The Kaposi's Sarcoma Clinic at the University of California, San Francisco: An Early Response to the AIDS Epidemic

Bulletin of the History of Medicine

Volumn 71, Issue 4, 1997, Pages 651-688

  Hughes, Sally Smith ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ACQUIRED IMMUNE DEFICIENCY SYNDROME; ARTICLE; EPIDEMIC; HISTORY; HUMAN; KAPOSI SARCOMA; OUTPATIENT DEPARTMENT; UNITED STATES;

ACQUIRED IMMUNODEFICIENCY SYNDROME; DISEASE OUTBREAKS; HISTORY, 20TH CENTURY; HUMANS; OUTPATIENT CLINICS, HOSPITAL; SAN FRANCISCO; SARCOMA, KAPOSI;

EID: 0031307721     PISSN: 00075140     EISSN: None     Source Type: Journal    
DOI: 10.1353/bhm.1997.0179     Document Type: Article

References (196)

1. Marcus A. Conant, "Testimony before Congressional Committee on Health" (draft), Congressman Henry A. Waxman, chairman, [Subcommittee on Health and the Environment, Committee on Energy and Commerce, U.S. House of Representatives], 13 April 1982; Conant's Kaposi's Sarcoma Notebook, 1981-2/1982, Conant's dermatology practice office, San Francisco, Calif. (hereafter, KSN). Conant's "notebooks," beginning in 1981, are an ongoing series of dated binders containing a chronological arrangement of documents related to the epidemic.
2. There is a wealth of historical research on the "perception," "construction," and "framing" of disease. See, for example, Terence Ranger and Paul Slack, eds., Epidemics and Ideas: Essays on the Historical Perception of Pestilence (Cambridge: Cambridge University Press, 1995); Charles E. Rosenberg, Explaining Epidemics and Other Studies in the History of Medicine (Cambridge: Cambridge University Press, 1992); Susan Sontag, Illness as Metaphor (New York: Farrar, Straus, and Giroux, 1978).
3. There is a wealth of historical research on the "perception," "construction," and "framing" of disease. See, for example, Terence Ranger and Paul Slack, eds., Epidemics and Ideas: Essays on the Historical Perception of Pestilence (Cambridge: Cambridge University Press, 1995); Charles E. Rosenberg, Explaining Epidemics and Other Studies in the History of Medicine (Cambridge: Cambridge University Press, 1992); Susan Sontag, Illness as Metaphor (New York: Farrar, Straus, and Giroux, 1978).
4. There is a wealth of historical research on the "perception," "construction," and "framing" of disease. See, for example, Terence Ranger and Paul Slack, eds., Epidemics and Ideas: Essays on the Historical Perception of Pestilence (Cambridge: Cambridge University Press, 1995); Charles E. Rosenberg, Explaining Epidemics and Other Studies in the History of Medicine (Cambridge: Cambridge University Press, 1992); Susan Sontag, Illness as Metaphor (New York: Farrar, Straus, and Giroux, 1978).
5. Oral history and archival projects on the San Francisco AIDS epidemic are in progress, sponsored by the Bancroft Library, University of California at Berkeley; the University of California, San Francisco, Library and Center for Knowledge Management; and the Department of the History of Health Sciences, UCSF. Begun in 1992, the oral history component, "The San Francisco Bay Area AIDS Oral History Project: The Medical Response, 1981-1984," consists of interviews by the author with physicians, scientists, epidemiologists, AIDS nurses, and community physicians with AIDS practices. As they are completed, edited and indexed volumes of the oral histories are deposited at the Bancroft and UCSF libraries. The AIDS History Project, Archives and Special Collections, UCSF Library, surveys, collects, and processes documents on the San Francisco AIDS epidemic. All oral history references in this article are to the UCB/UCSF project.
6. This paper treats the initial medical response to the epidemic in San Francisco -specifically, how and why and to what effect a university clinic was organized. I acknowledge, but will not examine, the importance of other responses, such as those of government, patients, the gay community, the media, and the general public. For a penetrating analysis of the role of such constituencies in the production of knowledge about AIDS, see: Steven Epstein, Impure Science: AIDS, Activism, and the Politics of Knowledge (Berkeley and Los Angeles: University of California Press, 1996).
7. For a general historical account of the epidemic, see Mirko D. Grmek, History of AIDS: Emergence and Origin of a Modern Pandemic, trans. Russell C. Maulitz and Jacalyn Duffin (Princeton: Princeton University Press, 1990). Two volumes edited by Fee and Fox address the epidemic from a broad perspective but largely ignore the West Coast: Elizabeth Fee and Daniel M. Fox, eds., AIDS: The Burdens of History (Berkeley: University of California Press, 1988); and idem, AIDS: The Making of a Chronic Disease (Berkeley: University of California Press, 1992).
8. For a general historical account of the epidemic, see Mirko D. Grmek, History of AIDS: Emergence and Origin of a Modern Pandemic, trans. Russell C. Maulitz and Jacalyn Duffin (Princeton: Princeton University Press, 1990). Two volumes edited by Fee and Fox address the epidemic from a broad perspective but largely ignore the West Coast: Elizabeth Fee and Daniel M. Fox, eds., AIDS: The Burdens of History (Berkeley: University of California Press, 1988); and idem, AIDS: The Making of a Chronic Disease (Berkeley: University of California Press, 1992).
9. For a general historical account of the epidemic, see Mirko D. Grmek, History of AIDS: Emergence and Origin of a Modern Pandemic, trans. Russell C. Maulitz and Jacalyn Duffin (Princeton: Princeton University Press, 1990). Two volumes edited by Fee and Fox address the epidemic from a broad perspective but largely ignore the West Coast: Elizabeth Fee and Daniel M. Fox, eds., AIDS: The Burdens of History (Berkeley: University of California Press, 1988); and idem, AIDS: The Making of a Chronic Disease (Berkeley: University of California Press, 1992).
10. Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: Penguin Books, 1987); Carol Pogash, As Real As It Gets: The Life of a Hospital at the Center of the AIDS Epidemic (New York: Carol Publishing Group, 1992). Shilts's account, as the subtitle implies, is an interweaving of personal stories and political events, in the United States and abroad. Pogash's focus is on the "individual human stories" (dust jacket) of people associated with San Francisco General Hospital, which in 1983, two years after creation of the KS Clinic, opened an AIDS clinic and inpatient ward.
11. Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: Penguin Books, 1987); Carol Pogash, As Real As It Gets: The Life of a Hospital at the Center of the AIDS Epidemic (New York: Carol Publishing Group, 1992). Shilts's account, as the subtitle implies, is an interweaving of personal stories and political events, in the United States and abroad. Pogash's focus is on the "individual human stories" (dust jacket) of people associated with San Francisco General Hospital, which in 1983, two years after creation of the KS Clinic, opened an AIDS clinic and inpatient ward.
12. And the Band Played On is written in the form of a journal, with dated chronological entries. While effective as a narrative, this structure makes it difficult for the reader to obtain a unified picture of the medical response, nor is it Shilts's intent to provide one, let alone to analyze it.
13. CDC, "Kaposi's Sarcoma and Pneumocystis Pneumonia among Homosexual Men," Morbidity and Mortality Weekly Report (hereafter, MMWR), 1981, 30: 305-7 (3 July), quotation on pp. 305-6.
14. Heretofore, KS had occurred only rarely in the United States, and then mainly in elderly Jewish or Mediterranean men and patients receiving immunosuppressive therapy.
15. CDC, "Pneumocystis Pneumonia - Los Angeles," MMWR, 1981, 30: 250-52, quotation on p. 250.
16. CDC, "Kaposi's Sarcoma" (n. 8), p. 306.
17. Circulation of the MMWR dropped to 50,000 in 1982 when the CDC began charging a subscription fee: "Federal Report on Mortality Kept Alive," San Francisco Chronicle, 9 January 1984, p. 7. According to James Kinsella, only the Associated Press wire service, the Los Angeles Times, and the San Francisco Chronicle ran stories after the release of the first MMWR on PCP; the second MMWR on PCP and KS elicited a slightly greater response, this time from National Public Radio, the Cable News Network, and the New York Times, as well as from the Associated Press: James Kinsella, Covering the Plague: AIDS and the American Media (New Brunswick, N.J.: Rutgers University Press, 1989), pp. 9, 10, 15.
18. Circulation of the MMWR dropped to 50,000 in 1982 when the CDC began charging a subscription fee: "Federal Report on Mortality Kept Alive," San Francisco Chronicle, 9 January 1984, p. 7. According to James Kinsella, only the Associated Press wire service, the Los Angeles Times, and the San Francisco Chronicle ran stories after the release of the first MMWR on PCP; the second MMWR on PCP and KS elicited a slightly greater response, this time from National Public Radio, the Cable News Network, and the New York Times, as well as from the Associated Press: James Kinsella, Covering the Plague: AIDS and the American Media (New Brunswick, N.J.: Rutgers University Press, 1989), pp. 9, 10, 15.
19. "Report of the Centers for Disease Control Task Force on Kaposi's Sarcoma and Opportunistic Infections. Special Report: Epidemiologic Aspects of the Current Outbreak of Kaposi's Sarcoma and Opportunistic Infections," N. Engl. J. Med., 1982, 306: 248-52. For a history of the CDC, including a chapter on their response to AIDS, see Elizabeth W. Etheridge, Sentinel for Health: A History of the Centers for Disease Control (Berkeley: University of California Press, 1992). For an account of the role of epidemiologists, particularly those at the CDC, in the AIDS epidemic, see Gerald M. Oppenheimer, "In the Eye of the Storm: The Epidemiological Construction of AIDS," in Fee and Fox, eds., AIDS: The Burdens of History (n. 5), pp. 267-300.
20. "Report of the Centers for Disease Control Task Force on Kaposi's Sarcoma and Opportunistic Infections. Special Report: Epidemiologic Aspects of the Current Outbreak of Kaposi's Sarcoma and Opportunistic Infections," N. Engl. J. Med., 1982, 306: 248-52. For a history of the CDC, including a chapter on their response to AIDS, see Elizabeth W. Etheridge, Sentinel for Health: A History of the Centers for Disease Control (Berkeley: University of California Press, 1992). For an account of the role of epidemiologists, particularly those at the CDC, in the AIDS epidemic, see Gerald M. Oppenheimer, "In the Eye of the Storm: The Epidemiological Construction of AIDS," in Fee and Fox, eds., AIDS: The Burdens of History (n. 5), pp. 267-300.
21. "Report of the Centers for Disease Control Task Force on Kaposi's Sarcoma and Opportunistic Infections. Special Report: Epidemiologic Aspects of the Current Outbreak of Kaposi's Sarcoma and Opportunistic Infections," N. Engl. J. Med., 1982, 306: 248-52. For a history of the CDC, including a chapter on their response to AIDS, see Elizabeth W. Etheridge, Sentinel for Health: A History of the Centers for Disease Control (Berkeley: University of California Press, 1992). For an account of the role of epidemiologists, particularly those at the CDC, in the AIDS epidemic, see Gerald M. Oppenheimer, "In the Eye of the Storm: The Epidemiological Construction of AIDS," in Fee and Fox, eds., AIDS: The Burdens of History (n. 5), pp. 267-300.
22. Shilts, And the Band Played On (n. 6), p. 71.
23. "Report of the Centers for Disease Control" (n. 13), p. 249.
24. James W. Curran, editorial, "AIDS - Two Years Later," N. Engl. J. Med., 1983, 309 (10): 609-11 (8 September).
25. For a discussion of classification as a means for control over a previously disorganized complex of signs and symptoms, see Stephen J. Kunitz, "Classifications in Medicine," in Grand Rounds: One Hundred Years of Internal Medicine, ed. Russell C. Maulitz and Diana E. Long (Philadelphia: University of Pennsylvania Press, 1988), pp. 279-96.
26. CDC, "Update on Acquired Immune Deficiency Syndrome (AIDS) - United States," MMWR, 1982, 31: 507-14 (24 September), quotation on p. 508. A footnote (p. 508) described opportunistic infections as including pneumonia, meningitis, or encephalitis due to one or more of a number of fungal, parasitic, bacterial, and viral infections or agents, which were listed by name.
27. A. G. Fettner and W. A. Check, The Truth about AIDS: Evolution of an Epidemic (New York: Holt, Rinehart and Winston, 1984), pp. 64-66.
28. A physician prescribing pentamidine had to file a request with the CDC, the sole source of the drug. A survey of these records revealed an increase in requests, beginning in the last six months of 1980, for cases that appeared to be similar to those reported with the new form of PCP: Shilts, And the Band Played On (n. 6), pp. 80-81.
29. Conant oral history (n. 3), draft, p. 97.
30. Conant is mistaken about this date. An undated typescript entitled "Chronology of Marcus Conant's AIDS Involvement," compiled under his direction by his office staff, lists "Call from Alvin Friedman-Kien of N.Y. regarding Kaposi's sarcoma in gays" as occurring on 21 April 1981. The next entry, "Conant speaks at UCSF conference to dermatologists and asks about Kaposi's sarcoma," is dated 22 April 1981. Shilts describes the telephone call as occurring on 22 April and the conference on 23 April. Chronology courtesy of Marcus Conant; Shilts, And the Band Played On (n. 6), p. 64.
31. Scientists have recently found evidence of the association of a new herpes virus with KS: "Unknown Virus Linked to Cancer in AIDS Patients," Wall Street Journal, 16 December 1994, p. B8.
32. See n. 22.
33. Conant oral history (n. 3), draft, pp. 8-10. James R. Groundwater is a dermatologist in private practice in San Francisco. His account of the event differs slightly from both Conant's and Shilts's. Groundwater states that he went up to Conant after his talk and initiated discussion of Groundwater's patient, Ken Horne. Horne had been referred to Groundwater in November 1980, complaining of fatigue, nausea, and "purple spots" on his chest. Fearing that the "spots" were malignant, Groundwater sent biopsy material from the lesions and from Horne's swollen lymph nodes to several pathologists for diagnosis. The diagnoses were inconclusive. In April 1981 the UCSF pathologist, Richard Sagebiel, confirmed KS - a diagnosis that Groundwater reported to Horne at an office appointment on 9 April: Groundwater interview (n. 3), not transcribed, 24 July 1996. See also Shilts, And the Band Played On (n. 6), pp. 46, 60, 64-65.
34. Conant oral history (n. 3), draft, pp. 8-10. James R. Groundwater is a dermatologist in private practice in San Francisco. His account of the event differs slightly from both Conant's and Shilts's. Groundwater states that he went up to Conant after his talk and initiated discussion of Groundwater's patient, Ken Horne. Horne had been referred to Groundwater in November 1980, complaining of fatigue, nausea, and "purple spots" on his chest. Fearing that the "spots" were malignant, Groundwater sent biopsy material from the lesions and from Horne's swollen lymph nodes to several pathologists for diagnosis. The diagnoses were inconclusive. In April 1981 the UCSF pathologist, Richard Sagebiel, confirmed KS - a diagnosis that Groundwater reported to Horne at an office appointment on 9 April: Groundwater interview (n. 3), not transcribed, 24 July 1996. See also Shilts, And the Band Played On (n. 6), pp. 46, 60, 64-65.
35. "Onslaught" is Shilts's term: And the Band Played On (n. 6), p. 71.
36. Conant, "Testimony before Congressional Committee on Health" (n. 1), p. 2.
37. Marcus A. Conant to David F. Altman et al., 2 July 1981, KSN, binder 1981-2/1982.
38. Conant to William Epstein, 23 July 1981, ibid.
39. Conant to Harold Jaffe, 23 July 1981, ibid.
40. After roughly thirty interviews had been completed with patients in New York, Los Angeles, and San Francisco, the CDC tabulated the results and concluded that the group's distinguishing characteristic was lifestyle: Conant to David F. Altman et al., 4 August 1981, ibid.; Etheridge, Sentinel for Health (n. 13), p. 324. For a discussion of the role of the "lifestyle" model in defining AIDS, see Oppenheimer, "Eye of the Storm" (n. 13).
41. After roughly thirty interviews had been completed with patients in New York, Los Angeles, and San Francisco, the CDC tabulated the results and concluded that the group's distinguishing characteristic was lifestyle: Conant to David F. Altman et al., 4 August 1981, ibid.; Etheridge, Sentinel for Health (n. 13), p. 324. For a discussion of the role of the "lifestyle" model in defining AIDS, see Oppenheimer, "Eye of the Storm" (n. 13).
42. Conant oral history (n. 3), draft, p. 103.
43. "University of California, San Francisco, Ambulatory Care Center, Clinical Nurse Job Description," 9 July 1981, author's collection, courtesy of Helen Schietinger.
44. Conant to Charles Morris, 30 July 1981; Randy Shilts to Conant, 28 August 1981; Conant to Corrina Kaarlela, 1 October 1981, KSN, binder 1981-2/1982.
45. For information about early educational campaigns, see Marcus Conant and Angie Lewis oral histories (n. 3), and Kaposi's Sarcoma Research and Education Foundation documents in the AIDS History Project Archives, Special Collections, UCSF Library, San Francisco, Calif. (hereafter, AHPA).
46. Conant to Jerry Gillam and Dennis Kroteau, 9 October 1981, KSN, binder 1981-2/ 1982. These fund-raising efforts were formalized in May 1982 when Conant and two others formed the Kaposi's Research and Education Foundation, the predecessor of the San Francisco AIDS Foundation. For details, see Conant's oral history (n. 3) and the records of the foundation in AHPA.
47. Volberding oral history (n. 3), draft, pp. 15-16.
48. Ibid., pp. 16-17. Volberding reports seeing his first patient with KS on 1 July 1981; the first MMWR about KS is dated 3 July. His postdoctoral fellow remembered seeing similar cases at Roosevelt Hospital in New York City, where he had just completed his internship and residency: "We called his friends at Roosevelt Hospital . . . and traded notes back and forth" (ibid., p. 17).
49. Ibid., pp. 16-17. Volberding reports seeing his first patient with KS on 1 July 1981; the first MMWR about KS is dated 3 July. His postdoctoral fellow remembered seeing similar cases at Roosevelt Hospital in New York City, where he had just completed his internship and residency: "We called his friends at Roosevelt Hospital . . . and traded notes back and forth" (ibid., p. 17).
50. When queried about the reasons for his conclusion about the malignancy's importance, Volberding answered: "Well, because it was in gay men, and San Francisco has more gay men than most places" (ibid., p. 20).
51. Conant to Dr. William Epstein et al., 2 September 1981, KSN, binder 1981-2/1982.
52. Ibid.
53. See, for example, Conant oral history (n. 3), draft, pp. 108-9; John S. Greenspan oral history (n. 3), draft, p. 81.
54. See, for example, Conant oral history (n. 3), draft, pp. 108-9; John S. Greenspan oral history (n. 3), draft, p. 81.
55. Conant to David Altman et al., 4 August 1981, KSN, binder 1981-2/1982.
56. John L. Ziegler to Frank J. Rauscher, Jr., 23 September 1981, ibid. CDC statistics included KS Clinic cases; Selma Dritz of the San Francisco Department of Public Health regularly reported cases of KS, PCP, and opportunistic infections in San Francisco to the CDC task force: D. Peter Drotman to Helen Schietinger, 1 July 1982, KSN, binder 3-12/ 1982.
57. Daniel M. Fox, "AIDS and the American Health Polity: The History and Prospects of a Crisis of Authority," in Fee and Fox, eds., AIDS: The Burdens of History (n. 5), pp. 316-43.
58. Angie Lewis oral history (n. 3), draft, p. 172.
59. The need for comparative studies has already been stated.
60. See, for instance, the articles by Lawrence Mass in the 13-26 July, 27 July-9 August, and 8-24 August 1981 editions of New York Native, a gay-oriented newspaper; F. Lozada et al., "The Kaposi's Sarcoma Puzzle: New Outbreak of Oral Tumors, Malignancies and Infectious Diseases Strikes Young Male Homosexuals," CDA Journal March 1982, pp. 39-42; and "AID [sic]: Acquired Immune Deficiency," G.M.H.C. (Gay Men's Health Crisis) Newsletter, New York, #1, July 1982, author's collection, courtesy of Helen Schietinger.
61. See, for instance, the articles by Lawrence Mass in the 13-26 July, 27 July-9 August, and 8-24 August 1981 editions of New York Native, a gay-oriented newspaper; F. Lozada et al., "The Kaposi's Sarcoma Puzzle: New Outbreak of Oral Tumors, Malignancies and Infectious Diseases Strikes Young Male Homosexuals," CDA Journal March 1982, pp. 39-42; and "AID [sic]: Acquired Immune Deficiency," G.M.H.C. (Gay Men's Health Crisis) Newsletter, New York, #1, July 1982, author's collection, courtesy of Helen Schietinger.
62. See, for instance, the articles by Lawrence Mass in the 13-26 July, 27 July-9 August, and 8-24 August 1981 editions of New York Native, a gay-oriented newspaper; F. Lozada et al., "The Kaposi's Sarcoma Puzzle: New Outbreak of Oral Tumors, Malignancies and Infectious Diseases Strikes Young Male Homosexuals," CDA Journal March 1982, pp. 39-42; and "AID [sic]: Acquired Immune Deficiency," G.M.H.C. (Gay Men's Health Crisis) Newsletter, New York, #1, July 1982, author's collection, courtesy of Helen Schietinger.
63. Conant's KS notebooks contain most, if not all, of the memos he sent to interested colleagues telling of the date, topic, and speaker at meetings of the KS Study Group.
64. Oppenheimer pointed out that papers published in 1981 on the new syndrome were mainly case and surveillance reports: "Eye of the Storm" (n. 13), p. 274.
65. I am grateful to Russell Maulitz for suggesting this dichotomy.
66. The MMWR reported 7 cases of KS and PCP, 47 cases of KS only, and 53 cases of PCP only, for a total of 107 cases: CDC, "Follow-up on Kaposi's Sarcoma and Pneumocystis Pneumonia," MMWR, 1981, 30: 409-10 (28 August).
67. David Altman, the gastroenterologist, was one of the five men whom Conant invited to the Faculty Club to discuss the formation of a multidisciplinary clinic. Conant's memo of invitation states the topic of discussion as "Gay bowel syndrome with Kaposi's sarcoma": Conant to David F. Altman et al., 2 July 1981, KSN, binder 1981-2/1982.
68. Conant to Bud Silverman, M.D.[sic], and Francina Lozada, M.D.[sic], 11 November 1981, ibid. Silverman and Lozada are faculty members at the UCSF School of Dentistry.
69. Conant oral history (n. 3), draft, p. 103. Beyond the scope of this paper, but an area of fruitful inquiry, would be a comparison of the clinical approach and the multifactorial approach of epidemiologists. I thank Victoria Harden for this suggestion.
70. Volberding oral history (n. 3), draft, p. 133.
71. Michael S. Gottlieb, an infectious disease specialist at UCLA, was first author of the first CDC report on PCP in homosexual men. This report is now recognized as the first publication on AIDS: CDC, "Pneumocystis Pneumonia - Los Angeles" (n. 10).
72. Conant oral history (n. 3), draft, p. 112.
73. Until January 1983, when an official "AIDS" Clinic opened at SFGH, Volberding saw KS and later "AIDS" patients in his oncology clinic.
74. I thank an anonymous reviewer for making this point.
75. For discussion of the financial constraints under which the KS Clinic operated, see Schietinger oral history (n. 3), draft, pp. 13-15, 55.
76. The circumstances surrounding the creation of AIDS-related units at SFGH and UCSF fall outside the scope of this paper. For histories of the clinic and inpatient unit at SFGH, see "History of the AIDS Outpatient Clinic, Ward 86," [n.d.], folder "Ward 86"; "San Francisco General AIDS Inpatient Unit Background," [n.d.], folder "Ward 5A," carton 4, AIDS Resources Center Archives, Ward 5A, San Francisco General Hospital, UCSF Library, Special Collections.
77. Conant to Jeffrey Golden, 17 January 1983, KSN, binder 1-5/1983.
78. [Untitled, undated report, 12/84 or 1/85], folder "AIDS Tissue Committee," carton 2, John S. Greenspan papers, UCSF School of Dentistry, 92-0123, San Francisco, Calif. Critics claim that the clinic's name was chosen to avoid the term "AIDS": Conant oral history (n. 3), draft, p. 186.
79. Conant to Harold Jaffe, 23 July 1981.
80. Robert K. Bolan to Conant, 7 October 1981; Conant to Alvin Friedman-Kien, 30 November 1981, ibid.
81. A "workshop" on Kaposi's sarcoma, sponsored by the CDC and the National Cancer Institute, was held on the NIH campus in Bethesda, Md., on 15 September 1981: William D. DeWys to Conant, 4 September 1981, ibid.
82. Conant oral history (n. 3), draft, pp. 105-6.
83. Indicative of this more inclusive focus are both the title and content of a workshop sponsored by UCSF Nursing Services in June 1982; called "Kaposi's Sarcoma and Pneumocystis Pneumonia: New Phenomena among Gay Men," it included a morning panel and case presentation on KS, and an identical format in the afternoon for PCP: brochure, "Kaposi's Sarcoma and Pneumocystis Pneumonia: New Phenomena among Gay Men," 26 June 1982, UCSF, author's collection, courtesy of Angie Lewis.
84. Comparative studies of differences in the "construction" of the epidemic in cities here and abroad are needed in order to determine which aspects of the syndrome were most salient, to whom, and why. One such comparative study is that in progress by Ronald Bayer and Gerald Oppenheiumer, who have interviewed physicians with AIDS practices in various cities in the United States.
85. For more on Campbell's role in the epidemic, see the oral history (n. 3) with Angie Lewis.
86. See Epstein, Impure Science (n. 4) for a discussion of AIDS activism as an alternative basis of expertise.
87. Slack has pointed out that the "intellectual challenges posed by epidemics were greatest when they plainly came fresh and new from outside" (Paul Slack, "Introduction," in Rosenberg, Epidemics and Ideas [n. 2], p. 5).
88. Conant oral history (n. 3), draft, pp. 108-9.
89. Conant to Paul Volberding, 1 October 1981, KSN, binder 1981-2/1982.
90. Donald F. Austin to William Kerr, 2 October 1981, ibid.; "[CDC] Case [and Control] Consent Form[s] for Interview and Specimen Collection," [n.d.], author's collection, courtesy of Selma Dritz; Charles Petit, "The Rare Diseases Striking Gay Men," San Francisco Chronicle, 20 October 1981, p. 20; Etheridge, Sentinel for Health (n. 13), p. 326; H. W. Jaffe et al., "National Case-Control Study of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia in Homosexual Men: Part 1, Epidemiologic Results," Ann. Intern. Med., 1983, 99 (2): 145- 51; M. Rogers et al., "National Case-Control Study of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia in Homosexual Men: Part 2, Laboratory Results," Ann. Intern. Med., 1983, 99 (2): 151-58.
91. Donald F. Austin to William Kerr, 2 October 1981, ibid.; "[CDC] Case [and Control] Consent Form[s] for Interview and Specimen Collection," [n.d.], author's collection, courtesy of Selma Dritz; Charles Petit, "The Rare Diseases Striking Gay Men," San Francisco Chronicle, 20 October 1981, p. 20; Etheridge, Sentinel for Health (n. 13), p. 326; H. W. Jaffe et al., "National Case-Control Study of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia in Homosexual Men: Part 1, Epidemiologic Results," Ann. Intern. Med., 1983, 99 (2): 145- 51; M. Rogers et al., "National Case-Control Study of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia in Homosexual Men: Part 2, Laboratory Results," Ann. Intern. Med., 1983, 99 (2): 151-58.
92. Donald F. Austin to William Kerr, 2 October 1981, ibid.; "[CDC] Case [and Control] Consent Form[s] for Interview and Specimen Collection," [n.d.], author's collection, courtesy of Selma Dritz; Charles Petit, "The Rare Diseases Striking Gay Men," San Francisco Chronicle, 20 October 1981, p. 20; Etheridge, Sentinel for Health (n. 13), p. 326; H. W. Jaffe et al., "National Case-Control Study of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia in Homosexual Men: Part 1, Epidemiologic Results," Ann. Intern. Med., 1983, 99 (2): 145- 51; M. Rogers et al., "National Case-Control Study of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia in Homosexual Men: Part 2, Laboratory Results," Ann. Intern. Med., 1983, 99 (2): 151-58.
93. Donald F. Austin to William Kerr, 2 October 1981, ibid.; "[CDC] Case [and Control] Consent Form[s] for Interview and Specimen Collection," [n.d.], author's collection, courtesy of Selma Dritz; Charles Petit, "The Rare Diseases Striking Gay Men," San Francisco Chronicle, 20 October 1981, p. 20; Etheridge, Sentinel for Health (n. 13), p. 326; H. W. Jaffe et al., "National Case-Control Study of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia in Homosexual Men: Part 1, Epidemiologic Results," Ann. Intern. Med., 1983, 99 (2): 145-51; M. Rogers et al., "National Case-Control Study of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia in Homosexual Men: Part 2, Laboratory Results," Ann. Intern. Med., 1983, 99 (2): 151-58.
94. Donald F. Austin to William Kerr, 2 October 1981, ibid.; "[CDC] Case [and Control] Consent Form[s] for Interview and Specimen Collection," [n.d.], author's collection, courtesy of Selma Dritz; Charles Petit, "The Rare Diseases Striking Gay Men," San Francisco Chronicle, 20 October 1981, p. 20; Etheridge, Sentinel for Health (n. 13), p. 326; H. W. Jaffe et al., "National Case-Control Study of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia in Homosexual Men: Part 1, Epidemiologic Results," Ann. Intern. Med., 1983, 99 (2): 145- 51; M. Rogers et al., "National Case-Control Study of Kaposi's Sarcoma and Pneumocystis carinii Pneumonia in Homosexual Men: Part 2, Laboratory Results," Ann. Intern. Med., 1983, 99 (2): 151-58.
95. Abrams oral history (n. 3), pp. 4-5.
96. Abrams maintains that in the fall and winter of 1981, he cared for the first six men in San Francisco known to have what soon was to be named AIDS: "Declaration of Donald Ira Abrams, M.D., 8 October 1984, in Support of a Temporary Restraining Order to Close the Bathhouses," 10 October 1984, Superior Court of the State of California in and for the City and County of San Francisco, drawer "Bathhouses," folder "10-10-84 Declarations in Support, vol. 1," Dean Echenberg papers, San Francisco Department of Public Health, Bureau of Epidemiology and Communicable Disease Control, San Francisco, Calif.
97. Conant to Ziegler, 19 November 1981, KSN, binder 1981-2/1982.
98. Ziegler's summary of the 15 September 1981 meeting was one of the first official publications from the NCI on the epidemic: John L. Ziegler, "Meeting Highlights: Kaposi's Sarcoma in Homosexual Men," J. Nat. Cancer Inst., 1982, 68 (2): 337-38; Ziegler oral history (n. 3), draft, pp. 8-10.
99. Ziegler's summary of the 15 September 1981 meeting was one of the first official publications from the NCI on the epidemic: John L. Ziegler, "Meeting Highlights: Kaposi's Sarcoma in Homosexual Men," J. Nat. Cancer Inst., 1982, 68 (2): 337-38; Ziegler oral history (n. 3), draft, pp. 8-10.
100. Ziegler oral history (n. 3), draft, pp. 7, 10-11.
101. Ziegler to Frank J. Rauscher, Jr., 23 September 1981, KSN, binder 1981-2/1982. Michael A. Friedman, interim director of the UCSF Cancer Research Institute, likewise outlined the clinic's research ambitions in approaching the National Cancer Institute for funds for a nurse-coordinator; NCI funds for this purpose were not obtained: Friedman to John S. MacDonald, 23 September 1981, ibid.
102. Ziegler oral history (n. 3), draft, p. 12.
103. Conant to Mitchell Friedlaender, 8 March 1982, KSN, binder 3-12/1982.
104. "Kaposi [sic] Sarcoma Clinic. UC Departments of Dermatology-Oncology. Patient Protocol," 1 February 1982, folder "AIDS - KS patients," John L. Ziegler papers, AHPA.
105. Conant to Bud Silverman and Francina Lozada, 11 November 1981, KSN, binder 1981-2/1982; Lozada et al., "Kaposi's Sarcoma Puzzle" (n. 48). For more on the role of the UCSF School of Dentistry in AIDS treatment and research, including the identification of hairy leukoplakia as an AIDS-defining condition, see the oral histories with Deborah Greenspan and John Greenspan (n. 3).
106. John S. Greenspan to John Ziegler, Mark Conant, and Paul Volberding, "Subject: AIDS/Interim arrangements for tissue/serum bank," 15 October 1982, folder "AIDS -NIH Grant," John L. Ziegler papers, UCSF Library, Special Collections. According to Dr. Greenspan's records, the first specimen was received at the bank on 16 November 1982 (personal communication, 13 August 1994).
107. For a description of the early guidelines for specimen distribution, see Conant to Gary S. Wood, 18 November 1982, KSN, binder 3-12/1982. For the history of the specimen bank, see John S. Greenspan et al., "The UCSF AIDS Specimen Bank," Lab. Med., 1991, 22: 790-92; John Greenspan oral history (n. 3).
108. For a description of the early guidelines for specimen distribution, see Conant to Gary S. Wood, 18 November 1982, KSN, binder 3-12/1982. For the history of the specimen bank, see John S. Greenspan et al., "The UCSF AIDS Specimen Bank," Lab. Med., 1991, 22: 790-92; John Greenspan oral history (n. 3).
109. Conant to Paul Dague, 25 June 1982, KSN, binder 3-12/1982. Dague died of AIDS-related causes in January 1984: "Counselor of Gays Dies of AIDS-Linked Illness," San Francisco Chronicle, 21 January 1984, p. 14. For the effect of his illness and death on KS Clinic staff, see the oral histories with Conant and Schietinger (n. 3).
110. Conant oral history (n. 3), draft, pp. 116-17; see also Conant to Robert S. Wallenstein, M.D., 27 October 1981, KSN, binder 1981-2/1982.
111. Schietinger oral history (n. 3), draft, p. 16.
112. Ibid., pp. 56-57. Schietinger left the KS Clinic in May 1983 to pursue her interest in providing psychological support for AIDS patients. She joined the Shanti Project, an organization that, according to its letterhead, provides "volunteer counseling for persons facing life-threatening illness and bereavement." By 1983 Shanti, its effort now focused on the AIDS epidemic, was a major force among the community organizations providing AIDS support services that were beginning to form in San Francisco and elsewhere. Included in Shanti's services was a counseling program begun for patients and staff of the inpatient AIDS ward at SFGH soon after it opened in mid-1983: Linda Maxey, "Counseling Program at S.F.G.H.," Eclipse, The Shanti Project Newsletter, summer 1984, pp. 4-5.
113. Ibid., pp. 56-57. Schietinger left the KS Clinic in May 1983 to pursue her interest in providing psychological support for AIDS patients. She joined the Shanti Project, an organization that, according to its letterhead, provides "volunteer counseling for persons facing life-threatening illness and bereavement." By 1983 Shanti, its effort now focused on the AIDS epidemic, was a major force among the community organizations providing AIDS support services that were beginning to form in San Francisco and elsewhere. Included in Shanti's services was a counseling program begun for patients and staff of the inpatient AIDS ward at SFGH soon after it opened in mid-1983: Linda Maxey, "Counseling Program at S.F.G.H.," Eclipse, The Shanti Project Newsletter, summer 1984, pp. 4-5.
114. For a review of early community-based AIDS services, see Peter S. Arno, "The Nonprofit Sector's Response to the AIDS Epidemic: Community-Based Services in San Francisco," Amer. J. Pub. Health, 1986, 76: 1325-30.
115. [Helen Schietinger], "Dear Patient" handout, 4 January 1982, KSN, binder 1981-2/ 1982.
116. Andrew Moss to Conant, 23 June 1982, KSN, binder 3-12/1982, p. 1.
117. A. R. Moss et al., letter, "AIDS in the 'Gay' Areas of San Francisco," Lancet, 1983, 1: 923-24. See also Randy Shilts, "Startling Finding on 'Gay Disease,'" San Francisco Chronicle, 23 March 1983, p. 2.
118. A. R. Moss et al., letter, "AIDS in the 'Gay' Areas of San Francisco," Lancet, 1983, 1: 923-24. See also Randy Shilts, "Startling Finding on 'Gay Disease,'" San Francisco Chronicle, 23 March 1983, p. 2.
119. Schietinger oral history (n. 3), draft, p. 7.
120. The immunologic work consisted of HLA (human leukocyte antigen) typing and T-cell, B-cell, and complement studies. The T-cell studies were to be coordinated with those being performed on patients with "gay lymph node syndrome": Conant to Kaposi Sarcoma Study Group, 6 November 1981, KSN, binder 1981-2/1982.
121. "Dear Patient" hand-out (n. 93).
122. "Kaposi [sic] Sarcoma Clinic" (n. 84), p. 2.
123. Conant to Hiro Tokubo, 8 October 1981, KSN, binder 1981-2/1982.
124. Schietinger oral history (n. 3), draft, pp. 69-70, 88-91.
125. "UCSF Receives National Cancer Institute Grant for A.I.D.S. Research," UCSF News/Public Information Services, 12 May 1983, folder "AIDS - ACS [American Cancer Society] grant," Ziegler papers, AHPA.
126. Schietinger oral history (n. 3), draft, pp. 13-14.
127. W. Lawrence Drew et al., "Cytomegalovirus [CMV] and Kaposi's Sarcoma in Young Homosexual Men," Lancet, 1982, 2: 125-27. For a discussion of the possible role of CMV, see David T. Durack, editorial, "Opportunistic Infections and Kaposi's Sarcoma in Homosexual Men," N. Engl. J. Med., 1981, 305 (24): 1465-67.
128. W. Lawrence Drew et al., "Cytomegalovirus [CMV] and Kaposi's Sarcoma in Young Homosexual Men," Lancet, 1982, 2: 125-27. For a discussion of the possible role of CMV, see David T. Durack, editorial, "Opportunistic Infections and Kaposi's Sarcoma in Homosexual Men," N. Engl. J. Med., 1981, 305 (24): 1465-67.
129. Levy's publication on the retrovirus appeared in August 1984, a few months after the joint announcements by the Montagnier and Gallo groups of the isolation of a retrovirus, HTLV-III, later renamed HIV (human immunodeficiency virus): J. A. Levy et al., "Isolation of Lymphocytopathic Retroviruses from San Francisco Patients with AIDS," Science, 1984, 225: 840-42. Also see Levy oral history (n. 3).
130. The clinic's integrated approach might be considered a forerunner of the so-called "San Francisco model" of comprehensive and coordinated AIDS care. For analysis of the model, see Deborah Russell, "The San Francisco Model: Lessons from the First Decade of the AIDS Crisis" (M.A. thesis, San Francisco State University, 1993).
131. For discussions of federal funding for AIDS research, see Fox, "AIDS and the American Health Polity" (n. 45); Victoria A. Harden, "The NIH and Biomedical Research on AIDS," in AIDS and the Public Debate, ed. Caroline Hannaway, Victoria A. Harden, and John Parascandola (Amsterdam: IOS Press, 1995), pp. 30-46.
132. For discussions of federal funding for AIDS research, see Fox, "AIDS and the American Health Polity" (n. 45); Victoria A. Harden, "The NIH and Biomedical Research on AIDS," in AIDS and the Public Debate, ed. Caroline Hannaway, Victoria A. Harden, and John Parascandola (Amsterdam: IOS Press, 1995), pp. 30-46.
133. The phrase comes from the oral history with the epidemiologist Andrew Moss, who provides a colorful account of "bootlegging" funds for early AIDS research from existing grants: Moss oral history (n. 3), draft, p. 18.
134. The first coverage of AIDS on a national television network occurred in December 1981 - James Curran's forty-five-second appearance on "Good Morning America": Kinsella, Covering the Plague (n. 12), p. 127.
135. For a description of the San Francisco gay community's gradual awakening to the existence of the AIDS epidemic, see the oral history with Michael Helquist (n. 3). The homosexual community in New York City may have been aware of the epidemic earlier than gay men elsewhere because of a series of articles by Lawrence Mass, M.D., beginning in the summer of 1981 in the New York Native, a gay-oriented newspaper. See, for example, Lawrence Mass, "Cancer in the Gay Community," New York Native, 27 July-9 August 1981, pp. 1, 20, 21, 30;
136. idem, "Cancer as Metaphor," ibid., 24 August-9 September 1981, p. 13.
137. "Opportunistic Diseases: A Puzzling New Syndrome Afflicts Homosexual Men," Time, 21 December 1981, p. 68.
138. "AIDS Cases Diagnosed in 1980-1981," San Francisco Department of Public Health, table in author's collection, courtesy of Paul M. O'Malley, AIDS Office, San Francisco Department of Public Health.
139. Ziegler to Rauscher (n. 44), p. 1. See also "AIDS Reported Cases (from 7/81 to 4/ 30/92)," San Francisco Department of Public Health AIDS Office, author's collection, courtesy of Selma K. Dritz.
140. "Request for Cooperative Agreements Applications: RFA NIH-NCI-DCT-CTRP-82-13. Studies of Acquired Immuno-deficiency Syndrome (Kaposi's Sarcoma and Opportunistic Infections)," National Cancer Institute, NIH Guide for Grants and Contracts, 1982, 11 (9): 1 (13 August).
141. See, for example, William W. Darrow, Donald Barrett, Karla Jay, and Allen Young, "The Gay Report on Sexually Transmitted Diseases," Amer. J. Pub. Health, 1981, 71 (9): 1004-11.
142. S. K. Dritz, "Medical Aspects of Homosexuality," N. Engl. J. Med., 1980, 302: 463-64. Interviews with San Francisco physicians with gay practices underscore the awareness of the prevalence of sexually transmitted disease in the gay community, beginning in the 1970s: see oral histories with Richard Andrews, Robert Bolan, James Campbell, and James Owen (n. 3).
143. Selma Dritz oral history (n. 3), draft, pp. 7-8.
144. In November 1982, the CDC stated in print: "The etiology of the underlying immune deficiencies seen in AIDS cases is unknown. One hypothesis consistent with current observations is that a transmissible agent may be involved" (CDC, "Acquired Immune Deficiency Syndrome [AIDS]: Precautions for Clinical and Laboratory Staffs," MMWR, 1982, 31: 577). Yet as early as June 1981, according to Shilts, two hypotheses regarding etiology had emerged at daily meetings of the CDC KSOI task force: some environmental substance - the leading candidate was "poppers" - causing immune deficiency, or "some infectious agent, either one new virus or some combination of old microbes working together in a new way" (Shilts, And the Band Played On [n. 6], p. 71). For discussion of the debates about etiology, see Epstein, Impure Science (n. 4), pp. 45-178.
145. In November 1982, the CDC stated in print: "The etiology of the underlying immune deficiencies seen in AIDS cases is unknown. One hypothesis consistent with current observations is that a transmissible agent may be involved" (CDC, "Acquired Immune Deficiency Syndrome [AIDS]: Precautions for Clinical and Laboratory Staffs," MMWR, 1982, 31: 577). Yet as early as June 1981, according to Shilts, two hypotheses regarding etiology had emerged at daily meetings of the CDC KSOI task force: some environmental substance - the leading candidate was "poppers" - causing immune deficiency, or "some infectious agent, either one new virus or some combination of old microbes working together in a new way" (Shilts, And the Band Played On [n. 6], p. 71). For discussion of the debates about etiology, see Epstein, Impure Science (n. 4), pp. 45-178.
146. In November 1982, the CDC stated in print: "The etiology of the underlying immune deficiencies seen in AIDS cases is unknown. One hypothesis consistent with current observations is that a transmissible agent may be involved" (CDC, "Acquired Immune Deficiency Syndrome [AIDS]: Precautions for Clinical and Laboratory Staffs," MMWR, 1982, 31: 577). Yet as early as June 1981, according to Shilts, two hypotheses regarding etiology had emerged at daily meetings of the CDC KSOI task force: some environmental substance - the leading candidate was "poppers" - causing immune deficiency, or "some infectious agent, either one new virus or some combination of old microbes working together in a new way" (Shilts, And the Band Played On [n. 6], p. 71). For discussion of the debates about etiology, see Epstein, Impure Science (n. 4), pp. 45-178.
147. The oral histories testify to the fact that "poppers" as a cause or cofactor of KS were a topic of discussion at the KS Study Group and within San Francisco's gay community, but I have found no evidence of research on the subject at UCSF or SFGH. However, they were a subject of research at the CDC and elsewhere. In San Francisco in the early 1980s a community group, the Committee to Monitor Poppers, lobbied against the use of poppers and for research on their possible connection with AIDS. See Nicholas Fain, "The Controversy over Poppers and Other Inhalant Drugs," The Advocate, 5 August 1982, pp. 23-25, 27; Evelyn Hsu, "Warning on Gay Sex Enhancers," San Francisco Chronicle, 24 March 1982, p. 3; Kenneth H. Mayer, editorial, "Inhalation-Induced Immunosuppression: Sniffing Out the Volatile Nitrite-AIDS Connection," Pharmacotherapy, 1984, 4: 235-36.
148. The oral histories testify to the fact that "poppers" as a cause or cofactor of KS were a topic of discussion at the KS Study Group and within San Francisco's gay community, but I have found no evidence of research on the subject at UCSF or SFGH. However, they were a subject of research at the CDC and elsewhere. In San Francisco in the early 1980s a community group, the Committee to Monitor Poppers, lobbied against the use of poppers and for research on their possible connection with AIDS. See Nicholas Fain, "The Controversy over Poppers and Other Inhalant Drugs," The Advocate, 5 August 1982, pp. 23-25, 27; Evelyn Hsu, "Warning on Gay Sex Enhancers," San Francisco Chronicle, 24 March 1982, p. 3; Kenneth H. Mayer, editorial, "Inhalation-Induced Immunosuppression: Sniffing Out the Volatile Nitrite-AIDS Connection," Pharmacotherapy, 1984, 4: 235-36.
149. The oral histories testify to the fact that "poppers" as a cause or cofactor of KS were a topic of discussion at the KS Study Group and within San Francisco's gay community, but I have found no evidence of research on the subject at UCSF or SFGH. However, they were a subject of research at the CDC and elsewhere. In San Francisco in the early 1980s a community group, the Committee to Monitor Poppers, lobbied against the use of poppers and for research on their possible connection with AIDS. See Nicholas Fain, "The Controversy over Poppers and Other Inhalant Drugs," The Advocate, 5 August 1982, pp. 23-25, 27; Evelyn Hsu, "Warning on Gay Sex Enhancers," San Francisco Chronicle, 24 March 1982, p. 3; Kenneth H. Mayer, editorial, "Inhalation-Induced Immunosuppression: Sniffing Out the Volatile Nitrite-AIDS Connection," Pharmacotherapy, 1984, 4: 235-36.
150. Speculation about etiology is rife in the early medical literature on AIDS. As an example, see Durack, "Opportunistic Infections" (n. 104).
151. Jean L. Marx, "New Disease Baffles Medical Community," Science, 1982, 217: 618-21 (13 August).
152. Harden, "NIH and Biomedical Research on AIDS" (n. 107), p. 31; Françoise Barré- Sinoussi et al., "Isolation of a T-lymphotropic Retrovirus from a Patient at Risk for Acquired Immune Deficiency Syndrome (AIDS)," Science, 1983, 220: 868-71.
153. Harden, "NIH and Biomedical Research on AIDS" (n. 107), p. 31; Françoise Barré-Sinoussi et al., "Isolation of a T-lymphotropic Retrovirus from a Patient at Risk for Acquired Immune Deficiency Syndrome (AIDS)," Science, 1983, 220: 868-71.
154. Conant to G. Thomas Jansen, M.D., 16 October 1981, KSN, binder 1981-2/1982.
155. Durack, "Opportunistic Infections" (n. 104).
156. Curran, "AIDS - Two Years Later" (n. 16), quotation on p. 609.
157. Fox pointed out that "until 1987 the definition of a reportable case of AIDS used by the Centers for Disease Control (CDC) excluded many cases of illness related to HIV infection"; as a result, he maintained, surveillance policy understated the severity and cost of the epidemic (Fox, "AIDS and the American Health Polity" [n. 45], quotation on p. 328). A nurse practitioner in the AIDS screening clinic at SFGH created a list of conditions that he called "markers of suspicion" for AIDS, which he and others used in differential diagnosis; yet these "marker" disorders were not included in the CDC list of AIDS-defining conditions: Gary Carr oral history (n. 3).
158. Fox pointed out that "until 1987 the definition of a reportable case of AIDS used by the Centers for Disease Control (CDC) excluded many cases of illness related to HIV infection"; as a result, he maintained, surveillance policy understated the severity and cost of the epidemic (Fox, "AIDS and the American Health Polity" [n. 45], quotation on p. 328). A nurse practitioner in the AIDS screening clinic at SFGH created a list of conditions that he called "markers of suspicion" for AIDS, which he and others used in differential diagnosis; yet these "marker" disorders were not included in the CDC list of AIDS-defining conditions: Gary Carr oral history (n. 3).
159. The disparity between the surveillance and clinical definitions had grown so apparent by 1985 that Volberding was prompted to suggest that the CDC create "a second level definition of AIDS which would supplement rather than replace the existing surveillance definition" (Volberding to James A. Curran, 23 April 1985, folder "From PV [Paul Volberding], Mar.-Apr. 1985," carton 1, SFGH Ward 86 papers, AHPA).
160. Dritz oral history (n. 3), p. 24; John Greenspan oral history, draft, pp. 82-85; Ziegler oral history, draft, pp. 15-17. An addendum to Ziegler's paper in the Lancet noted that physicians in Tucson, Arizona; Bethesda, Maryland; and Los Angeles, California, had encountered similar cases of Burkitt's lymphoma in gay men: J. L. Ziegler et al., "Outbreak of Burkitt's-Like Lymphoma in Homosexual Men," Lancet, 1982, 2: 631-33.
161. Dritz oral history (n. 3), p. 24; John Greenspan oral history, draft, pp. 82-85; Ziegler oral history, draft, pp. 15-17. An addendum to Ziegler's paper in the Lancet noted that physicians in Tucson, Arizona; Bethesda, Maryland; and Los Angeles, California, had encountered similar cases of Burkitt's lymphoma in gay men: J. L. Ziegler et al., "Outbreak of Burkitt's-Like Lymphoma in Homosexual Men," Lancet, 1982, 2: 631-33.
162. Dritz oral history (n. 3), p. 24; John Greenspan oral history, draft, pp. 82-85; Ziegler oral history, draft, pp. 15-17. An addendum to Ziegler's paper in the Lancet noted that physicians in Tucson, Arizona; Bethesda, Maryland; and Los Angeles, California, had encountered similar cases of Burkitt's lymphoma in gay men: J. L. Ziegler et al., "Outbreak of Burkitt's-Like Lymphoma in Homosexual Men," Lancet, 1982, 2: 631-33.
163. Dritz oral history (n. 3), p. 24; John Greenspan oral history, draft, pp. 82-85; Ziegler oral history, draft, pp. 15-17. An addendum to Ziegler's paper in
164. Ziegler oral history (n. 3), draft, p. 15.
165. Ibid., pp. 63-64, 67.
166. Deborah Greenspan oral history (n. 3), draft, p. 15;
167. John Greenspan oral history, draft, pp. 138-41;
168. Greenspan et al., "Oral 'Hairy' Leucoplakia in Male Homosexuals: Evidence of Association with both Papillomavirus and a Herpes-group Virus," Lancet, 1984, 2: 831-34
169. ; G. S. Carr, B. Newlin, and G. Gee, "AIDS-Related Conditions," in AIDS: Concepts in Nursing Practice, ed. G. Gee and T. Moran (Baltimore: Williams and Wilkins, 1988), pp. 104-22.
170. Abrams oral history (n. 3), draft, p. 15.
171. Ibid., pp. 15-17; Donald I. Abrams, "Evaluation of Lymphadenopathy in Homosexual Men: A Clinical Study," [n.d.], author's collection, courtesy of Evelyne Lennette; "Declaration of Donald I. Abrams" (n. 77); CDC, "Persistent Generalized Lymphadenopathy in Homosexual Males," MMWR, 1982, 31: 249-51 (21 May).
172. Ibid., pp. 15-17; Donald I. Abrams, "Evaluation of Lymphadenopathy in Homosexual Men: A Clinical Study," [n.d.], author's collection, courtesy of Evelyne Lennette; "Declaration of Donald I. Abrams" (n. 77); CDC, "Persistent Generalized Lymphadenopathy in Homosexual Males," MMWR, 1982, 31: 249-51 (21 May).
173. Ibid., pp. 15-17; Donald I. Abrams, "Evaluation of Lymphadenopathy in Homosexual Men: A Clinical Study," [n.d.], author's collection, courtesy of Evelyne Lennette; "Declaration of Donald I. Abrams" (n. 77); CDC, "Persistent Generalized Lymphadenopathy in Homosexual Males," MMWR, 1982, 31: 249-51 (21 May).
174. Ibid., pp. 15-17; Donald I. Abrams, "Evaluation of Lymphadenopathy in Homosexual Men: A Clinical Study," [n.d.], author's collection, courtesy of Evelyne Lennette; "Declaration of Donald I. Abrams" (n. 77); CDC, "Persistent Generalized Lymphadenopathy in Homosexual Males," MMWR, 1982, 31: 249-51 (21 May).
175. "Acquired Immune Deficiency: Health Care Workers at Risk, Too," Medical World News, 6 December 1982, pp. 8, 13-14.
176. Abrams's concept of "pre-AIDS" was related to what by 1983 was being called AIDS-Related Complex or ARC. He was one of the originators of the term, which is now outmoded as HIV disease has come to be defined by parameters such as a positive HIV antibody test result, the CD4-cell count, and viral load: D. I. Abrams et al., "Persistent Diffuse Lymphadenopathy in Homosexual Men: Endpoint or Prodrome?" Ann. Intern. Med., 1984, 100: 801-08; Abrams oral history (n. 3), draft, pp. 15, 26, 34-42.
177. Abrams's concept of "pre-AIDS" was related to what by 1983 was being called AIDS- Related Complex or ARC. He was one of the originators of the term, which is now outmoded as HIV disease has come to be defined by parameters such as a positive HIV antibody test result, the CD4-cell count, and viral load: D. I. Abrams et al., "Persistent Diffuse Lymphadenopathy in Homosexual Men: Endpoint or Prodrome?" Ann. Intern. Med., 1984, 100: 801-08; Abrams oral history (n. 3), draft, pp. 15, 26, 34-42.
178. Abrams oral history (n. 3), draft, pp. 39-40.
179. Dritz oral history (n. 3), p. 24. This observation underscores the need for comparative studies on AIDS definition and diagnosis in different geographic locations.
180. The exact date of the demise of the clinic and study group is unclear. The study group continued to meet at least into the early months of 1985, when Conant circulated a questionnaire asking attendees to indicate whether they thought it should continue: Marcus A. Conant, "Questionnaire to the Kaposi's Sarcoma Study Group. Re: Meetings for 1985," [n.d., but with note, "mailed 2/12/85"], folder "From PV [Paul Volberding] Jan.-Feb. 1985," carton 1, SFGH Ward 86 papers, AHPA.
181. Many of the oral histories (n. 3) mention the importance of the KS Study Group as a site for exchanging information and organizing AIDS-related activities.
182. Conant oral history (n. 3), draft, p. 161.
183. Volberding oral history (n. 3), draft, p. 19.
184. Ibid., p. 64.
185. CDC, "Follow-up on Kaposi's Sarcoma and Pneumocystis Pneumonia" (n. 52).
186. In 1982, the San Francisco health department reported 93.8% of AIDS cases in gay or bisexual males, and 5.3% in gay or bisexual male intravenous drug users; it reported no cases in heterosexuals, hemophiliacs, or any other subpopulation: "AIDS Reported Cases (from 7/81 to 4/30/92)" (n. 112). Elsewhere, the epidemic had a different appearance. A March 1983 CDC report indicated four groups at risk of contracting AIDS - homosexual men with multiple sex partners, users of intravenous drugs, recent Haitian immigrants to the United States, and hemophiliacs: Oppenheimer, "Eye of the Storm" (n. 13), pp. 280- 84.
187. In 1982, the San Francisco health department reported 93.8% of AIDS cases in gay or bisexual males, and 5.3% in gay or bisexual male intravenous drug users; it reported no cases in heterosexuals, hemophiliacs, or any other subpopulation: "AIDS Reported Cases (from 7/81 to 4/30/92)" (n. 112). Elsewhere, the epidemic had a different appearance. A March 1983 CDC report indicated four groups at risk of contracting AIDS - homosexual men with multiple sex partners, users of intravenous drugs, recent Haitian immigrants to the United States, and hemophiliacs: Oppenheimer, "Eye of the Storm" (n. 13), pp. 280-84.
188. To avoid the perceived stigma of terms such as GRID, "acquired immune deficiency syndrome" (later, "acquired immunodeficiency syndrome"), abbreviated first as A.I.D.S. and then as AIDS, came into use early in 1982: Grmek, History of AIDS (n. 5), p. 32. Grmek dates the "offical use of the acronym" to the summer of 1982.
189. The term "acquired immune deficiency syndrome" was in use before then; see, for example, p. 1 of the 1 April 1982 issue of The Baphron, the newsletter of Bay Area Physicians for Human Rights. For comment on the social connotations of the term AIDS, see Susan Sontag, AIDS and Its Metaphors (New York: Farrar, Straus and Giroux, 1989).
190. Volberding oral history (n. 3), draft, pp. 9-12.
191. I thank Russell Maulitz for bringing this relationship to my attention.
192. For an illustration of the constraints of disease-classification systems, see H. I. Kushner and L. S. Kiessling, "The Controversy over the Classification of Gilles de La Tourette's Syndrome, 1800-1995," Perspect. Biol. Med., 1996, 39 (3): 409-35.
193. For work on national AIDS policies, see, for example, David L. Kirp and Ronald Bayer, eds., AIDS in the Industrialized Democracies: Passions, Politics, and Policies (New Brunswick, N.J.: Rutgers University Press, 1992). Also see the four essays in "Part III: The International Consequences of AIDS," of Hannaway, Harden, and Parascandola, eds., AIDS and the Public Debate (n. 107), pp. 139-201; and Jamie L. Feldman, Plague Doctors: Responding to the AIDS Epidemic in France and America (Westport, Conn.: Bergin and Garvey, 1995). For the impact of AIDS on a small community, see Abraham Verghese, My Own Country: A Doctor's Story of a Town and Its People in the Age of AIDS (New York: Simon and Schuster, 1994).
194. For work on national AIDS policies, see, for example, David L. Kirp and Ronald Bayer, eds., AIDS in the Industrialized Democracies: Passions, Politics, and Policies (New Brunswick, N.J.: Rutgers University Press, 1992). Also see the four essays in "Part III: The International Consequences of AIDS," of Hannaway, Harden, and Parascandola, eds., AIDS and the Public Debate (n. 107), pp. 139-201; and Jamie L. Feldman, Plague Doctors: Responding to the AIDS Epidemic in France and America (Westport, Conn.: Bergin and Garvey, 1995). For the impact of AIDS on a small community, see Abraham Verghese, My Own Country: A Doctor's Story of a Town and Its People in the Age of AIDS (New York: Simon and Schuster, 1994).
195. For work on national AIDS policies, see, for example, David L. Kirp and Ronald Bayer, eds., AIDS in the Industrialized Democracies: Passions, Politics, and Policies (New Brunswick, N.J.: Rutgers University Press, 1992). Also see the four essays in "Part III: The International Consequences of AIDS," of Hannaway, Harden, and Parascandola, eds., AIDS and the Public Debate (n. 107), pp. 139-201; and Jamie L. Feldman, Plague Doctors: Responding to the AIDS Epidemic in France and America (Westport, Conn.: Bergin and Garvey, 1995). For the impact of AIDS on a small community, see Abraham Verghese, My Own Country: A Doctor's Story of a Town and Its People in the Age of AIDS (New York: Simon and Schuster, 1994).
196. For work on national AIDS policies, see, for example, David L. Kirp and Ronald Bayer, eds., AIDS in the Industrialized Democracies: Passions, Politics, and Policies (New Brunswick, N.J.: Rutgers University Press, 1992). Also see the four essays in "Part III: The International Consequences of AIDS," of Hannaway, Harden, and Parascandola, eds., AIDS and the Public Debate (n. 107), pp. 139-201; and Jamie L. Feldman, Plague Doctors: Responding to the AIDS Epidemic in France and America (Westport, Conn.: Bergin and Garvey, 1995). For the impact of AIDS on a small community, see Abraham Verghese, My Own Country: A Doctor's Story of a Town and Its People in the Age of AIDS (New York: Simon and Schuster, 1994).