The Routinization of Destigmatization: H.R. 4470 and HIV testing

By Drew Gibson

About two weeks ago, a bill was introduced in the US House of Representatives as is common practice in Washington. This bill—H.R. 4470—was introduced by Rep. Maxine Waters (D-CA) and has been called the Routine HIV Screening Coverage Act of 2012. What the bill proposes to do can be inferred from its name, with the added mandate that the routinization of HIV testing be implemented by health plans without imposing any cost sharing requirements on the patient or denying anyone coverage due to a lack of “appropriate risk factors”. Seems like a slam dunk, right? HIV/AIDS treatment and prevention have been at the forefront of national and international healthcare policy for going on two decades and anything that would help inform the 1 in 5 HIV positive Americans who are unaware of their status and unknowingly spreading the disease is a no brainer. Well, not exactly.

Congresswoman Maxine Waters (D-CA) administering an oral HIV exam for herself

According to GovTrack, the bill has a 0% chance of passing, a statistic that I find dubious if for no other reason than by its very existence a bill has to have some chance of going through. Only 4% of all bills introduced in the House in 2009-2010 were enacted and the Routine HIV Screening Coverage Act of 2012 is a re-introduction of a bill put forth in a previous session of Congress. Currently, the bill is languishing in the chambers of the House Committees on Energy and Commerce, Ways and Means, Education and the Workforce and Oversight and Government Reform. Why does it take four committees to evaluate a five page bill? What in the Sam Hill are Ways and Means and what do they have to do with HIV testing? I have no idea, but I have the nagging suspicion that were one to ask anyone on said committees those questions, the answer would be an unintelligible blend of acronyms, legal jargon and groupthink.

Regardless of its legislative prospects, the need for routinization of HIV testing (and all STI testing, for that matter) is crucial to improving public health outcomes for future generations. It is for this reason that Preparing The Future was formed: in order to better educate and expose the would-be doctors, nurses, social workers, lawyers, dentists and pharmacists of the world to what routine HIV testing looks like and how it can be of great importance to their future practice. Initially, when the subject of HIV testing is brought up, most people jump straight to thinking about the potential to identify new infections and stop the spread of the disease. This is to be expected as this is the stated purpose of routine HIV testing, but it misses a larger, unifying element that can close the perceived gap between the haves and the have-nots in this country.

Imagine for a moment that you are a third year medical student, doing your Emergency Department rotation at The University of Maryland Medical Center in Baltimore, MD. You look out at the overwhelming sea of patients in varying degrees of distress and it is your job to decide which one of them you are going to give an HIV test as part of their overall care while in the ED. In the bed immediately across from you is a middle-aged black man who looks as if he hasn’t shaved in a week or so and was admitted for a severe case of pneumonia. Next to him is an elderly hispanic woman who broke her hip trying to climb down the stairs of her daughter’s apartment. Beside her is a 20-something gay black man who came in with a ruptured spleen. And, behind you is a 50-ish white man who drove himself to the hospital from his law office because of intense abdominal pain. Which one do you give the HIV test to? Who is at the highest risk for HIV infection and how do you know?

Listening to medical and nursing students speak about their initial prejudices and beliefs going into their work with Preparing The Future and then hearing how their experiences changed them was just incredible. It took a lot of courage for these young men and women to admit at all that they had preconceived notions of what HIV looked like and who the population they would be working with was. In the example above, it would be understandable to see how a med student would make a beeline for the disheveled black man with pneumonia or the young black MSM (man who has sex with men). I mean, if you look at the data within Baltimore City, 88% of all reported HIV cases are among African-Americans and the fastest growing group for HIV infections are young black men who have sex with men. Why would you test an elderly hispanic woman who just broke her hip going down some stairs? Old people don’t have sex…right? What about the 50-something white lawyer? Lawyers don’t get HIV. For crying out loud, the man came into the ED wearing a $3,000 Brooks Brothers suit. He couldn’t be HIV positive.

When you see it in print, the thoughts seem absurd, but we think them and act on them more frequently than we would like to believe. The CDC’s guidelines suggest regular HIV testing for everyone between the ages of 13-64, which is a nice step in the right direction. But, just because you turn 65 or have yet to turn 13 doesn’t mean you’re not at risk of contracting HIV. If you have a pulse and a libido, then you could contract HIV or any STI and being routinely tested as part of an annual check-up or hospital visit is probably a good idea. If we test everyone, then all of the prejudicial questions surrounding who should or shouldn’t be screened for HIV go out the window. We give all children Tetanus shots regardless of our personal beliefs regarding their likelihood of roughhousing and falling on a rusty fence post or nail. Why shouldn’t we do the same for HIV?

Before I got tested for HIV recently during a campus-wide testing event on World AIDS Day, I had never been specifically tested for HIV. Frankly, the idea of taking an HIV test scared the hell out of me and I didn’t know where to go for testing in the event that I changed my mind. I was like the ostrich who sticks his head in a hole in the ground and thinks no one can see him because he can’t see anything. To get tested was to acknowledge the fact that I could be HIV positive and it was a whole lot easier to tell myself I wasn’t and avoid the matter altogether. My way of getting around it while still believing I was being sexually responsible was to use condoms and every year or so, donate blood to the American Red Cross. In my convoluted stream of logic, since the Red Cross is legally obligated to check any donated blood for pathogens like HIV, if they never sent me a letter telling me that they found HIV in my blood, I was negative and could go on with my life. Never once did one of my physician’s ask me if I would like an HIV test or, even better, tell me that they were administering an HIV test unless I had any objections. All too often in the American healthcare system, the responsibility for initiating HIV testing falls on the patient when it should be the provider’s responsibility. I’ve never asked my doctor to check my prostate or test my reflexes. Why should I have to tell him to test me for HIV?

The routinization of HIV testing as proposed by H.R. 4470 is necessary if we ever want to stem the tide of this epidemic that shows no signs of slowing. With the incredible new anti-retroviral drugs on the market today, HIV+ people can live better, fuller, longer lives than would have been imaginable even 15 years ago. With ART therapy and a holistic system of care, there’s quite literally no telling how long people can live with this disease. From a strictly biological level, HIV is now another chronic illness like diabetes or Parkinson’s disease. But, as long as we attempt to pigeonhole what at-risk HIV populations look and act like, we perpetuate the stigma that makes HIV so much more painful to deal with mentally and spiritually. We have the medicines and the know-how to treat HIV. We just don’t have the trust needed to do so. Testing everyone is a way that we can show solidarity with the HIV community. It’s time we let the world know that this disease is defined by no one and concerns everyone.

Categories: HIV News

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1 reply

  1. Great discussion on the unnecessary complexities of HIV testing.

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