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HIV Testing: Does It Contribute to Stigma?

By Sarah Sacco

June 27, 2011

Within the first year of my diagnosis, a close friend who worked in the medical field had an exposure to bodily fluids and had to go for testing. They knew my status, and in telling me the story very innocently said that they had to go to the "Whore House" for the tests. WOW! I initially was very upset about the implications of this statement -- in effect calling ME a whore. But the intentions of the person were not leaning this way at all; they were just using a term that was common in their place of employment without thinking about the implications. After some time passed, my wounds healed and I began to wonder just WHY this term was so common.

And then it struck me. In getting tested myself, I had to go through "pre-counseling" -- a process that is intended to educate people regarding their "risks" for HIV exposure and also to help the public health folks track the epidemic. After all, we use this data extensively in trying to tailor messages and reach people who may be likely to be exposed to the virus. So I know the value of the thing. But strictly speaking from a patient’s perspective, all those questions are really pretty exhausting. I can see how, if a person ended up testing negative, they would think that perhaps somebody testing positive had to have done ALL of the things on the list. And that leads to some assumptions about people who test positive for HIV.

I think it also leads to some fear for people to be tested themselves -- and gives people especially in the health care setting some unrealistic opinions regarding their own risks. I can hear them thinking "If I only check one of the 'risk' boxes then I must be okay. No need to be tested. And I can look down on people who do get tested or reveal their positive status.

This makes me wonder if it would be helpful to offer routine HIV testing along with annual physicals. As a woman, I get a Pap smear each year. Whether or not I think I might have been infected with any of several STIs, I am tested for them. Why not just add HIV to the list? I can also imagine a list of blood tests to watch -- blood sugar, cholesterol levels, and HIV. No big deal. If a result comes back positive, that would be a good time to trace back infections and make sure the person has access to health care.

I know there are some complicated emotions involved in all of this. But really, I think this measure would decrease barriers to testing, increase the number of people who know their status early on and thus have access to treatment and a healthier life. I also happen to think it would help to reduce the stigma associated with this virus. After all, if everybody is tested then people might actually start to realize the truth: This virus does not discriminate. ANYBODY can be infected.

Check out more discussion on mandatory HIV testing from a respected medical provider.

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See Also
Quiz: Are You at Risk for HIV?
10 Common Fears About HIV Transmission
More on HIV Testing

Reader Comments:

Comment by: Scott (Louisville, KY) Sun., Jul. 10, 2011 at 11:37 pm UTC
I'm for medical providers giving their patients HIV tests. I don't see a problem with an opt-out system. It should be fully explained that you have the right to opt-out. Having said that, I do have concerns only about repercussions from insurance carriers. I've not kept up with the law. I don't believe they can drop you for testing poz, right? Well, many do what they want and will find other ways to drop you. But, the new healthcare reforms will get rid of pre-existing conditions clauses by 2014, right? It is my understanding this has already happened for children.

As for the counseling concerns, I'm not concerned about that, because most I've known, including myself, didn't get any counseling after testing poz. I tested poz in the hospital and was told to "take care." Just about every person I know who tested at their doc or clinic said they were just sent on their way--some getting info where to seek treatment.

I recently had a debate in a forum about the need for a very accurate home test that you didn't have to send away. Many had concerns over no counseling at home, so they were against it. I said what I just said here--many don't get any counseling when they test at a doc's office. The patient often has to seek out their own treatment, counseling, and financial assistance on their own. So, I'm all for more testing and the development of a very accurate home test. I think many would be more likely to do a home test, because they fear even asking for an HIV test from their doc or even an HIV clinic. The important thing is to know and let's face it; even someone at your doc telling you all is going to be okay probably won't do much at first. That usually takes time to sink in after doing your own research and finding a knowledgable HIV doc. And, I've heard story after story of straight people, even with HIV/AIDS illnesses, not being given a test, because HIV wasn't on their doc's radar. Many docs still think this is only a gay virus.
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Comment by: Richard E (Toronto, ON) Mon., Jun. 27, 2011 at 9:58 pm UTC
It's unfortunate that there is so little critical thinking even in the HIV sector that CDC and others can so easily get away with proposing approaches to HIV testing that only increase the risks of people getting tested without informed consent... And I hate to say it, but the "respected medical provider" to whose article you link (a) misunderstands and misdescribes the very term "mandatory testing" (as becomes evident when you read her piece), and (b) fails to offer any convincing argument for subjecting people to the widespread violation of the basic human right to bodily integrity by performing medical procedures on them without proper, informed consent.

When will policy-makers and others realize that simply getting more people tested for HIV is not a sufficient objective or measure in itself? Routine testing is an unethical experiment supposedly aimed at eliminating HIV stigma - which its proponents at least explicitly recognize as a phenomenon - on the backs of the very people whom they admit face stigma (which ranges from nasty looks and comments all the way up to denying health services to firing people to physical violence including murder) as a result of testing positive. And yet to expose people to such a risk, without informed consent, could not possibly pass any rigorous ethical scrutiny. When will more groups of PLWHIV and AIDS organizations speak out againt this push for routine testing?
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What's Normal Anyway?

Sarah and Carmen Anthony Sacco

Sarah and Carmen Anthony Sacco

Carmen Anthony, Sarah and Abbi often ponder the meaning of "normal." Anthony's music brought him healing after his diagnosis with AIDS in 2000 when he was given six months to live. Sarah was diagnosed with HIV in 2003 at the age of 23. They met at a support group and embarked on life's adventure together. Then, along came Abbi -- a precious gift free from HIV! Life as a family with AIDS is not what anyone imagined, but it is full of music, blessings, and chaos!

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