Two Doctoral Fellows, funded by a grant from the Mellon Foundation, were chosen by CSHCS and  participated in the final two semesters of the seminar.  They were Kendra Hatfield-Timajchy, (Department of Anthropology) and Marcia Owens (Department of Educational Studies). Their refections of their participation in the seminar follow. 
 
 
 

Reports of Post Doctoral Fellows	Reports of Doctoral Fellows
Sandy Smith-Nonini Colin Talley	Kendra Hatfield-Timajchy Marcia Owens

Report of Sandy Smith-Nonini, PhD,
Post-doctoral fellow, Spring 1999, Sawyer Seminar

"The Cultural Politics of Institutional Responses to Resurgent TB"

As a post-doctoral fellow at the Center I have been studying the cultural politics of public health institutions' responses to resurgent tuberculosis in the 1990s. I am comparing a case in the "developed" world -- the 1990-95 New York City epidemic, with a case in a "Third World" setting -- an ongoing outbreak of drug-resistant TB in Lima, Peru. 

TB is a disease of poverty. There is no magical bullet for prevention or cure of TB, management of the disease depends on a high level of public health collaboration with the medical establishment, and 
with the public. A study of institutional responses to TB, therefore, reveals much about the relations (and ideologies) of "development" and "underdevelopment," both in the U.S. and abroad. 

The New York epidemic of the 1990s grew out of the dismantling of the city's public health infrastructure in the 1970s and 1980s. As with mental health, inpatient facilities for TB were discontinued without sufficient infrastructure for outpatient treatment. Reagan-era block grants allowed states and cities to divert funds to other uses at a time when medical authorities prematurely announced they had won the fight against TB. 

The incidence of TB in the city crept upward again after 1978. Homelessness shelters became focal points of TB transmission. The city's TB patients were disproportionately male and non-White, with high numbers of HIV positive patients, recent immigrants and IV drug users. In part due to poverty, few patients were completing TB treatment programs, a fact that the health department's own statistics showed. But, health officials, preoccupied with the AIDS crisis, paid little attention. As Margaret Hamburg, a former Commissioner of Health for the city later put it, "until 1990, TB wasn't on the health department's radar screen." 

A community-based approach called "Directly Observed Therapy" (health workers visit patients at home to improve compliance) had proven successful in other settings, and was recommended to New York City by the CDC. But until 1991 the city's officials favored traditional approaches to TB treatment  which placed full responsibility for compliance with the patient, not health providers. Their stance reflected U.S. physicians' historic position on TB treatment, in contrast to other developed countries where DOT has been more widely accepted. 

The surge in funding for TB in New York after 1991 only came after the spread of the disease to middle class patients, who had more vocal constituencies. It also was spurred by public fear over new findings that one third of TB patients in the city had developed resistance to TB drugs through failing to complete treatment programs. Large scale adoption of DOT was one of the reforms credited with bringing TB under control in New York by 1995. 

The slow response of New York authorities was not an isolated case -- a similar process went on at the federal level. In 1987 CDC officials responded to the return of TB in many U.S. cities by developing a new plan for TB "elimination."  However, another five years would pass before federal funds for TB increased significantly. 

The resurgence of tuberculosis in the industrialized world has drawn new attention to the enormous health problem that TB presents to poorer countries  where 3 million people die and 8 million new infections occur each year. TB causes more deaths than any other infectious disease agent in the world, and disables many more people. Most AIDS patients worldwide now die of TB. But TB programs have been chronically underfunded, and even today, despite the promise of WHO's thrust in the 1990s to establish DOTS programs, only 16% of patients with TB worldwide have access to such a program. 

In the last 3-4 years drug-resistant TB has emerged as a potentially major international health threat. But, no agency has yet pronounced MDRTB a major priority. Dr. Paul Farmer, who has experience 
treating TB in NGO programs in Haiti and Peru, has been a vocal advocate for taking MDRTB seriously. His concern is that in areas where drug-resistance exists in the population, existing WHO-approved DOTS 
strategies of re-enrolling patients who formerly dropped out of therapy and treating them with the same drugs a second time may actually be amplifying drug-resistance. 

A new survey of drug resistance in the world commissioned by WHO  suggests that in fact, pockets of MDRTB exist in many countries. This survey, conducted in 35 settings found drug resistance in every country and region surveyed (Pablos-Mendez, et. Al 1998). The study identified MDRTB "hot zones" in Russia, Estonia, Latvia, the Dominican Republic and Argentina. The WHO has estimated that 50 million people may be infected with drug-resistant TB strains already, and the problem may be growing rapidly  with drug resistance developing in 10% of the 8 million new TB infections occurring each year. 

One reason major health agencies have been reluctant to declare MDRTB a priority appears to be development experts' conviction that funding in health is a "zero-sum" game. Since treating MDRTB is expensive and new funding hard to come by, to declare MDRTB a major problem would lead to diversion of funds from programs for drug-susceptible disease which are considered already underfunded. 

Farmer has been calling attention to his programs' successes in community-based approaches to treatment of MDRTB in poor populations.  But many international health experts see this model, which uses state-of-the-art curative therapy and strong physician oversight, as too difficult to replicate in other Third World settings. However a consensus is emerging that a first step to dealing with MDRTB should be to conduct trial treatment programs in a few MDRTB "hot-spots," with the goal of finding a treatment regimen and protocol that can be reproduced easily in other settings. In June I will be traveling to Peru (w/ Ford Foundation funding) to study the differences between Farmer's model (carried out by Socios en Salud, an NGO in a Lima barrio) and that of the country's WHO-approved National TB Program, which is also conducting trials on treatment of MDRTB patients. 

Recent experiences with TB (and AIDS) on the domestic scene provide strong arguments for strengthening and centralizing infectious disease oversight, for a more community-focused definition of health and for more oversight of medical services.  The fact that MDRTB arises in places where medical services exist, but function poorly (eg. Inadequate access to services and drugs and/or "therapeutic anarchy"), also challenges the traditional divide between palliative care and prevention. 

The experience of resurgent TB has also generated new debates over how strongly public health officials should advocate for funds to address emergent health crises. Funding of TB programs increasingly depends on public attention being drawn to the issue. This is made more acute by the general retrenchment that neoliberal politics has generated in the public health programs worldwide. 

Recently the WHO has taken advantage of the transnational aspects of the NY epidemic (eg. increased migration and the fact that TB can be transmitted on airplanes) to emphasize in press conferences that the TB is a global public health problem that cannot be ignored by industrialized countries. 
 

Report of Colin Talley, PhD,
Sawyer Seminar Post-Doctoral Fellow
Fall 1998

While at Emory I analyzed the response of one institute, the National Institute for Neurological Diseases and Blindness, to an emerging ecology of chronic diseases after World War II.  Specifically I studied the minutes of the National Advisory Council on Neurological Diseases and Blindness meetings from 1950 to 1960 seeking to understand the relationship between private voluntary health organizations and the National Institutes of Health in the United States.

As part of this larger project of understanding the relationship between lay health initiatives and scientific research, I also researched and wrote a paper on the relationship between the private Commonwealth Fund and scientific research on multiple sclerosis during the 1920s and 1940s in the United States.  I presented this paper the History of Medicine Group at Emory University on September 17, 1998.  I presented a revised version of the paper at the national meeting of the History of Science Society in Kansas City, Missouri on October 23, 1998.

In addition I researched and wrote a paper entitled "The Combined Efforts of Community and Science: American Culture, Patient Activism, and the Increase in Biomedical Research on Multiple Sclerosis in the United States, 1946 to 1960.”  I submitted this paper for consideration for publication to the academic journal ISIS.

I also wrote a paper entitled "The Rise of MS as a Disease Problem in the United States, 1870 to 1960,” and submitted it to the academic journal, BULLETIN OF THE HISTORY OF MEDICINE.

Finally, I participated actively in the Sawyer Seminar on medicine, public health, patients and the environment.

My experience at the Center for the Study of Health, Culture, and Society was very rewarding.  I found the seminar stimulating, the working environment productive, and the faculty and graduate students extraordinary.  The Center for the Study of Health, Culture, and Society is the national leader in the interdisciplinary study of health, culture, and society. The faculty at the CSHCS are breaking new intellectual ground, producing innovative and practical knowledge,  and offering fresh perspectives on serious medical questions. The CSHCS deserves to be generously supported.
 
 
 

Report of Kendra Hatfield-Timajchy
Sawyer Seminar Postdoctoral Fellow
1998-1999 Academic Year

The Sawyer Seminar on “Emerging Illnesses and Institutional Responses” highlighted the struggle faced by biomedical practitioners, public health officials, journalists and politicians in garnering attention and support for emerging illnesses. The common theme of each presentation concerned the adversarial social and political environment characterizing most institutional responses. What was most refreshing about the presentations was that each presenter characterized the difficulties they encountered on a personal as well as institutional level. Thus, each presenter demonstrated a certain level of humanness not normally seen in graduate level courses. The obstacles encountered by the presenters and their ability to overcome them, demonstrated a personal level of resourcefulness and a willingness to take on institutional challenges that at points were quite inspiring. At the risk of sounding too enthusiastic, I would like to congratulate the organizers for convening a seminar that presented and dealt with real world problems and solutions concerning emerging illness. As a graduate student and CDC employee, I face similar challenges in gathering support for my own research on systemic lupus erythematosus. The most important lesson that the Sawyer seminar demonstrated was that scientific inquiry and advancement takes place only when individuals are willing to stand up for their convictions even in the face of personal and institutional resistance.

There were two sessions during the semester that were particularly interesting: 1) the Congressional Responses to Emerging Illness; and 2) the Symposium on Media Responses to Emerging Illness. Ruth Katz’s presentation demonstrated the complexity of the legislative branch of government and the politics involved in putting forth a public health agenda. Although I am now much more cynical about legislating health through policy change, I am also more keenly aware of the role that politics plays in setting the public health agenda. Dr. Curran and  Phyllis Freeman also touched on this theme – pointing out that CDC favors a more "scientific” and “objective” approach over politics – often paying a price for its political naivete. Katz’ presentation highlighted the impact that lobbying groups can have on Congressional members and their staff. The role of politically savvy “communities of suffering” in influencing the public health agenda cannot be underemphasized. Of course, several factors must coincide in order for change in the public health agenda to take place. This theme was evident at the Symposium on Media. Larry Mass and Laurie Garrett’s description of covering AIDS in the early days of the epidemic showed that public health officials were not alone in facing challenges concerning emerging illness. These challenges lessened only with time as cases continued to rise, media coverage increased, and the urgency of the public health dilemma became more evident. The relationship between institutional responses and media coverage of emerging illness was an important theme repeated by many of the Sawyer seminar presenters. This theme was especially pertinent to Kevin De Cock's presentation on International Responses to HIV/AIDS. In spite of the massive international media coverage given to HIV/AIDS, foreign government’s refused to acknowledge the depth and breath of their in-country epidemics until very late in the epidemic curve. Andy Spielman’s presentation on Lyme Disease demonstrated how class influences the public health agenda. Lyme disease, an illness initially more prevalent in wealthy New England neighborhoods received unprecedented media coverage (given its relative unimportance when compared to other illnesses) and public health attention.

Although I thoroughly enjoyed the Sawyer Seminar this semester, its focus on emerging “infectious” disease limited the scope of the conclusions/lessons to be learned in reference to non-infectious or other chronic forms of illness. Two semesters ago –outstanding sessions on Turret’s syndrome and muscular sclerosis were presented. Both presenters included references to the institutional responses to these illnesses. What was missing this semester was a more critical analysis of why emerging illness is most commonly characterized as infectious. One interesting development at CDC is the current classification of Chronic Fatigue Syndrome as an emerging “infectious” illness. Why is CFS characterized as an infectious illness? Could it be non-infectious? Certainly, yet its legitimacy as an illness somehow hinges on the possibility that it has infectious disease roots. The Sawyer Seminar could have benefited from presentations/ongoing dialogue about whether/how the biomedical paradigm has hindered public health interventions with regard to chronic disease and illness. What we really needed was a more critical analysis of why infectious disease is such a “sexy” topic for biomedical researchers, public health officials, the media, and the public alike.

My dissertation research on SLE examines individual SLE sufferers, their community of suffering, and the sociocultural, political, economic, and institutional processes that shape SLE experiences. The Sawyer seminar themes over the last year on environmental hazards, community activism, and institutional responses to emerging illness have highlighted the importance of examining SLE as a biomedical research topic and as a problem of the public health. The 1999 Sawyer Seminar series provided me with the valuable opportunity to examine institutional responses to emerging illness. The most prevalent theme of the seminar concerned the magnitude of the threat to public health and urgency of the needed response. It was clear from the outset of the seminar that institutional responses to emerging illness are directly proportional to the threat to public health. Although initially the threat of AIDS outside the gay community was ignored, eventually biomedical researchers and the general public realized the potential mpact of the disease. What makes SLE an unusual emerging illness in light of this example, is the fact that it is not an infectious disease. As a result, most biomedical professionals do not consider it a threat to public health (even though 1 in every 500 women get the disease).   The Sawyer Seminar highlighted the pervasive influence of the infectious disease model on how health care professionals and the general public rationalize the potential threat of emerging illness. Emerging illness at CDC for example is typically described as the domain of EIS Officers. These "disease detectives" span the globe looking for ways to solve disease and illness mysteries. The most frequent disease mysteries solved are infectious disease outbreaks. This is not surprising given the visibility of infectious disease and the necessity for intervention to prevent transmission. The Sawyer seminar gave me the opportunity to apply the infectious disease model of emerging illness to SLE. What makes SLE an interesting example of an emerging illness is its unknown etiology coupled with its partial biomedical acceptance as an autoimmune disorder. Unlike most infectious disease entities, the etiology of SLE remains a mystery despite large biomedical research studies. Although not comparable in some ways to othr emerging illnesses, SLE represents part of the broad spectrum of illnesses with unknown etiology, diffuse signs, debilitating symptomology, difficult diagnosis, and incurability. In my dissertation research I plan to explore the limitations of the biomedical approach to characterizing and intervening with regard to non-infectious emerging illness.

Based on the themes of the Sawyer seminar, my research will also examine a number of levels of institutional responses to SLE. These responses shape research priorities in the private and public sectors of biomedical research. These research priorities have a direct impact on the lives of SLE sufferers. My research will attempt to place SLE within an historical context so that institutional responses of governmental agencies, private research foundations, managed care organizations, insurance companies and the like can be viewed as part of an historical trajectory. When placed within this context, institutional responses to SLE can be studied from the federal to the local level. In my research, I plan to focus on the institutional responses of the CDC and ASTDR, managed care organizations and insurance companies to SLE, and how these institutional responses shape biomedical priorities, the doctor-patient relationship, and the lives of women with SLE.

The theme addressed by the 1999 Sawyer Seminar, institutional responses to emerging illness, has also prompted me to take a closer look at institutional and personal definitions of SLE. Emerging illness research could benefit a great deal from the collective experience of women with SLE, since even though SLE has been adopted by biomedical science as an auto-immune disorder, it continues to be embroiled in arguments over institutional, clinical and popular definitions of what it "really" is. Defining what SLE "really" is continues to be contested by biomedical practitioners and individual SLE sufferers. Like other emerging illnesses, SLE is unpredictable precisely because its etiology is unknown. While its etiology is unknown, definitions of SLE vary greatly. A close examination of the history of SLE, what lead to its biomedical legitimation as an autoimmune disorder, and what this means, could familiarize other emerging illness communities with the costs and benefits of biomedical legitimation.
 
 
 

Report of Marcia Owens,
Sawyer Seminar  Doctoral Fellow
1998-1999 Academic Year

The Fall 1998 Mellon/Sawyer Seminar Series, “Environmental Hazards, Activism, and the Public Health,” provided me with fresh perspective on issues to which I have devoted my professional career.  As an environmental attorney both on the federal and state levels, I have dealt with the issues of environmental hazards, activism, and public health separately, but also from the perspective of my government clients.   My interest in the relationships of the social, cultural, economic and political factors as they relate to environmental health has remained the inspiration of my academic career.

Dr. Michelle Murphy’s seminar, “Women (Re) Organizing the Office: Feminism, Occupational Health and Hazards of the Built Environment,” definitely provided a fresh viewpoint for me.  Having worked in a “sick building”, I understood the concept first hand.  However, the history of sick building syndrome and the role of women workers in increasing awareness was new to me.  Similarly, Dr. Allard Dembe’s seminar, “Barriers to the Recognition and Treatment of Occupational Disorders,” provided a historical frame and new insight.

Ms. Connie Tucker’s talk, “Environmental Justice: Health, Social and Economic Justice,” was a visit to the familiar. In my experiences as an environmental attorney, I witnessed an increase of grassroots environmental justice activists, and know the importance and power of their pursuits.

“Environmental Destruction and the Movement for the Survival of the Ogoni People,” the presentation by Dr. Owen Wiwa, was the seminar which impacted me most.  The struggles of the Ogoni against their own government and a world oil power, are illustrative of the strain on the relationships of the social, cultural, economic and political factors in environmental justice.  The detailing of the  Ogoni conflicts also expanded the international view of environmental justice issues.

The Spring Semester Series, “Emerging Illnesses and Institutional Responses,” provided a historical and political perspective from individuals who were personally involved in the emergence of particular illnesses.  The outlook from political insiders was fascinating and informative. Dean Jim Curran’s account of his early involvement with AIDS was a reminder of the fragile balance of politics and public health.  Similarly, the “Symposium on Media Responses to Emerging Illnesses” added the perspective of yet another important institutional player to the exposure, or lack thereof, of illnesses and other issues.

My personal research has progressed significantly in the last year.  My proposed dissertation, “The Environmental Literacy of Urban Middle School Teachers,” was accepted this spring.  The study will assess the environmental literacy of 292 urban middle school teachers using the Wisconsin Environmental Literacy Survey.  The study will examine four dimensions of the participants’ environmental literacy: a) attitudes toward the environment, b) beliefs about their own power and responsibility to affect environmental change, c) personal behaviors and actions toward the environment, and d) levels of knowledge regarding ecology and environmental issues.

My interest in environmental literacy is born of my legal and professional experiences, and my interactions with communities who were interested, but not knowledgeable enough to effectively address environmental issues from the political and scientific viewpoints.  My selection of teachers as a study population is rooted in my belief that environmental literacy begins early, and that we must empower the next generation of politicians, scientists, activists, and citizens to make informed environmental policy decisions.  The role of teachers in this empowerment is crucial, for teachers only teach what they know themselves.  My assessment of teachers in an urban community studies a previously overlooked group, and will contribute to the baseline knowledge of the levels of environmental literacy.  In addition, the study  should provide insight on directions in teacher training and curriculum development aimed at producing an environmentally literate citizenry.  I expect to defend my dissertation in Fall, 1999.