jonathan Mermin, director of HIV/AIDS prevention at the CDC, on June 24, the same day his agency released findings from a three-year effort that identified more than 18,000 newly-infected HIV-positive people and enrolled three-quarters of them in treatment.

Tattoos, as best I understand them and which at present do not adorn my body, tell stories, and I'm going to have Dr. Mermin's exquisite comment tattooed right on my forehead -- my own tattoo scarlet-letter homage to HIV testing.

The CDC's routine opt-out HIV testing program was conducted in hospital emergency rooms, drug treatment centers and STD clinics in 25 states and cities with the highest HIV prevalence. The study especially targeted African Americans, who account for about one-half of new HIV infections in the United States each year.

In the District of Columbia alone, the program diagnosed more than 1,650 people who had not known they were infected with HIV; in Maryland that number was more than 1,050, and more than three-quarters of the people tested through the initiative were black. Approximately 1.2 million US citizens are infected with HIV and about 20 percent of them don't know it.

When introducing Senate Bill 1108 to a hearing this past April, Massachusetts State Senator Patricia Jehlen, the bill's sponsor, estimated that upwards of 8,000 citizens of our Commonwealth may be infected with HIV but unaware of their status. During my own testimony before the Joint Committee on Public Health that day, I estimated that number to be 6,000, but the truth of the matter is that not a soul has a bloody clue how many individuals are infected with HIV because virtually no one is being offered an HIV test in any medical setting in Massachusetts. Pick a number, any number -- the possibilities are endless and sobering and frightening.

Bury one's head in the sand long enough and one emerges, when it's time to come up for air, with nothing but a wicked case of sandy head. And just because public health, health care and HIV/AIDS service organization officials do not discuss the thousands of undiagnosed HIV infections in the Commonwealth of Massachusetts does not mean the infections do not exist. But it sure is a convenient if convoluted defense mechanism from facing reality. And the reality is that we have a public health debacle percolating just under the surface -- and it's time, way past time actually, to let the HIV testing begin.

In the fluff journalism piece of the year, seemingly initiated by the public relations machines of the AIDS Action Committee of Massachusetts and the Massachusetts Department of Public Health Infectious Diseases Bureau, Chelsea Conaboy of the Boston Globe reported, on June 17, that Massachusetts has dramatically reduced its infection rate, cutting new cases by about half since 2002. In 2002, 1,056 people in Massachusetts were diagnosed with HIV, and in 2009 the figure was 567.

When the AIDS Action Committee CEO delivered these very same statistics at the April hearing on the HIV testing bill, the local media chose not to pick up Rebecca Haag's rose-colored quotes and statistics, which heralded our Commonwealth's "success" in reducing the HIV infection rate as an example for other states on how to prevent HIV. Rather, Colleen Quinn of the State House News Bureau focused on my testimony and my Accidental Activist contingent of 1,000 paper clips I had placed in a bowl with me at the testimony table. Each paper clip represented one new HIV infection since I last testified before the same committee in October 2009 in support of a routine opt-out HIV testing bill that failed to reach the floor of our House and Senate before the end of the legislative session in July 2010.

I shared the testimony table this past April with Bennett Klein, an attorney for Gay & Lesbian Advocates and Defenders (GLAD) and one of the last stalwart defenders of written informed HIV testing. Mr. Klein told the committee that signing a piece of paper for written consent often acts as a barrier and prevents people from taking the test. "This issue is too important to do nothing," Klein said after my testimony. "We need to get more people tested and into medical care."

Yet nothing continues to be done. And because I represent a silent coalition -- those infected with HIV and who don't know it because they have never been offered an HIV test -- the phones are not exactly ringing off the hook here at the national headquarters of An Accidental Activist. In the last few months I had to lay off the receptionist (yours truly) and the office manager (yours truly) and the mail room dude too (yours truly) and I made the difficult decision to convert the Executive Board Room into a playpen for my three growing kittens -- better use of the space as I saw it.'s Pride 2011 Word on the Street feature posed the question "what do you think generations of LGBT folks before and/or after yours need to understand about the way your generation has responded to HIV/AIDS?" As part of my response, I wrote, "Dr. Anthony Fauci's statement from the NIH/NIAID on 2010 National HIV Testing Day reads: 'Routine HIV testing is central to eradicating the HIV/AIDS pandemic' yet the terms 'routine testing' or 'routine HIV testing' do not appear once, not a single time, in the Obama administration's National HIV/AIDS Strategy. What up with that? Who's zooming whom?" It's a similar disconnect that has the head of AIDS Action Committee of Massachusetts spewing HIV infection statistics that are disingenuous at best and untruths at worst.

May God strike me dead for saying this {sound effect cue: irrationally crazy-assed lighting bolts, followed by flames and fire bolts of biblical proportion}, but the only reason I can think that Massachusetts has yet to embrace routine HIV testing has to do with its Puritan past. Yes, Virginia, HIV is primarily a sexually transmitted virus; and yes, even people in the Commonwealth of Massachusetts have sex, and many have unsafe sex, and many more are unwittingly spreading the HIV virus they carry because they do not know they are infected because they have never been offered an HIV test.

And so it goes. But this Accidental Activist won't sit still and he sure as hell won't be quieted until the state in which he lives initiates routine HIV testing. And he won't allow skewed statistics regarding the present HIV infection rate in Massachusetts to be offered as the gospel; that is a public disservice and, frankly, a crying shame.

In the next few days, the public affairs intern at An Accidental Activist headquarters (yours truly) will be contacting each member of the Massachusetts Joint Committee on Public Health, offering them the link to the recent CDC findings on routine HIV testing and urging them to work collaboratively and move Senate Bill 1108 out of their committee. And in the coming months I'd like nothing more than to turn the kitty playpen back into a bona fide Executive Board Room for the burgeoning headquarters of An Accidental Activist. The cats will be just fine playing in the cellar.

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See Also
Quiz: Are You at Risk for HIV?
10 Common Fears About HIV Transmission
More Viewpoints on U.S. HIV Testing Policy


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An Accidental Activist

Ed Perlmutter

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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