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HIV: The Truth about Testing

When I was 14, I spent a week at a camp that had a former gang-member as a guest speaker. He was middle-aged, but shorter than I was at 14, which is probably how he got his name, “Jimmy The Kid.”

He shared his story of IV drug use and violence in front of a campfire by the lake. His testimony was the classic “once I was lost, but now I am found” redemption story, but it ended with the shocking revelation that he still carried the consequences of his old life in the form of HIV.

There was stunned silence.

First of all, redemption stories are supposed to have a happy ending and second, this was the early 90’s. It was only about 2 years after Magic Johnson had made his announcement about his status and retired from basketball; people were still scared about this disease.

Jimmy was the first person I saw in-person that I knew was infected. He reminded campers that they couldn’t be infected by holding hands or hugging someone with HIV and lots of campers approached him later to shake his hand and hug him. I am embarrassed about it now, but I remember wanting to touch him.

I don’t remember the first person I actually touched with HIV. My (our) perception of the disease has changed so much. We are a post-“Philadelphia,” post-“RENT,” society. I touch a patient with HIV almost every day now and for the most part it doesn’t even hit my radar screen, but some encounters with this disease and its diagnosis still stand out.

I once took care of an HIV-positive woman with an armpit abscess. While preparing to drain it, I exposed a portion of her breast that was tattooed with a man’s name with an apostrophe: “Leo’s.” It was an announcement of ownership. He was the owner of her – or her breast – or maybe her heart.

She told me about finding out she had HIV when she pregnant with their first child.

There are highly effective ways to reduce the risk of transmission of HIV from mother to child if you know about it so Tennessee has mandatory HIV testing not once, but twice during pregnancy.

Leo was the father of her baby and the one who had infected her. He had known he had the disease, but never told her. She didn’t leave him. When I discharged her, she and her tattoo went home to him and their HIV-free child (thanks to mandatory testing).

I have had one HIV scare of my own. I had cold symptoms and broke out in an all over rash. My toddler had also been sick and had a rash around the same time, but it’s highly unusual for an adult to get a viral rash – it almost never happens. Adults get all the ‘rash-causing viruses’ as kids and then don’t get them again. HIV-seroconversion however, can cause an all over rash in adults.

When I got the rash, I thought back to a crazy night on the trauma unit a few weeks before when I had torn my gloves on a broken rib while putting in a chest tube. When the procedure was complete, I stripped off my gloves and noticed that I had some blood and an abrasion on one of my fingers. I brushed it off, used some hand gel and kept moving, but now that I had a rash I was thinking about it…

I knew we were going to start trying for another baby and so I went and got tested. I wasn’t too worried, but I definitely thought about how my life would change if it was positive.

It was negative.

I got pregnant shortly thereafter and still got both of my Tennessee-mandated HIV tests – happily.

In their revolutionary book, Half the Sky, Kristoff and WuDunn write:

Testing for HIV should become routine, requiring people to opt-out instead of to opt-in. That way nearly all adults would know their AIDS status, which is crucial, because it’s impossible to contain an epidemic when people do not know whether or not they have been infected.

I think it’s okay for a pastor’s wife who has no risk factors to have to get a blood test (or a cheek swab) so that someone who does have the disease and would not have otherwise have been tested can:

  1. Prevent others from becoming infected
  2. Add some more healthy years to his/her life.

I think the fact that we haven’t initiated widespread routine testing is a sad reflection of not only our opinions about the disease – but also our opinions about the segments of our society in which this disease is most common.

If an incurable, life-changing disease was being spread on elementary school playgrounds – or in church congregations all over the country – there would be public outcry to initiate mandatory testing. We would protect the uninfected by identifying the infected.

The movie Kids is one of the most disturbing films I have ever seen. It recounts a single day in the life of some reckless New York City kids who have no understanding of consequences. It shows in an uncomfortably, gritty way how one young man unknowingly infects one friend and exposes three others to HIV.

I felt physically ill watching it.  And afterwards it was like I had been infected with the knowledge that this could happen.

HIV is a disease that many people believe only affects the ‘sinners’ of our society – the promiscuous and IV drug users. I think people aren’t demanding widespread testing because they don’t care about ‘protecting’ the uninfected who are engaging in these ‘sinful’ behaviors – it’s like it’s the perceived natural consequence of their poor decisions.

I think Jimmy The Kid, Leo’s kid, and the kids from Kids would disagree.


Photo credit: Paula Bailey, Flikr, creative commons license.

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  1. Kat Kat

    You are an amazing thought provoking writer! I have always thought that hiv should be more tested then it is. Watching tv shows and movies that feel they are brave to broach the subject and feature people getting their first tests and I can’t help but think how odd it is they are showing highly at risk people getting their first tests well into their thirties. To me I’ve always thought being tested shouldn’t be a huge deal unless you know you’ve been exposed. As soon as I became sexually active I made sure I was getting tested. Imagine my surprise when my doctor treated me like I was wasting her time wanting to be tested yearly. To me that just seemed like what should be the standard. Sorry for my rambling, as you can probably tell this is a subject I’ve given a good amount of thought on myself.

  2. Kassi Kassi

    When you speak of people seeing HIV/AIDS infected people as ‘sinners’ somehow deserving this because of consequences of their behavior, I am reminded of 2 things.
    First, a child I used to know named Casey. He died of AIDS in those first terrible, ugly AIDS years. He was 10, and a
    hemophiliac … He got it through a blood transfusion. People were not cruel.
    Second, when I saw what was happening to the gay community, again during those first several uneducated years, I began to lose faith-not in God, but in other Christians. The vile hatred was coming from our Churches. I have never felt so alone as Christian, and so utterly disappointed in my fellow Christians.
    But you, Kristin, write with the lightest touch, creating a natural understanding and compassion for those who have been cast aside.
    Through your words, you give the underserved, the unseen, the
    dignity they deserve.

  3. This is a great argument, Kristin. You’ve taught me something. Thank you.

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