HIV Exceptionalism in Sierra Leone: An Interview with Adia Benton

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Anita Chary

Anita Chary

Anita Chary, MD PhD, is an anthropologist and resident physician at the Harvard Affiliated Emergency Medicine Residency. She is Research Director of the non-governmental organization Maya Health Alliance | Wuqu' Kawoq, which provides health care and development services in rural indigenous communities of Guatemala.


HIVexceptionalismbookcoverI recently read the book HIV Exceptionalism: Development through Disease in Sierra Leone, by Adia Benton, a medical anthropologist and Assistant Professor at Brown University. Benton provides an ethnographic account of why HIV/AIDS prevention and treatment programs proliferated in Sierra Leone in the 2000s, despite the country’s fairly low HIV prevalence rate (~1%) in comparison to other countries of sub-Saharan Africa. In Sierra Leone’s capital Freetown, the primary site of Benton’s fieldwork, thirty NGOs were operating internationally-funded HIV/AIDS prevention and care programs for a population of about one million people. The book explores how the logic of HIV exceptionalism—the idea that HIV/AIDS is an exceptional disease requiring an exceptional response—affects how these programs operate on the ground, how they are experienced by locals, and what they do to local health systems.


The book is a short and engaging read, and I’d recommend it to anyone with an interest in HIV/AIDS, development, post-conflict nations, and global health, particularly in sub-Saharan Africa. The following is part of a conversation that I had with Benton about the book.


Benton holds an MPH from Emory University and a PhD in anthropology from Harvard University. She has worked in the fields of gender-based violence, post-conflict development, child health, and HIV/AIDS in a variety of contexts including Sierra Leone, Nigeria, Kenya, Indonesia, and Nepal.

Benton holds an MPH from Emory University and a PhD in anthropology from Harvard University. She has worked in the fields of gender-based violence, post-conflict development, child health, and HIV/AIDS in a variety of contexts including Sierra Leone, Nigeria, Kenya, Indonesia, and Nepal.


Your book is titled “HIV exceptionalism.” What is HIV exceptionalism?


HIV exceptionalism is actually a term coined in the 1990s. It is a term that is widely used to refer to the fact that HIV/AIDS is an exceptional disease requiring an exceptional response. What that means, in effect, is that whatever seems to work in terms of social, political, economic, and health interventions can be applied to HIV as a problem. It means thinking of HIV as something that crosses many sectors—for example, gender, health, economics, and politics. And the way that HIV exceptionalism manifests itself in bureaucratic institutions is that there are staff, funding, programs, etc., that are primarily devoted to HIV as a public health problem, and as a social problem.


Your book is about your ethnographic field research in Sierra Leone, where HIV actually isn’t all that prevalent compared to other sub-Saharan African countries. But there is still a huge HIV industry serving the country. How did that come about, and how does that industry relate to this concept of HIV exceptionalism?


To some extent, there were specific Sierra Leonean factors related to that. There was an 11-year civil war period, during which there were high levels of sexual violence, amputations, and degraded health systems. The assumption at the time, or at least in the early 2000s, was that war generally increases HIV incidence and prevalence, and that HIV would be a major problem in Sierra Leone. So HIV programs were a natural kind of intervention at the time. There’s that piece, but there’s also that NGOs that were working in Sierra Leone in general were already doing HIV work worldwide, and particularly in sub-Saharan Africa. And so Sierra Leone was perceived to be in need not only because of the war, but also because that was the sort of general feeling in the aid community: that we should be addressing HIV, in terms of prevention and treatment, in a sub-Saharan African country.


A related concept—also part of your book title—is the idea that development occurs through disease in global health.


There is an interesting relationship between development and HIV, which is that HIV is seen to hamper development, but also that development interventions are a means through which one can address HIV prevalence, and that in part owes to this idea of HIV as exceptional. HIV often affects the most productive members of society, and if you think of productivity in terms of what kind of labor people can do, and how you can exploit that labor and generate income out of it, HIV would necessarily pose a threat to development, right? And the development industry and development programs are not only focused on creating economically productive bodies and populations, but they also see health as central to that project more generally. And so thinking about HIV in relation to development is something that’s a part of the Sierra Leonean state-building process and post-conflict rebuilding process.


What are some of the results that you seen of treating HIV as exceptional disease in Sierra Leone?


What ends up happening is that many people buy into that notion of HIV as exceptional, but they do so in a way that shapes whether and how other diseases matter. One of the negative effects of HIV exceptionalism has been building up and separating HIV capacity at the expense of other pressing issues. And this wasn’t the intention. The intention, in responding to HIV, was in part to also develop health systems—to do it by proxy. Because the ideal is that if you build HIV capacity to deal with HIV, you then have created capacity to deal with a bunch of other things. For example, you create surgical capacity to handle infection control, and all of that stuff would then feed into a larger system. But that’s not what happened. A lot of this has to do with funding mechanisms and donor priorities.


Then there is also the day-to-day reality of HIV exceptionalism. There’s a lot of work done, particularly in support and care programs, to develop HIV positive people. These kinds of programs demand certain kinds of people. Basically, there are certain kinds of techniques, certain kinds of things that HIV programs do. They require that people demonstrate their vulnerability, in a variety of ways, but they also have to show that they are self-sufficient. In many ways, HIV programs place certain kinds of demands on people who are HIV-positive. Because the people who use HIV programs feel some kind of pressure, an undue stress, to behave as the program asks them to—to disclose their HIV status, to show their vulnerability, to show their self-sufficiency. And there are many stakes involved. People who actually show they are both vulnerable and self-sufficient rise up through the ranks, in terms of access to certain kinds of goods, certain kinds of opportunities, in ways that people who aren’t really good at doing it will not be able to. It’s kind of a paradox. Being HIV-positive produces paradoxical forms of privilege. You shouldn’t have to be sick with HIV to receive good treatment, to get targeted care, to gain access to certain kinds of goods and services.


Do you see these dynamics—of demanding a certain type of behavior from program beneficiaries—as empowering, disempowering, somewhere in between?


I think it depends largely on the resources that the person brings to the table. Those people who are more eloquent, people who are more articulate, who have certain political or personal agendas, are very empowered by this. People who aren’t really buying into the agenda of fully embracing an HIV positive identity, I think it’s much more difficult for them. Because they end up navigating different resources, navigating a difficult terrain for themselves. So I think it can be either or both, depending on the characteristics of the person, the person’s social positioning, and his or her relationship to the disease.


How can programs avoid burdening beneficiaries with these sorts of responsibilities, and positioning them in such a way that they need to disclose their HIV status to get resources? What suggestions would you have for people on the ground engaged in this sort of work?


It’s going to sound a little bit old-fashioned, but one of the things that was always really promising was primary health care. You have to wonder how or whether HIV programs can actually be pulled back into a comprehensive care agenda. I think this might be more difficult in high prevalence places, but there’s evidence from places like Malawi and Mozambique—even in those high prevalence places—that HIV doesn’t need to stand alone. Rather, the capacity can be developed through HIV programs. So for example, HIV lab capacity can create other kinds of lab capacity. Support groups and care for people have chronic illnesses might benefit from the lessons learned from HIV. I think it’s time for us to think about how to better integrate HIV into more comprehensive care systems—more comprehensive and functional health systems.


Now that’s obviously much more difficult than it sounds. But I think that’s ultimately it. I think there are ways in which the institutions and structures that are part of HIV programs could actually be brought into the fold of health systems and into comprehensive care. So a support group can be for chronic illnesses and conditions, like diabetes, or hypertension, all these other things—not just HIV. I just think it’s a shame that for all of the really wonderful work that HIV programs have been doing and have set out to do, that they’ve also created this bifurcation, this wildly divergent set of outcomes across the world.


Do you feel like this dynamic of exceptionalism is apparent in any other global health programs, projects, or ideas?


I’ve been thinking about this a lot, especially because historians always ask me this question—for example, what about syphilis at the turn-of-the-century? Or polio? Or smallpox? We are in an age of different types of technologies. HIV might exceed what we have seen in the past. I think it might’ve been a perfect storm that created HIV exceptionalism. At the time of its discovery, we reached a point at which biomedicine had seemingly overcome and triumphed and could cure most ills, or at least treat lots of them. And so HIV seemed different, in that it attacked people who are of a certain age, of a certain class, and in a certain place, where activism coalesced with a health condition in a way that didn’t happen with say, various forms of cancer or syphilis. HIV exceptionalism dovetailed with activism and shaped institutions in ways that have never been seen before. For example, ACT UP was able to change the FDA’s process for approving drugs. Big pharma was challenged on drug pricing and patents. When has that ever happened? We have a conservative administration that gave millions and millions of dollars for a disease once associated with ‘immorality’ —I’m talking about the Bush administration—out of humanitarian impulse. We’ve never seen anything like that before. We’ve seen disease eradication programs, like smallpox, polio, but I think there’s another layer here that actually makes it exceptional. There’s a reason that Jim Curran, the Dean of the Public Health School at Emory, and one of the original epidemiologists working on AIDS, said, “AIDS is different, stupid!” Because it was. But now it’s not. And in fact, I think he also said that recently in a public discussion among ethicists.


I don’t think there’s anything else like HIV, but even HIV is not like it was before. There has to be some kind of shift in how people conceive of it. One of the points that I try to make the book is that because of the ways in which these programs have tried to inculcate, or create, or foster certain kinds of subjective experiences around HIV identity, it’s going to be more difficult than we ever expected to shift this way of thinking about HIV.


Do you think that there is a logic of exceptionalism operating around the Ebola epidemic? Do you think similar ideas are playing out?


Some of my friends said this about Ebola recently. I hate to place exceptionalism as a label on this. But Ebola did overtake everything else. At some point, by late August 2014, it was the biggest killer in Liberia. It was actually taking over everything else, if you were to look at data from previous years of what causes deaths in Liberia. Rightfully so, it overshadowed other aspects of health care, but at a detriment or loss for other things: like, ironically, HIV treatment and care; obstetric emergencies; general health care. I think Ebola was also an opportunity. And I hate using the word opportunity to talk about Ebola. But I think it was also an opportunity for people to step back and say hey, this is what happens when you have fragmented health systems, when you don’t have enough health workers. It was one of those things that revealed the limitations of how health work has been done, especially global health in these places over the past 10 or 15 years. I’m not sure what this realization is actually going to do, unless there is a concerted and serious effort to fundamentally change how health systems strengthening is done –because you’re not going to build health systems in just a few years. Health aid isn’t structured in such a way to fundamentally change how health care is done. We have international NGOs doing a good share of health programming. Not enough health workers are being trained, the facilities aren’t sufficient in number, they aren’t adequately stocked or staffed, and health worker compensation is disparate depending on the type of institution you work in.


This all harkens back to some of your critiques in the book. If HIV aid can be doled out differently, and actually help to build up health systems, then the problems we’re facing and the solutions we come up with in global health might look a lot different.


It could be. But to be clear, if we had 200 people with Ebola that we had to treat in in the US, I’m not sure how well we would do. And it’s not simply because we have a fragmented health system. It’s because the intensive care required to treat all of those people and have a high survival rate would be really time and labor intensive, and financially intensive. Making sure that all workers can do proper infection control and can protect themselves while administering treatment is important. We’ve faltered in that regard in some of our hospitals. I know someone who was treated for Ebola in the US. He says he had that around-the-clock care—pretty much that he had everything but the kitchen sink thrown at him to treat him. And he couldn’t have imagined that care in Monrovia, which is where he got sick. So, I wonder about whether we could handle that at a very large scale. The question is: would we have gotten to the point that the most affected countries got to? Probably not; we have minimized the spread here.


Certainly, it would have been helpful if public health systems had been functioning well early on in the epidemic. But that didn’t happen. In addition to health systems that provide treatment for illnesses, it means there also has to be a greater emphasis on actual public health functioning—the nitty-gritty of public health, which is really active surveillance. Grassroots surveillance. Health education and communications. Referral systems. But that all still requires something more than infrastructure and institutions. It also requires community trust in those systems to be able to work effectively.

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