Stigma

Prior to coming to Malawi, all we rotators got a little booklet of information, which we all dutifully printed out and arrived off the plane clutchingly tightly to our chests. Most of it is dermatology information, but there's also a bit in the way of useful Chichewa phrases ("Kuyabwa?" = "Itchy?") and some general cultural info about Malawian society. One of the paragraphs that caught my eye was dedicated to manners and social graces. Malawians are very polite, it said. They prefer to ask questions in euphimistic terms and may sometimes answer questions with what they percieve to be the answer that the questioner wants, rather than the truth.

I'm always skeptical of texts that label a whole people as polite, or brusque, or any personality trait for that matter. But I have noticed that particularly in relation to more delicate medical questions, some of our medical conversations in clinic don't go very easily. With sick babies or children, for example, we're taught in the United States to inquire whether the kid is still urinating normally, or producing the same number of wet diapers - it's a good way to tell whether the child is dehydrated. (Less in, less out.) But the Malawian nurse who helps translate our questions is always reluctant to ask this question of patients; I get the impression he considers it rude. I've been trying to work around it by asking more questions about eating, and whether the child is lethargic or sleepy, which seem to be acceptably polite, but it's not quite the same information.

And then there's the HIV question. Even in the US, of course, this is a tricky question to ask. But there are quite a few skin conditions that really only exist in HIV+ patients; it's important to know their status, whether postive, negative, or unknown, so that you can begin to narrow down what exactly those itchy bumps are.

We had two or three female patients yesterday with rather severe itchy bumps (later diagnosed as a "papular pruritic eruption" - not fun), each of whom looked so classic for a HIV-related rash that we immediately asked for her HIV status. Each woman quickly replied that she was negative for HIV, and that she'd been tested within the past month or so. Huh, we said. What else could it be? We hemmed and hawed for a bit, then wondered if it might be a reaction to another drug she'd recently taken. Each Malawian carries a little notebook with a handwritten record of all her medical visits, so we quickly paged through past encounter notes, looking for clues. And for each of the three women, we saw CD4 cell counts and a "reactive" HIV test - pretty much knockdown evidence that they were HIV+.

And so we awkwardly asked again - was she SURE she wasn't HIV+? Two women quietly replied that, indeed they were. And that was the end of it - no explanation for the initial denial. We took it in stride and set about getting her medicines set up. But the third woman continued to reply that she was negative, despite a positive test two years prior and multiple appointments afterwards at an HIV center. By the cell counts written in her book, she was actually even a candidate to begin anti-retroviral therapy, or ART. (Malawian hospitals don't begin treatment for HIV until patients reach a certain nadir in their immune systems.) But there had either been a complete breakdown in communication in her encounters with the HIV center, or she was purposefully choosing to provide us with false information.

Having three of these encounters in a single morning, it was hard for me to pick apart how much of this was personal denial versus social avoidance of impolite subjects versus the overwhelming stigma still attached to HIV in East Africa (and everywhere else in the world, honestly). About 11-12% of Malawi's population is thought to be HIV+. The government finally started providing ART about 5 years ago, and health outcomes have certainly improved, but it seems like medical treatment can only take a country so far if there's still such a social and personal reluctance to acknowledge one's condition publicly and seek treatment.

And speaking of stigma - it's Albinism Awareness Day today at Kamuzu Central Hospital! No doubt you have heard about it on the TV and radio. We have been advertising heavily. Word is that whole bus-fulls of folks are coming north from Dedza just for the event. Very exciting. Looking forward to giving out lots and lots of sunblock and sensible wide-brimmed hats.