The Joint United Nations Programme on HIV and AIDS estimates about 54,000 people live with the disease in Sierra Leone. The small, predominantly Muslim country on the tip of West Africa was ravaged by civil war throughout the 1990s and early 2000s, and more recently saw widespread cases of the Ebola virus during the 2014 outbreak in the region.
Northwestern University anthropologist Adia Benton started studying HIV prevalence in Sierra Leone while examining Liberian refugees and sexual violence as part of her Ph.D. research. Her 2015 book HIV Exceptionalism: Development Through Disease In Sierra Leone outlines the sheer response required to deal with the virus.
“It’s a disease like no other, requiring – often – separate funding streams, separate personnel, and other things that would segregate it from other forms of care,” Benton said.
Read Benton's Blog Ethnography 911
She told KGOU’s World Views that massive devotion of resources eventually eased over time, especially as the disease became less stigmatized during the 1990s and 2000s.
“As the condition became more manageable for people who had access to drugs, as there were more social services dedicated to people who were disabled or were unable to work as a result of their condition, it became less exceptional, and more amenable to being streamlined into other things,” Benton said.
She says conventional wisdom in the mid-2000s suggested HIV prevalence was higher in areas affected by conflict.
“This seemed to be true in places like Mozambique or Angola, but no one knew if this was true for other settings. In fact, in the middle of my research, it was proven that the link is not a direct one or an obvious one,” Benton said.
After a seroprevalence survey, which measures how widespread HIV is within a population, Benton said researchers discovered that figure was substantially lower than models had predicted.
“So my concern then was, OK, now what do we do? How do policymakers, how do officials in the health system, how do they manage this new knowledge?” Benton said.
Benton says it’s a hard sell, because non-governmental organizations, aid workers and other responders rely on HIV/AIDS being a significant problem to justify their work. As the disease became less problematic, Benton says anthropologists and aid workers shifted their focus from trying to change behaviors to understanding why these situations – like women being more at risk for HIV – occur.
“They’re not always able to negotiate condom use. Why might that be? And so a lot of the stories became, well, this is about understanding gender equality, or trying to strive for that. It’s about striving for economic equality between men and women,” Benton said. “So these got pulled in to HIV programs because I think health advocates and justice advocates were right, but also, I won’t say distracted, but were good at drawing the larger connections between disease risk and inequality.”
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FULL TRANSCRIPT
SUZETTE GRILLOT, HOST: Adia Benton, welcome to World Views.
ADIA BENTON: Thank you for having me.
GRILLOT: Well, you've written a book about Sierra Leone entitled HIV Exceptionalism. I just have to start, right off the bat, with the obvious question. What do you mean by that, HIV exceptionalism?
BENTON: Well, HIV exceptionalism is a phrase or term that was coined by early critics of a model which saw HIV as an exceptional disease requiring an exceptional response. And what does that mean? It means it's a disease like no other requiring, often, separate funding streams, separate personnel, and other things that would segregate it from other forms of care. And so that's basically the root of what I'm talking about in the book.
GRILLOT: So when you say it segregates that disease from others, because it is, as you suggest, exceptional, that means that it distracts us from other health concerns? I guess I'm trying to understand the negative. Are you using this in a negative way, in the sense that it's somehow distracting us from other diseases that are just as important? Or that all concerns in this country are health concerns? And we need to focus on all of them?
BENTON: So, I'm using it as a normative statement, in the sense that it's the way HIV programs are generally run in this era. So there was a point at which HIV did not receive a lot of separate funding. There was a point at which there weren't people who were specially trained to address the medical, clinical, social and economic considerations that are associated with an HIV diagnosis. But as a group of activists, clinicians, and public health advocates really pushed for extra money and extra, separate personnel, an attention to some of the issues that HIV brings to light - such as stigma, or really unique kinds of clinical manifestations of the disease. That's when these new kinds of institutions, funding streams, personnel kind of came about. So what I would say is it's a description of a situation about how people are addressing HIV/AIDS. And you can't really talk about HIV/AIDS without also talking about something like tuberculosis or other kinds of infections that come in if a person is immuno-compromised by HIV. So there's that. But one thing that we learned from our experiences in the '80s in the U.S., HIV also carried with it lots of stigma. Because it was associated with certain kinds of sexual orientations, and certain kinds of sexual practices. And so I think people are quite right to think of HIV as exceptional at the time. But as the condition became more manageable for people who had access to drugs, as there were more social services dedicated to people who were disabled or were unable to work as a result of their condition, it became less exceptional, and more amenable to being streamlined into other things. So what we found was, or what we see in the 2000s [is] what they call the post-treatment era. Those concerns of the 80s were carried over into programming elsewhere, which is to say addressing stigma, addressing say economic and equality for women. Addressing clinical care, or the lack of labs, or whatever became part of the HIV programming. So I'm not sure if that wraps it up, which is to say it's...
GRILLOT: Well, you've said a lot in the sense that I want to come back to some of the things that you said when you talked about health care advocates and health care workers. I definitely want to come back to that issue. But what I'm hearing you say is that this disease, HIV/AIDs, is obviously connected to a number of other diseases, on the one hand. But also another slate of issues and concerns. You mentioned inequality. And you've written about how health crises have an impact on other institutions within society. Socioeconomic and other political institutions. So can you kind of draw some greater connections? You just kind of mentioned them, but in what way are all of these things connected in terms of the diseases themselves having a greater impact on society and its institution?
BENTON: Hmmmm.
GRILLOT: It's a big question.
BENTON: That's a big question. So earlier work on HIV. When I'm talking about earlier work, I mean the '90s. We as anthropologists, but also people who are political scientists and economists turned away from trying to change behavior into looking at concerns of, OK, why are women at a greater disadvantage, or more at risk for HIV? They would say, 'Oh, it's clearly about women's unequal positions.' Well how are they unequally positioned in relation to men? Well they don't make, they're not always able to negotiate condom use. Why might that be? And so a lot of the stories became, well this is about understanding gender equality, or trying to strive for that. It's about striving for economic equality between men and women. So these got pulled in to HIV programs because I think health advocates and justice advocates were right, but also, I won't say distracted, but were good at drawing the larger connections between disease risk and inequality. And justice concerns.
GRILLOT: So access to the law. Access to education. Access to social services. Access to any kind of support. Obviously that kind of inequality is what you're talking about, and therefore has an impact on the disease and its impact on particular individuals. So the relationship is a two-way street in this regard.
BENTON: Right. Yes. So the disease risk is shaped by social, political, and economic things, and a person's ability to address the disease itself are also affected by their ability to access healthcare, to access education, etc.
GRILLOT: And to add to the mix here, I mean you're obviously studying a post-conflict area. So I have to ask you why Sierra Leone? Why have you spent so much time there? Why a book out Sierra Leone on this subject? Because I would imagine there are a number of other places that you could also study, and so kind of coming at it from that perspective, the post-conflict development perspective, and the healthcare crises that are magnified, I guess, by that. How is Sierra Leone set apart, or is it? Or is it similar to other post-conflict areas and the impact of this disease and other diseases on their development?
BENTON: So I got to Sierra Leone a little bit by accident. When I was applying to my Ph.D. program I happened to be working there on a conflict issue on Liberian refugee women who are experiencing or addressing the issue of sexual violence. War-related and otherwise. And so as I was there, I started to see a lot of sort-of post-conflict rebuilding and reconstruction efforts that were built around health were looking at certain kinds of diseases. And HIV was one of them. And the conventional wisdom at the time was that conflict-affected would have higher HIV prevalence. And this seemed to be true like Mozambique or Angola, but no one knew if this was true for other settings. And in fact, in the middle of my research, it was proven that the link is not a direct one or an obvious one, right? So some places actually had lower HIV prevalence than one would expect based upon regional figures. And some had higher. And so the question then becomes, 'Is it conflict itself, or some other kinds of dynamics within conflict-affected societies that shapes HIV risk? And the answer no one really knows. But even after that knowledge, that information was circulated, the idea in Sierra Leone was that you still had to, there must be HIV. And so a lot of the earlier programming in the post-conflict moment focused on how do we prevent this greater spread? Or how do we address all of the people who must have it? And what ended up happening was when they did the seroprevalence survey, which is a survey to find out how much HIV is in a population, they discovered that it was actually substantially lower than they had predicted on the basis of statistical modeling. So my concern then was, OK, now what do we do? How do policymakers, how do officials in the health system, how do they manage this new knowledge? And does it affect how they address the issue of HIV?
GRILLOT: And the answer is?
BENTON: And the answer is.
GRILLOT: It sounds to me like you have an answer.
BENTON: I hope I do. I guess the answer is that it’s hard to backtrack when you've made the case that HIV is significant. Because it has a kind of moral weight as an infection, or as a disease. It's hard to backtrack, because lots of funding depends on financing of healthcare, depends on HIV being a significant problem. In fact, that's one of the most heavily funded diseases probably in the history of diseases. So it's a hard sell, In fact, it was an object of conflict, because even when those are low, folks wanted to believe that they were high.
GRILLOT: It justified their work there.
BENTON: It justified their work, but it also justified what was conventional knowledge, or conventional wisdom at the time, which is that war changes everything.
GRILLOT: So these perspectives, and I think this gets back to this relationship with NGO workers and healthcare advocates, and others that are more or less coming in to the area to address a lot of this. And you mentioned the funding and all of that. We know that non-governmental organizations are busily at work across the continent of Africa. And they bring with them a significant amount of funding from various agencies. And so you're right, they kind of have to interpret the data in some ways to help support their work. But can you tell us, from your perspective, how effective these workers are? How effective these organizations are in terms of coming in to the region and trying to manage these problems, and perhaps bringing with them these skewed perspectives?
BENTON: So I should add that some of the conflict came from local activists and local health officials, which was very interesting. In fact, the CDC numbers were the ones that showed the lower prevalence. So I had, and I write about this in the book, a Ministry of Health official who works in the statistics office, he said we actually have to do another survey, because we weren't sure that the CDC did it right.
GRILLOT: And so what is their motivation for the local healthcare workers? Again, is it tied to resources?
BENTON: Well, to some extent I think it’s tied to resources, but it's also tied to, again, the conventional wisdom about...
GRILLOT: Not being able to get away from that mindset, yeah.
BENTON: Which is, I think is a really hard thing to believe. We're talking about high rates of sexual violence. We're talking about troops that came in from other high-prevalence countries who were very much involved in the sex trade and they have sex with local women and men. So it doesn't sound preposterous for there to have been some sort of higher prevalence. So I think the first bit was trying to reckon with that disparity that they saw. But the truth is, HIV care money can buttress other things. It can strengthen other systems. And I'm not sure that was ever going to be the case in Sierra Leone because of how narrowly funneled the money was. But they do, the amount of money being brought into the country by HIV work was definitely, it had the potential to develop people who were more skilled at monitoring evaluation work, or doing research on HIV-related stuff. It had the potential to make labs better. It had the potential to build counseling services. It had the potential to do a whole bunch of other things. Now, my concern was that it didn't do all of that, right? So the people who were working on HIV only worked on HIV. And some of them got bored because there aren't a lot of cases, but also because the same problems would come up again and again. Oh, the PCR machine isn't working.
GRILLOT: So the day-to-day work versus the ultimate problem. So just very quickly in the last 30 seconds that we have, what is it that we really need to know about this issue? Because I think a lot of us feel kind of helpless and hopeless about these particular health crises in the region.
BENTON: So I would say that we should think about better attention to building health systems. So rather than focusing on specific disease and specific conditions, we need to think about what it means to build health systems, what it means to build robust health systems that are properly staffed. Systems that have the appropriate infrastructure. Systems that are capable of reaching the most vulnerable. And that's something that's very difficult to do. We don't even have it here.
GRILLOT: Well therein lies the challenge. Alright, thank you so much Adia. Thank you for being with us today. Thank you.
BENTON: Thank you.
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