"Patient Zero": The absence of a patient's view of the early North American AIDS epidemic

Bulletin of the History of Medicine

Volumn 88, Issue 1, 2014, Pages 161-194

  McKay, Richard A ^a  

^a UNIVERSITY OF CAMBRIDGE   (United Kingdom)

Author keywords

"Patient Zero"; Criminalization; Epidemic; Ga tan Dugas; HIV AIDS; North America; Origin; Patient; Public health; Randy Shilts

Indexed keywords

ACQUIRED IMMUNE DEFICIENCY SYNDROME; ART; ARTICLE; ATTITUDE TO HEALTH; CANADA; DISEASE TRANSMISSION; EPIDEMIC; HISTORY; PATIENT PREFERENCE; UNITED STATES; VIROLOGY;

ACQUIRED IMMUNODEFICIENCY SYNDROME; CANADA; EPIDEMICS; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HISTORY, 20TH CENTURY; PATIENT PREFERENCE; UNITED STATES;

EID: 84899134088     PISSN: 00075140     EISSN: None     Source Type: Journal    
DOI: 10.1353/bhm.2014.0005     Document Type: Article

References (145)

1. Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (hereafter Band) (New York: St. Martin's, 1987), 412.
2. Shilts and other writers have spelled Dugas's first name in various ways, with or without a diaeresis above the "e" (i.e., Gaetan or Gaëtan). When quoting Shilts and other authors, I have reproduced their spelling exactly. In all other cases I have employed the spelling found in Dugas's obituary notice and other Québécois sources, with an acute accent above the "e." See "DUGAS (Gaétan)," Le Soleil, March 31, 1984, H14.
3. Dugas to Ray Redford, letter, January 22, 1982, Redford's personal papers, Vancouver. For ease of reading I have quoted exactly from Dugas's letter and reproduced the original spelling and grammatical errors without marking each one with sic. Dugas wrote his message in an elegant cursive on the backs of three 12.8 × 19.8 cm postcards, explaining at one point, "Ray, today is so cold again than I dear not go outside-to get some paper to write. Sorry about these little cards but you would understand if you be here."
4. Ibid., underline in original. The photographs of Dugas and the quotations from his letter appear with the generous permission of his two surviving sisters. Dugas's sisters and Ray Redford have expressly asked for their privacy to be respected and for no media representatives of any kind to contact them.
5. Shilts, Band (n. 1), 158.
6. Howard Markel, "Journals of the Plague Years: Documenting the History of the AIDS Epidemic in the United States," Amer. J. Pub. Health 91 (2001): 1025-1028.
7. Friedman-Kien mentions Dugas by name in an interview published in Ronald Bayer and Gerald M. Oppenheimer, AIDS Doctors: Voices from the Epidemic (Oxford: Oxford University Press, 2000), 60-61.
8. Conant's view was summarized by Shilts in Band (n. 1), 413
9. he reiterated this position when I met with him for an interview on July 27, 2007. The interviews recorded for this project were deposited in the British Library's Sound Archive (C1491 Imagining Patient Zero: Interviews About the History of the North American HIV/AIDS Epidemic).
10. Shilts, Band (n. 1), 200. The author's handwritten dedication in Dritz's personal copy of Band frankly articulates his view: "To Selma Dritz-a hero in this story." Selma Dritz Papers (MSS 2009-04), courtesy of Archives and Special Collections, Library & Center for Knowledge Management, University of California, San Francisco (hereafter UCSF). All quotations from Shilts's unpublished work appear with permission given by the Shilts Literary Trust.
11. At the 2008 annual meeting of the American Association for the History of Medicine, for example, I met a psychiatrist who reported using Dugas's case in teaching as a "classic" example of sociopathic behavior. See also Peter Cassels, "Decades-Old Laws Still Consider HIV a 'Deadly Weapon,'" EDGE, April 26, 2010, accessed December 4, 2013, http://www.edgeboston.com/index.php?ch=news&sc=&sc2=features&sc3=&id=104976.
12. Mirko D. Grmek, History of AIDS: Emergence and Origin of a Modern Pandemic, trans. Russell C. Maulitz and Jacalyn Duffn (Princeton, N.J.: Princeton University Press, 1990), 18-19.
13. Peter Baldwin, Disease and Democracy: The Industrialized World Faces AIDS (Berkeley: University of California Press, 2005), 90.
14. Douglas Crimp, "How to Have Promiscuity in an Epidemic" and "Randy Shilts's Miserable Failure," in Crimp, Melancholia and Moralism: Essays on AIDS and Queer Politics (Cambridge, Mass.: MIT Press, 2002), 43-82 and 117-28
15. Priscilla Wald, Contagious: Cultures, Carriers, and the Outbreak Narrative (Durham, N.C.: Duke University Press, 2008), 213-263.
16. Crimp, "How to Have Promiscuity" (n. 11), 53.
17. Zero Patience, directed by John Greyson (1993; New York: Strand Releasing Home Video, 2005), DVD.
18. Jan Zita Grover, "AIDS: Keywords," October 43 (1987): 17-30.
19. Roy Porter, "The Patient's View: Doing Medical History from Below," Theory & Soc. 14 (1985): 175-198, quotations on 176 and 181.
20. Ibid., 182.
21. Wald, Contagious (n. 11), 233.
22. Flurin Condrau, "The Patient's View Meets the Clinical Gaze," Soc. Hist. Med. 20 (2007): 525-540.
23. For a discussion of Talcott Parsons's "sick role" in relation to changes in health consumption and shifts in the professional organization of health care, see Chris Shilling, "Culture, the 'Sick Role' and the Consumption of Health," Brit. J. Sociol. 53 (2002): 621-638.
24. For example, Bayer and Oppenheimer, AIDS Doctors (n. 6), 63-64.
25. Steven Epstein, Impure Science: AIDS, Activism, and the Politics of Knowledge (Berkeley: University of California Press, 1996), 45-66, quotation on 66
26. Jennifer Brier, Infectious Ideas: U.S. Political Responses to the AIDS Crisis (Chapel Hill: University of North Carolina Press, 2009), 11-44.
27. Judith Walzer Leavitt, Typhoid Mary: Captive to the Public's Health (Boston: Beacon, 1996), 14-38, 162-301.
28. Ibid., 234-38.
29. Leavitt acknowledges the important work of the ethicist Timothy F. Murphy, who criticized Shilts's treatment of Dugas; see Murphy, Ethics in an Epidemic: AIDS, Morality, and Culture (Berkeley: University of California Press, 1994), 1-19.
30. Stephen Hawking, A Brief History of Time: From the Big Bang to Black Holes (New York: Bantam Books, 1988)
31. Salman Rushdie, The Satanic Verses (New York: Viking, 1989)
32. "The Most Memorable Books of the Last 25 Years," USA Today, April 8, 2007, accessed December 3, 2013, http://www.usatoday.com/life/top25-books.htm
33. "'Books That Shaped America' Exhibition to Open June 25," June 21, 2012, accessed December 3, 2013, http://www.loc.gov/today/pr/2012/12-123.html.
34. I have expanded elsewhere on Dugas's experience with the changing meanings ascribed to his KS; see McKay, "Sex and Skin Cancer: Kaposi's Sarcoma Becomes the 'Stigmata of AIDS,' 1979-83," in A Medical History of Skin: Scratching the Surface, ed. Jonathan Reinarz and Kevin Siena (London: Pickering & Chatto, 2013), 113-127.
35. Ron Bluestein, "Cries and Whispers of an Epidemic," Advocate, November 24, 1987, 52-53, 63-65, 67, quotation on 65.
36. Patrick O'Neill, "Gay Reporter's AIDS Exposé Vents Anger over Epidemic," Oregonian, November 18, 1987, B1, B4.
37. Details about how Shilts researched Band can be found in Bluestein, "Cries" (n. 25)
38. Jeff Yarbrough, "The Life and Times of Randy Shilts," Advocate, June 15, 1993, 32-39
39. Garry Wills, "Randy Shilts: The Rolling Stone Interview," Rolling Stone, September 30, 1993, 46-49, 122-123.
40. San Francisco Public Library, James C. Hormel Gay and Lesbian Center, GLC 43, Randy Shilts Papers, Books, And the Band Played On (hereafter RS/Band), box 9, folder 9: "2nd book proposal," Overview, 1985, 1-2.
41. Ibid., 2.
42. RS/Band, box 4, folder 1: Book Proposal, n.d., 3.
43. Ibid., 6.
44. Bluestein, "Cries" (n. 25), 52.
45. "A Cluster of Kaposi's Sarcoma and Pneumocystis Carinii Pneumonia among Homosexual Male Residents of Los Angeles and Orange Counties, California," Morbid. Mortal. Weekly Rep. 31 (1982): 305-307
46. David M. Auerbach, William W. Darrow, Harold W. Jaffe, and James W. Curran, "Cluster of Cases of the Acquired Immune Defciency Syndrome: Patients Linked by Sexual Contact," Amer. J. Med. 76 (1984): 487-492.
47. William Darrow, interview with author, Miami, March 28, 2008.
48. According to a contemporary definition, the index case was "the first case in a family or other defined group to come to the attention of the investigator"; John M. Last, ed., A Dictionary of Epidemiology, 3rd ed. (New York: Oxford University Press, 1983).
49. Since the cluster study, "patient 0" has been used rather imprecisely in both medical and popular parlance as a synonym for the index case and the primary case-the first patient to become sick. Particularly noteworthy definitions of "zero" include "a worthless thing or person," "an absence or lack of anything," and "the starting-point, the absolute beginning"; see Oxford English Dictionary Online, s.v. "zero, n.," accessed August 10, 2006, http://dictionary.oed.com/cgi/entry/50291099.
50. Auerbach et al., "Cluster of Cases" (n. 33), 490-491.
51. Victor De Gruttola, Kenneth Mayer, and William Bennett, "AIDS: Has the Problem Been Adequately Assessed?," Revs. Infect. Dis. 8 (1986): 295-305.
52. Andrew R. Moss, "AIDS Without End," New York Rev. Books 35, no. 19 (1988): 60.
53. Randy Shilts, "Longer Incubation Period Reported," San Francisco Chronicle, April 18, 1985, 4.
54. Yarbrough, "Life" (n. 27), 37; emphasis in original.
55. Shilts's first article for this publication was on the growing popularity of gay courses in American colleges and universities: "What's Happening with Gay Studies U.S.A.?," Advocate, June 18, 1975, 9-10.
56. His health-related articles include "Alcoholism: A Look in Depth at How a National Menace Is Affecting the Gay Community," Advocate, February 25, 1976, 16-21
57. "V.D. and Other Sexually Transmitted Diseases in the Gay Community," Advocate, April 21, 1976, 14-18
58. "The Hazards of Sex," Advocate, December 15, 1976, 28-30, 32-33
59. "The Decade's Best-Kept Medical Secret: Hepatitis Doesn't Come From Needles," Advocate, January 12, 1977, 23-26.
60. Katie Leishman, "The Writing Cure," New York Times, March 5, 1994, 23.
61. Shilts, "Decade's Best-Kept Medical Secret" (n. 41), 23.
62. Ibid., 24.
63. Wayne April, "Doctors Brief 'Gay Leaders' on AIDS," Bay Area Reporter, April 7, 1983, 3, 18.
64. See, for example, Marcus Conant's refusal to provide Shilts with Dugas's name: Marcus A. Conant, "Founding the KS Clinic, and Continued AIDS Activism," interviews conducted by Sally Smith Hughes in 1992, 1995 in The AIDS Epidemic in San Francisco: The Medical Response, 1981-1984, Volume II, Regional Oral History Offce, Bancroft Library, University of California, Berkeley (hereafter Bancroft Library), 165-167, http://ark.cdlib.org/ark:/13030/kt7b69n8jn.
65. RS/Band, box 2, folder 32: Turner, Dan, "1-13-86" (interview notes), 12.
66. Bluestein, "Cries" (n. 25), 63.
67. Ibid.
68. It appears that when Popham repeated Gaétan's first name in New York, Shilts was able to confirm that the flight attendant Dan Turner had mentioned was "Patient Zero"; RS/Band, box 2, folder 25: Popham, Paul, Paul Popam [sic], 1986 (interview notes), 1.
69. Brier, Infectious Ideas (n. 20), 101-110.
70. Shilts, Band (n. 1), 196-197, 198.
71. James A. Michener, Hawaii (New York: Random House, 1959)
72. Wills, "Shilts" (n. 27), 49.
73. RS/Band, box 4, folder 1: Book Proposal, n.d., 19.
74. Wald, Contagious (n. 11), 215-217.
75. Bluestein, "Cries" (n. 25), 63.
76. For a very similar explanation for why Shilts had written the "Patient Zero" story, see Crimp, "How to Have Promiscuity" (n. 11), 52.
77. Philip Young, "Patient Zero: Man Who Gave the World AIDS," Northern Echo, April 9, 1988, 6.
78. Roger Ross, "Media Finds Easy Target in Dead Man," Q Magazine, December 15, 1987, 5.
79. UCSF, Marcus A. Conant Papers (MSS 98-39), 1/60, May 1986, Shilts to Conant, letter, May 14, 1986.
80. Auerbach et al., "Cluster of Cases" (n. 33), 489.
81. Desiree Conn, interview with author, Halifax, July 25, 2008.
82. Shilts, Band (n. 1), 200.
83. A sociological study of American gay bathhouses in the 1970s described "a continual parade of towel-clad men who glance into the rooms and occasionally stop to smile at, or briefy chat with, an occupant. Cruising, in the form of eye contact, a smile, or a gentle grope, also occurs between the men walking through the hallways"
84. Martin S. Weinberg and Colin J. Williams, "Gay Baths and the Social Organization of Impersonal Sex," Soc. Probs. 23 (1975-76): 124-136, 127.
85. Morbid. Mortal. Weekly Rep. 32 (1983): 101-103.
86. Selma E. Dritz, "Charting the Epidemiological Course of AIDS, 1981-1984," interviews conducted by Sally Smith Hughes in 1992 and 1993 in The AIDS Epidemic in San Francisco: The Medical Response, 1981-1984, Volume I, Bancroft Library, http://content.cdlib.org/ark:/13030/kt2m3n98v1/.
87. Epstein, Impure Science (n. 20), 64-65.
88. Michael Lynch, "Living with Kaposi's," Body Politic, November 1982, 31-37, quotation on 36.
89. See Richard Berkowitz and Michael Callen, How to Have Sex in an Epidemic: One Approach (New York: News From the Front Publications, 1983).
90. Brier, Infectious Ideas (n. 20), 26-44.
91. Ray Redford, "Notes for Richard McKay," appendix 4 in Richard A. McKay, "Imagining 'Patient Zero': Sexuality, Blame, and the Origins of the North American AIDS Epidemic" (DPhil thesis, University of Oxford, 2011), 333-348, quotation on 345.
92. RS/Band, box 2, folder 23: Patient Zero, Kevin Brown interview notes, 7.
93. Bob Tivey, interview with author, Toronto, September 7, 2008.
94. Noah Stewart, interview with author, Vancouver, September 3, 2007.
95. Berkowitz and Callen, How to Have Sex (n. 66), 5-14.
96. Stewart, interview (n. 71).
97. Though Dugas is not named in this letter, the details make it clear that he is the individual in question; Noah Stewart, "A Friend's Death," Angles, May 1984, 17.
98. See Guy Babineau, "The Prettiest One: Gaetan Dugas and the 'AIDS Mary' Myth," Xtra West, November 29, 2001, 13-15.
99. See also Crimp, "How to Have Promiscuity" (n. 11), 51. The Post's headline leaves it unclear to whom AIDS was given: the country (U.S.) or to the collective American public (us).
100. New York Times, October 7, 1987, B7
101. National Review, November 6, 1987, 19.
102. Toronto Star, October 7, 1987, A2.
103. The bulk of the interview notes are in RS/Band, boxes 1 and 2.
104. A Ross, "Media" (n. 56), 5.
105. RS/Band, box 2, folder 23: Patient Zero, Bob Tivey interview notes, 6-7.
106. Shilts, Band (n. 1), 246-247.
107. RS/Band, box 4, folder: Draft, 30.
108. RS/Band, box 5, folder: Draft (511p), n.d., 317-511 (3 of 3), 456.
109. A Ross, "Media" (n. 56), 5.
110. See, for example, "Proud Lives," Q Magazine, May 1988, 13-17.
111. Anne Steacy and Lisa Van Dusen, "'Patient Zero' and the AIDS Virus," Maclean's, October 19, 1987, 53.
112. Charlotte Bercaw, "Shilts Gets Grip on His Being, Then Worldwide Epidemic," Beacon-News, November 15, 1987, A5+A8.
113. Robert O. Boorstin, "Criminal and Civil Litigation on Spread of AIDS Appears," New York Times, June 19, 1987, A1+A16, quotation on A1.
114. Richard Lacayo, "Assault with a Deadly Virus," Time, July 20, 1987, 57
115. Robert Stein-brook, "The Times Poll: 42% Would Limit Civil Rights in AIDS Battle," Los Angeles Times, July 31, 1987, 1.
116. David L. Kirp, "Politics Is Latest AIDS Sideshow," Lodi News-Sentinel, July 9, 1987, 4, accessed December 4, 2013, www.news.google.com/newspapers?id=BLM0AAAAIBAJ&sjid=YiEGAAAAIBAJ&dq=aids%20kirp&pg=3276%2C926014.
117. Brier, Infectious Ideas (n. 20), 87.
118. Ibid., 92.
119. See also Grover, "AIDS" (n. 14), 28-30.
120. Klenk to Bauer, note with attachment, June 10, 1987, Gary Bauer Files, box OA 19222, folder: AIDS VII (4 of 5), Ronald Reagan Presidential Library, Simi Valley, Calif.
121. [William T. O'Connor,] "The Alarming Reality," report, June 7, 1987, 21, Bauer Files, box OA 19222, folder: AIDS VII (4 of 5). O'Connor was a California physician whose calls for the quarantine of HIV-infected people raised controversy.
122. "Patient Zero: The Man Who Brought the AIDS Epidemic to California," photocopy of October 1987 California magazine cover and article, Bauer Files, box OA 19222, folder: AIDS VII (2 of 5).
123. "Patient Zero," produced by Lowell Bergman, 60 Minutes (CBS, November 15, 1987), accessed December 4, 2013, http://www.cbsnews.com/video/watch/?id=7423144n.
124. Douglas J. Besharov, "AIDS and the Criminal Law: Needed Reform," State Factor 13 (1987): 1-8, quotation on 1.
125. Raymond C. O'Brien, "AIDS: Perspective on the American Family," Villanova Law Rev. 34 (1989): 209-280, quotation on 257.
126. Kathleen M. Sullivan and Martha A. Field, "AIDS and the Coercive Power of the State," Harvard Civil Rights-Civil Liberties Law Rev. 23 (1988): 139-197, quotation on 164.
127. James B. McArthur, "As the Tide Turns: The Changing HIV/AIDS Epidemic and the Criminalization of HIV Exposure," Cornell Law Rev. 94 (2009): 707-741.
128. Transcript, "Hearing on Societal and Legal Issues," Presidential Commission on the Human Immunodeficiency Virus Epidemic, April 5 and 6, 1988, 136, National Commission on Acquired Immune Deficiency Syndrome Records 1983-1994, MS C 544, National Library of Medicine, Bethesda (hereafter NCAIDS Records).
129. Ibid., 137.
130. Testimony of Robert E. Weiss, Presidential Commission on the Human Immuno-deficiency Virus Epidemic, April 6, 1988, 4, NCAIDS Records.
131. Transcript, "Hearing" (n. 102), 253.
132. Presidential Commission on the Human Immunodeficiency Virus Epidemic, "Report of the Presidential Commission on the Human Immunodeficiency Virus Epidemic" (Washington, D.C.: Government Printing Office, 1988), 130.
133. Barry Gaspard [staff assistant to Commissioner Frank Lilly] to Members of the AIDS Consortium, memo [June, 1988], folder 4, box 390, Gay Men's Health Crisis (GMHC) Records, Manuscripts and Archives Division, New York Public Library, Astor, Lenox, and Tilden Foundations.
134. Sullivan and Field, "AIDS" (n. 100), 196.
135. Presidential Commission, "Report" (n. 106), 130.
136. Ronald Bayer, Private Acts, Social Consequences: AIDS and the Politics of Public Health, paperback ed. (New Brunswick, N.J.: Rutgers University Press, 1991), 254.
137. Ryan White CARE Act of 1990, Pub. L. No. 101-381, 104 Stat. 576, accessed December 4, 2013, http://waxman.house.gov/press-release/ryan-white-care-act-1990
138. Raymond C. O'Brien, "A Legislative Initiative: The Ryan White Comprehensive AIDS Resources Emergency Act of 1990," J. Contemp. Health Law Policy 7 (1991): 183-206.
139. White was a young HIV-positive hemophiliac who rose to national prominence when he was subjected to intense discrimination at school based on fears surrounding his disease. He died in 1990.
140. Richard Pearhouse, "Legislation Contagion: The Spread of Problematic New HIV Laws in Africa" (paper, 17th International AIDS Conference, Mexico City, August 6, 2008);
141. Lucy Stackpool-Moore, Verdict on a Virus: Public Health, Human Rights and Criminal Law (London: International Planned Parenthood Federation, 2008), 13, accessed December 5, 2013, http://www.ippf.org/resource/Verdict-Virus-Public-health-human-rights-and-criminal-law.
142. "meeting: June 20, 1983," AIDS Vancouver: Exhibits of the British Columbia Hearings, March 1994-Commission of Inquiry on the Blood System in Canada (Ottawa: The Commission, 1994), vol. 49, tab B20.
143. "meeting: August 2, 1983," AIDS Vancouver (n. 113).
144. Grmek, History of AIDS (n. 9), 19.
145. Martin Luther, "Is It Right to Flee from the Epidemic?," pamphlet quoted in Johannes Nohl, The Black Death: A Chronicle of the Plague, trans. C. H. Clarke (London: Allen & Unwin, 1926), 136-137, quotation on 137.