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Arch : Northwestern University Institutional Repository NORTHWESTERN UNIVERSITY Classification and the Social Construction of Disease in Medical Systems: A Historical Comparison of Syphilis and HIV/AIDS in the United States A DISSERTATION SUBMITTED TO THE GRADUATE SCHOOL IN PARTIAL FULFILLMENT OF THE REQUIREMENTS for the degree DOCTOR OF PHILOSOPHY Field of Sociology By Rebecca J. Culyba EVANSTON, ILLINOIS December 2008 2 © Copyright by Rebecca J. Culyba 2008 All Rights Reserved 3 ABSTRACT Classification and the Social Construction of Disease in Medical Systems: A Historical Comparison of Syphilis and HIV/AIDS in the United States Rebecca J. Culyba Classifying patients to diagnose and treat disease, ensure access to medical care, adhere to standards of quality, contain costs, and fulfill contractual obligations is critical to the delivery of healthcare. While classification is a fundamental standardizing process in healthcare, as a social process it is the product of negotiations, organizational processes, and moral conflict often hidden in bureaucratic and professional modus operandi. By comparing the early twentieth century case of syphilis to the contemporary case of HIV/AIDS, the dissertation shows how symptomological, etiological, and financial classification have been developed and deployed in the context of a transforming twentieth century American medical system; how those deployments have been sustained, modified, and/or undermined over time; and, ultimately, how classifications influence the social construction of disease through the creation of social problems and their solutions. The layering of classifications over time can facilitate the unintended and obscured persistence of categories and criteria, impacting the day-to-day practice of sorting patients, treatments, and experts. The aim of the dissertation is to study the social process of classification in its everyday operation in the interplay between discourse and practice to understand what healthcare providers actually do with the classifications they are handed, including the adaptation of classifications to local situations that, ultimately shape the way syphilis and HIV/AIDS are integrated into medical practice itself. As a result of looking at classification this way, I show how symptoms, diseases, patients, treatments, and medical care providers are dynamic objects of classification that contribute to collective definitions of disease and influence how medicine and public health organize activity in changing technological, administrative, and moral contexts. 4 ACKNOWLEDGMENTS Interview and ethnographic data for this dissertation was collected as part of the project “Clinic- Level Law: The Legalization of Medicine in AIDS Research and Treatment” (Carol Heimer, Principal Investigator; JuLeigh Petty, research assistant; J. Lynn Gazley, research assistant) with support from the American Bar Foundation, the Russell Sage Foundation, and the National Science Foundation (NSF SES-0319560). Special thanks go study participants who gave generously of their time making the collection of data possible and effective. A Graduate Research Grant from Northwestern University financed the collection of archival materials from the University of Pittsburgh, Archive Center and the National Administration of Records and Archives Southeast Region. The American Association of University Women supported a year of full-time writing with a Dissertation Fellowship. Thank you to Wendy Espeland and Arthur Stinchcombe for serving on my committee and providing valuable feedback. I could not have asked for a better advisor and dissertation committee chair than my friend Carol Heimer who I had the pleasure of working with for several years. Thank you to JuLeigh Petty for reading earlier drafts and scholarly collaboration on “From Dirty Work to Skilled Expertise: The Professionalization of HIV/AIDS Care in the U.S.” presented in 2007 at the American Sociological Association annual meeting. Special thanks goes to the Southeast AIDS Training and Education Center (SEATEC) and Fulton County Government’s Ryan White Part A Program, particularly Laura Donnelly, Ira Schwartz, Felicia Guest, Jeff Cheek, and Kathy Whyte. Thank you to Victoria Grochocinksi who kindly volunteered to copy-edit this dissertation in its final stages. My friend Amy Ware was a faithful comrade in armes. Thank you to my brothers, Michael and Matthew Culyba, and my parents, Michael and Joyce Culyba, for their encouragement, especially to my mom who provided countless hours of thoughtful support. Most of all, thank you to Cody, Lily, and Mark Clifton for their unending love and patience. I am especially grateful to my husband Mark, who always brings me down to earth when I need it and holds faith in me that humbles and inspires me. 5 LIST OF ABBREVIATIONS ACT UP AIDS Coalition to Unleash Power ADAP AIDS Drug Assistance Program AIDS Acquired Immune Deficiency Syndrome AMA American Medical Association AZT Azidothymidine, more commonly known as Zidovudine, also abbreviated ZDV CARE Act Ryan White Comprehensive AIDS Resources Emergency (CARE) Act CCG Clinical Cooperative Group CCMC Committee on the Cost of Medical Care CDC Centers for Disease Control and Prevention CMS Centers for Medicare and Medicaid Services CPT Current Procedural Terminology CRS Committee on Research in Syphilis DHHS Department of Health and Human Services DRG Diagnostic Related Group ELISA Enzyme-Linked Immunosorbent Assay FDA Food and Drug Administration GRID Gay-Related Immunodeficiency Disease HAART Highly Active Antiretroviral Therapy HIPAA Health Information Portability and Accountability Act HIV Human Immunodeficiency Virus IAS-USA International AIDS Society USA ICD-9-CM International Classification of Disease, Ninth Revision, Clinical Modification IND Investigational New Drug IOM Institute of Medicine KS Kaposi’s sarcoma KSOI Kaposi’s sarcoma and Opportunistic Infections MMWR Morbidity and Mortality Weekly Report MSM Men who have sex with men NCI National Cancer Institute NIH National Institutes of Health PAP Patient Assistance Program PCP Pneumocystis carinii pneumonia PI Protease Inhibitor RCT Randomized controlled trial RWJF Robert Wood Johnson Foundation STD Sexually Transmitted Disease USPHS United States Public Health Service VD Venereal Disease WHO World Health Organization 6 TABLE OF CONTENTS ABSTRACT……………………………………………………………………………………....3 ACKNOWLEDGMENTS………………………………………………………………………..4 ABBREVIATIONS……………………………………………………………………………....5 TABLE OF CONTENTS………………………………………………………………………...6 LIST OF TABLES…………………………………………………………………………….....7 LIST OF FIGURES…………………………………………………………………………........8 CHAPTER 1 INTRODUCTION………………………………………………………………..9 CHAPTER 2 THE SYMPTOMS ARE WHAT? FROM CLINICAL DESCRIPTIONS TO CASE DEFINITIONS…………………………………………………………..55 CHAPTER 3 THE CAUSE IS (IN) WHO? FROM MASS SCREENINGS TO ROUTINE TESTING……………………………………………………………………….78 CHAPTER 4 THE CLASSIFICATION OF PATIENTS: CASE PROCESSING AND RESOURCE ALLOCATION………………………………………………....122 CHAPTER 5 THE CLASSIFICATION OF TREATMENT: UNCERTAINTY AND THE STANDARDIZATION OF CARE…………………………………………....155 CHAPTER 6 THE CLASSIFICATION OF EXPERTISE: MEDICALIZATION AND PROFESSIONAL AUTHORITY………………………………………..…....214 CHAPTER 7 CONCLUSION………………………………………………………………..258 REFERENCES………………………………………………………………………………...273 APPENDIX……………………………………………………………………………………309 VITA…………………………………………………………………………………………..324 7 LIST OF TABLES Table 1.1 Overview of Syphilis and HIV/AIDS Cases Table 1.2 Typology of Classification Table 1.3 Classifications of Syphilis and HIV/AIDS Table 2.1 Historical Classifications of Syphilis Table 2.2 Definitions of AIDS and HIV Infection, 1981-2006 Table 4.1 Summary Timeline of Regulations and Protocols Impacting Financial Classification of HIV Patients, 1918-2006 Table 5.1 HIV/AIDS Treatment Guidelines, Authors, Years, and Frequency of Updates Table 5.2 Code Sets Adopted for Use by HIPAA Table 6.1 Subspecialty Certificates Issued in Infectious Disease, 1995-2004 Table 6.2 Definitions of HIV Expertise, 1999-2004 Table A.1 Timeline of Selected Federal HIV/AIDS Surveillance and Testing Recommendations, Approved Treatment and Diagnostic Technology, Funding Policy and Recommendations 8 LIST OF FIGURES Figure 1.1 Linear Model of Classification Figure 1.2 Interactive Model of Classification Figure 3.1 AIDS Cases, Deaths, and Persons Living with AIDS, 1985-2005 Figure 4.1 Selected Ryan White Program Funding, 1991-2006 Figure 4.2 Federal Spending on HIV/AIDS Care by Program, Fiscal Year 2006 Figure 7.1 Convergence of Disease through Overlapping of Classification Figure A.1 CDC’s Adult HIV/AIDS Confidential Case Report Figure A.2 Intake Form Figure A.3 Encounter Form Figure A.4 Billing Form (Procedures) Figure A.5 Billing Form (Diagnoses) 9 CHAPTER 1 INTRODUCTION On June 5, 1981, public glimpses of the condition we now know as HIV/AIDS first appeared on the second page of the MMWR. The report, “Pnuemocystis Pneumonia – Los Angeles,” described the first cases of a rare pneumonia that appeared in five young, homosexual men. Since pneumocystis carinii pneumonia (PCP) was an existing, albeit uncommon, medical condition, diagnosis was confirmed with a lung biopsy. Each man also had a confirmed case of current or previous infection from cytomegalovirus and candidal mucosal infections (CDC 1981c). Initial investigations into the distribution of pentamidine prompted this report. The CDC has been responsible for distributing rare drugs and vaccines since 1966. In 1981, it was the only source of pentamidine in the country. Soon after, a CDC-led outbreak investigation
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