Interviewing Aaron P. Mauck: The Policy of Ebola, Biomarkers, and Medical Narratives
HHPR editor, Shayla Partridge, had the opportunity to interview Aaron Pascal Mauck, a brilliant Historian of Medicine and currently a lecturer in the Departments of Social Studies and the History of Science at Harvard College. Dr. Mauck wrote his PhD dissertation on the history of diabetes management in the United States and his most recent research focuses on the history and applications of biomarkers and the ramifications of the Ebola epidemic.
HHPR: Earlier this year I heard you discuss the Ebola epidemic…you mentioned doing research?
APM: I’m still doing a little bit of that research, you know, because it’s still an evolving disease threat. It’s challenging when you’re in the middle of something to see how it’s going to develop. Because it’s an ongoing condition. I think we’re now in a position where it has to be understood as…endemic to the region and rooted in the kind of structural inequalities that are there. As historians and social scientists…we need to assess much more carefully than we have done so far the root causes of this, and situate them in historical perspective. I think one of the things that’s central for me is to move beyond our common refrain as social scientists, which is the: ‘well it’s a complicated, holistic problem.’ Because I think we all acknowledge that it is a complicated, holistic problem, but policymakers, boots on the ground…they can’t deal with that. They can be cognizant of [complexity], but we have to have targeted interventions. For those of us interested in developing more complex models of disease causation, we need to figure out how to frame that complexity in ways that can be packaged. That we can use.
HHPR: People are now saying that this is an important moment for infrastructural change. What do you see as the potential for the strengthening, or do you see weakening, of resources at this point in the epidemic?
APM: People have said we are at a turning point before. It does raise awareness of the problem, and in theory when you have heightened interest and heightened attention, there’s room for change. However, the public is fickle, and public anxiety was at its pinnacle when there was a concern that [Ebola] was going to leave the shores of Africa and invade our country. As soon as that perceived risk diminished, the issue sort of fell off the radar. So advocacy has to be the key: we have to remind people that the epidemic is still going on. My concern is that… unfortunately, attention often seems to be zero-sum. Funds have to be directed, there has to be somebody thinking about how to allocate those resources and how to allocate them efficiently. The lesson with Haiti post-earthquake was in part that resources without direction can actually cause trouble than they resolve because they can cause allocation problems. Less is sometimes more, as long as resources are directed correctly. And I think with Ebola the same issue arises: constructing a carefully organized, rational response turns out to be as important as anything. My concern is that Ebola, though a significant disease threat with high mortality, masks some of the other health issues that we want to effectively address. It encourages people to focus fairly directly on one site of disease transmission, at the expense of the broader social medicine framework that we would want to put in place.
HHPR: It’s interesting to hear you talk about the idea of attention being devoted to one thing versus another – I wanted to ask about the idea of being socialized for scarcity: that if we’re putting our resources into Ebola, we’re not putting our resources into something else. How does this concept of socialization for scarcity, in terms of attention or otherwise, dictate our response to epidemics like Ebola?
APM: I think it underscores the point that maybe what we need to do…is try to re-socialize people to prioritize addressing problems of basic human suffering and disease, and addressing them in a global perspective. In the short run, though, we work under conditions of scarcity. What ends up being highlighted are things that are perceived as immediate disease threats to individuals in the Global North or in wealthier countries, at the expense of the mundane but deadly diseases that people in economically impoverished environments confront every day. Trying to get people worried about diarrheal disease is very hard to do. You should be able to: it kills a lot of children, it’s destructive, and is an eminently addressable global health problem. But trying to sell it is hard. Even, for instance, malaria, was radically hard to sell for a long time. And getting attention back on to malaria, to the problem of nets, etc. was a long struggle in a lot of ways. It says a lot that we’ve been able to do it, and that now there is a lot of attention paid to malaria.
HHPR: Do you think you could identify what made us so able to focus on something like malaria?
APM: It had been a central concern of some global health advocates for a very long time, and obviously the WHO had an active malaria eradication campaign during the fifties and sixties. But the post-campaign era was one of embarrassment after the WHO decided to abandon the program. There was almost no action on this problem throughout the 70s. I think there was a growing recognition by the 90s that problem hadn’t been remotely attended to, but that recognition came from NGOs and advocacy organizations, and did not come from governments. It was the fact of high malarial morbidity, and the idea that malaria was an eminently controllable disease that prompted global health advocates to take it up again. Its consequences could be minimized, and it could be controlled— like most diseases. To me, the focus on disease “eradication” often enough comes at the expense of attenuation or control. I understand the logic: if you eradicate a disease, you eradicate it forever. But we may be better off focusing on controlling the things that are characteristic of disease – which are suffering and death.
HHPR: I’d love to hear more about your new work/research on biomarkers and all of the ways you see this type of concept going towards it’s various applications.
APM: One of the things that started to interest me in this research is how we model the early stages of disease processes, and what we want to get out of that modeling. People now want to look at the complex arrangements of factors that go into making many chronic and infectious diseases. So the effects of stress for instance, and how stress leads to heart disease or diabetes. To do this you have to develop a mechanistic understanding of the pathways involved. So I’ve been very interested in tracing out the histories of those understandings, and also asking what we want to get from our origin stories about disease. One of the things that comes out of the biomarker paradigm is the idea that if only we can get a good, scientifically grounded causal story about how things like poverty directly affect health through targeted biological mechanisms, then people will get on board with poverty alleviation. I tend to think of the world of public health and policy in more complex terms. I’d like it to be the case that if you told a good scientific story you’d get policy. But I think the story of climate change has, to me, confirmed that good science does not necessarily lead to good policy at all. There is often a pretty significant short circuit of scientific data because of the conditions of power and politics. That means that you’re going to have to do more than just have good science and have a good model of cause and effect. We have to have a more nuanced and broader account of these kinds of consequences of poverty if we’re going to make our case.
HHPR: In your dissertation you discuss aligning clinical, epidemiological, and political approaches, and I wanted to hear what you thought about this in the context of drug pricing (i.e: Sovaldi for Hepatitis C). How could an aligned approach be applied to the drug industry?
APM: The pharmaceutical market worries about epidemiological data insofar as it worries about its market share and how big its market is going to be. But in attempts to lower drug prices, drug companies encounter practical constraints, and we need to find ways of incentivizing them. Getting drugs into bodies proves to be an enormous problem from a practical point of view, and I think it is ultimately a downstream problem of alignment. The upstream problem of alignment requires us to devise, for governments, new ways of understanding their overall medical systems, and responding to perceived inequities or inefficiencies in their medical systems as a whole. I think a lot of NGOs are moving in this direction. In the 1990s and 2000s, a lot of the NGOs were interested in targeted disease interventions – you can take big target diseases like malaria and seek to address them. I think what has happened recently is an interest in moving away from that to focus on how health systems work. But how do you sell health systems improvement to governments? How do you sell it as an NGO project? It means things like having better preventative services, or better basic public health, and it means coordination at a level that we don’t currently have. And I think that’s what we’re going to have to think about when we consider alignment. The kind of alignment that I was talking about concerns constructing new strategies for promoting a holistic understanding of disease to the public. I think you can promote it, and I think one of the ways you can do so is to use narrative: to tell stories about how inequities in existing health systems lead to disease in path-dependent ways from day one. I think part of the story of biomarkers is a story of illustrating how these proto-disease processes, linked to not getting adequate nutrition, or not getting a check-up, or living under conditions of poverty, pollution, or stress, end up forty years later leading to breast cancer or leading to hypertension. Those kinds of narratives are available to us…and the power of narrative is as resonant as the power of focusing on a single disease.
HHPR: And you believe that would translate into policy more effectively?
APM: Statistics seldom translate into policy easily, but stories do.
About the Author
Aaron Mauck is a Lecturer in the Departments of Social Studies and the History of Science. He received his BA in Anthropology from Reed College in 1999, his MA in Sociology and Science Studies from the University of California, San Diego in 2004, and his PhD in the History of Science from Harvard University in 2010. From 2010-2012, he has served as a Robert Wood Johnson Health and Society Scholar at the University of Michigan. His research interests include the history and anthropology of chronic disease, science and technology studies, and national & international health policy. His first book, Typing Diabetes: Diagnostic Ambiguity and Clinical Practice in the Twentieth Century, will be published in 2015. He is currently undertaking a second book exploring the history of biomarker research in medicine and social science.