June 10, 2008

Suka ukulinda!

Lately, I’ve been finding myself encountering people who fail to take adequate command of their health. This is particularly evident in HIV-positive people who fail to have their blood drawn for regular CD4 counts, a crucial indicator of how much the virus is affecting them and the determinant for whether the person can qualify for free, life-prolonging, anti-retroviral treatment.

I noted in passing about Nosisi that when she came into the clinic, weak and thin, it had been 18-months since her last CD4 count. HIV patients are supposed to have a count every six months. While I don’t like to be uncharitable about the dead, I did find myself thinking while I was interacting with Nosisi about how the situation could have been different if she had had a CD4 count a year ago when she was due. For one thing, she likely would have been a lot stronger and better able to fend for herself so she wouldn’t have needed my help at all. She could have walked to the government clinic that does CD4 counts and had her blood drawn. Her count would have almost certainly been under 200 since it had been that low 18 months ago and she could have begun ARV treatment as a relatively healthy person. Instead, it wasn’t until she was near death’s door, with a CD4 count of 44, that she came to us and we could begin to help her. By then, as I have seen before, it was too little, too late.

Why do people do this? Why do people rationally make a decision that is entirely irrational? This is their health we are talking about, one of the most important factors in their life success, and yet that health is routinely and comprehensively neglected in a way that boggles my mind. I know people persist in other behaviours that harm their health, like smoking or alcohol consumption but those can be explained away by addiction. But what explains the situation here? Is it apathy? Denial about the state they are in? Ignorance of their options?

I don’t have the answers - though I think denial and ignorance play a huge role - but I raise the questions for a couple reasons.

First, it points to an important obstacle to addressing the HIV epidemic. Plainly, governments and aid organizations can roll out ARV programs and no matter how well-funded they are, the money alone will not solve the problem. There needs to be some sort of education component to go with it, which there is here but it is clearly not reaching everyone. What we need more of is relationships. More people will begin to take ARVs when their friends and role models are talking openly about the importance of taking them. That is something I can do - and that I do do - but it is also something all South Africans can be doing as well, particularly those who are successfully taking the pills.

Second, it again brings up the question of what the missionary’s role should be in all this. There are other people in Nosisi’s position in Itipini, who are overdue for CD4 counts and should get them now so they can monitor their health. I believe in empowerment and not “meddling” too much as a missionary. Is it my job to seek these people out, drag them to the clinic, and make them get a count? Wouldn’t that take energy from my other efforts, some of which are directed towards helping people like Nosisi who waited too long? And isn’t there something offensively paternalistic about the belief that I know better about their health than they do? Shouldn’t I just butt out and let them live their own lives? When they want help they know where to come.

For the record, I do not roam Itipini with a checklist and play CD4 count truant officer (I am too busy playing pre-school truant officer) but nor do I let people pass by unnoticed. In the clinic, when a HIV-positive patient comes in for another concern, we check to see when their last CD4 count was and encourage them to get one if the time is right. But that misses a big chunk of people (mainly men) who rarely darken the door of the clinic until they are as sick as Nosisi was. And we can’t force someone who doesn’t want a count to get one. I seem to hear a lot of “ngomso” (tomorrow) when I bring the subject up. My response is the title of this post - don’t wait!

HIV is life-changing. My impression right now is that not enough people adequately grasp just how they need to change their behaviour and attitude towards their own health as a result of their positive test. Part of me wants to say to these people, “Well, live and learn.” But, as I’ve written before, what happens when they don’t live?

Let me conclude with a happier story. The woman in this picture is named Nomanesi and she is holding the anti-retroviral “cocktail” she began to take last Thursday.
I was shocked when I looked at her medical records to see just how rapidly her life had changed. She tested positive for HIV on April 10. Her CD4 count results were returned on April 24. The count was 116 so she qualified for ARVs. She immediately began the process to qualify for those ARVs and a little more than a month later - June 5 - she was taking her first pills that she will take every day for the rest of her life. Our role at the clinic was minimal. We did the initial HIV test and gave her taxi money to get to the hospital for a required chest x-ray. Otherwise, she was acting completely of her own volition and the impetus during the entire process was her own.

What I want to know is how we can get more Nomanesis in this world and fewer Nosisis.


Heidi said...

Jesse, maybe I missed this somewhere along the way, but so many of your posts -- about HIV, your coworkers, students -- are about women. Where are the men?

Anonymous said...


I came across your blog because I'm working on a short video that will air at a concert in Los Angeles benefiting Itipini. I can relate to many of your questions and struggles, as I've spent the better part of the last 3 years working in the slums of India.

I think a media project like Lok Darshan would do wonders for your attempts to educate and change behaviors in Itipini on HIV/AIDS. It did well in India in shifting awareness and action around tuberculosis in the slum we worked in.