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November 15, 2004
New book explores societal reactions to emerging illness

BY Tia Webster

How do social, political and economic factors determine the amount of public attention and research funding a disease attracts? In other words, how do certain diseases “emerge” onto the public health agenda?

Some illnesses, like Lyme disease, have prompted a great deal of public health research and community awareness campaigns. Other diseases, like Hepatitis C—an extremely widespread infection—receive comparatively little attention. And still others, like sick building syndrome or community clusters of illnesses possibly related to environmental toxic exposures, are hotly contested but ultimately claim little support.

An interdisciplinary group of researchers, including three faculty editors from Emory, have collaborated on the book, Emerging Illnesses and Society: Negotiating the Public Health Agenda (Johns Hopkins University Press, 2004), a volume that uses 13 historical and contemporary case studies to examine how new diseases are championed by certain groups and ultimately work their way onto the public health agenda.

The book suggests five factors that may determine why some illnesses attract funding and advocates while others remain obscure and neglected. They are:
• the social standing of the people affected by the illness.
• the level of community activism.
• epidemiological characteristics of the illness.
• the availability of clear diagnostic guidelines or tests.
• media coverage of the problem.

Along with the case study authors, the editors attempt to develop a “big picture” of these social and political processes that occur in bringing certain health problems to the forefront.

The contrast between the histories of Lyme disease and Hepatitis C is instructive. Among the first identified victims of Lyme disease were wealthy people (and medical researchers) who vacationed in places like Nantucket or lived on large, dispersed parcels of land five acres or larger. Living in areas of five-acre zoning thus was identified as a risk factor. Several citizen action groups around the problem of Lyme disease were formed, demanding media attention, medical research and more funding.

In contrast, Hepatitis C (once called Non-A/Non-B Hepatitis) has received very little attention, in large part because many of the people who suffer from the disease are poor and cannot organize into citizen action groups.

The historical experience of AIDS activism, including the memorable public tactics of groups like ACT-UP, was also instructive, the book says. Members of the “community of suffering” ultimately received a seat at the table where health policy and funding decisions were made. What is less well known are the historical examples of how illnesses like multiple sclerosis and Tourette’s syndrome achieved medical and mass-media attention.

“We used the different examples in the book to understand how communities of suffering push their problem up onto the public health agenda—sometimes with the media’s help—while at the same time the public health institutions have to respond to those public demands and try to maintain some balance with their other priorities,” said Peter Brown, one of the book’s editors. Brown is professor of anthropology and international health and co-director of the Center for Health, Culture and Society in the Rollins School of Public Health.

“Without an interdisciplinary conversation, people tend to think only within the confines of their particular public health problem, disease or issue,” Brown said. “We wouldn’t have been able to see the whole picture of the larger social processes if we didn’t have historians, epidemiologists, health activists and social scientists, these different experts, talking around the same table.”Other Emory professors who co-edited the book were Ruth Berkelman, professor of epidemiology and director of the Center for Public Health Preparedness and Research; and Howard Frumkin, professor and chair of environmental and occupational health. Randall Packard, formerly of Emory and currently director of the Institute for the History of Medicine at Johns Hopkins University, also was an editor.

Finally, Howard Kushner, professor of behavioral science and health education, is a contributing author. Along with Brown, Kushner is the co-director of the Center for Health, Culture and Society.

 

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