Two Reasons Why Some People Do Not Get Tested for HIV

At 3:00 PM EST today, the National HIV Testing Day Twitter Town Hall will be taking place.  Check out the #nhtd hashtag for tweets about HIV testing.  My initial thoughts are too long to convey in a tweet, so I thought I'd map them out here.  HIV testing is incredibly important, but there are two things that always come to mind whenever I hear people calling for HIV testing, two reasons why people may not want to get tested.  I've been talking about both of these reasons for years, and no one has been able to give me strong counterarguments for them that I can use when people give these reasons to me.  I welcome hearing such perspectives in the comments.

The first reason has gotten more attention in recent health care reform debates.  Many people do not get tested for HIV because they do not want to be labeled as having a pre-existing condition when it comes to seeking health insurance.  Years ago in graduate school, I had a friend who said that he was not going to get tested until he earned tenure and could be more greatly assured that he would never lose his insurance since he would have greater job security.  There's a lot of logic to what he said.  If he took a new job and had to sign up for new insurance, a pre-existing condition could make it difficult, and drug therapies aimed at HIV are not cheap.  This is one reason why many of us argue that true health care reform must include provisions for those who have a range of pre-existing conditions. 

The second reason why some people choose not to get tested for HIV has to do with our judicial system.  Many people do not want to get tested for HIV because being HIV-positive subjects them to greater criminal prosecution.  Back in the late 1980s when I started having sex, the belief was that you needed to take measures to protect yourself if you did not want to contract HIV.  In the late 1990s, that began to change as states (over thirty of them at last count) began to argue that individual responsibility was largely irrelevant and instead started to criminalize the transmission of HIV.  Actually, I'm wrong.  In five states (Illinois, Iowa, Missouri, South Dakota, and Tennessee), you do not have to transmit HIV to be a criminal.

Missouri really drives me batty, though.  As Tim Dean puts it in Unlimited Intimacy, "Missouri is unique in explicitly denying the use of a condom as a defense" (6n10).  In other words, if you are a man who is HIV-positive, and you have sex with someone while wearing a condom and without disclosing your status, you are a criminal.  If you are an HIV-positive woman, and you have sex with a man and ask him to wear a condom but do not disclose your status, then you are a criminal.  If you are transgender, then this point obviously applies to the person/people who insert(s) a penis into the other(s).  We can (and should) discuss the ethics of disclosure but not here.  My argument in this post is that the criminalization of HIV transmission has had the effect of pushing some people not to get tested.  As someone told me when I was doing HIV-related volunteer work when I lived in Ohio, "If I don't know my HIV status, then I decrease the reasons why someone would want me in jail."

Many people use the argument that getting tested for HIV and learning your status means that you gain greater control over your own health and well-being.  There's a lot of truth to that.  But getting tested and finding out you have HIV also means that you become a member of a class of people known as the HIV-positive, and we live in a country that means people with that label are allowed to be treated in ways people without that label do not, which means losing some of the control people have before being tested.  Many people who do not want to be treated in those ways simply do not get tested.  In no way am I arguing that getting tested for HIV is a bad thing.  It can be really important and even necessary.  I do just want to be clear that there are legitimate reasons why some people choose not to be tested, and dismissing those reasons does not help anyone.

If you believe in the importance of HIV testing, then I hope you not only urge individuals to get tested but also push our local, state, and national governments to enact laws (or remove laws) that will encourage and not discourage people from getting tested.  It's something I'm trying to do by raising these issues whenever I can.

ETA: I created a Twapper Keeper for all of the #nhtd tweets.