1. Michael Specter, "Pressure from AIDS Activists has Transformed Drug Testing," Washington Post, 2 July 1989, A-1. [BACK]

2. See Peter S. Arno and Karyn L. Feiden, Against the Odds: The Story of AIDS Drug Development, Politics and Profits (New York: HarperCollins, 1992), chapter 13. [BACK]

3. Anthony S. Fauci, "AIDS—Challenges to Basic and Clinical Biomedical Research," Academic Medicine 64 (March 1989): 117. [BACK]

4. J. Eigo and M. Harrington, "AIDS Drugs and the Politics of Biomedicine" (abstract of presentation at the Fifth International Conference on AIDS), Montreal, 4-9 June 1989; J. Eigo et al., "Drug Regulation Gone Wrong: The Saga of Ganciclovir" (abstract of presentation at the Fifth International Conference on AIDS), Montreal, 4-9 June 1989. [BACK]

5. Arno and Feiden, Against the Odds, 173-174. [BACK]

6. Gina Kolata, "AIDS Researcher Seeks Wide Access to Drugs in Tests," New York Times, 26 June 1989, A-1. [BACK]

7. Ibid. [BACK]

8. On parallel track and the approval of ddI, see Jeffrey Levi, "Unproven AIDS Therapies: The Food and Drug Administration and ddI," in Biomedical Politics, ed. Kathi E. Hanna (Washington, D.C.: National Academy Press, 1991), 9-37. [BACK]

9. Anthony Fauci, interview by author, tape recording, Bethesda, Md., 31 October 1994. [BACK]

10. For a formal expression of the idea, see Samuel Broder, "Controlled Trial Methodology and Progress in Treatment of the Acquired Immunodeficiency Syndrome (AIDS): A Quid Pro Quo," Annals of Internal Medicine 110 (15 March 1989): 417-418. [BACK]

11. Philip J. Hilts, "Drug Said to Help AIDS Cases with Virus but No Symptoms," New York Times, 18 August 1989, A-1. [BACK]

12. Gina Kolata, "Strong Evidence Discovered That AZT Holds Off AIDS," New York Times, 4 August 1989, A-1. [BACK]

13. Hilts, "Drug Said to Help AIDS Cases." [BACK]

14. Paul A. Volberding et al., "Zidovudine in Asymptomatic Human Immunodeficiency Virus Infection," New England Journal of Medicine 322 (5 April 1990): 941-949. [BACK]

15. Paul Volberding, interview by author, tape recording, San Francisco, 7 July 1994. [BACK]

16. Volberding et al., "Zidovudine in Asymptomatic Human Immunodeficiency Virus Infection," 948.

Zidovudine is the name that tends to get used in the medical journals and at conferences. It is a testament to the drug's construction as a "boundary object," existing simultaneously in multiple social worlds, that it bears different names in different places (azidothymidine, AZT, zidovudine, and Retrovir). (On "boundary objects" in science, see Susan Leigh Star and James R. Griesemer, "Institutional Ecology, 'Translations' and Boundary Objects: Amateurs and Professionals in Berkeley's Museum of Vertebrate Zoology, 1907-39," Social Studies of Science 19 [August 1989]: 387-420.) [BACK]

17. Volberding et al., "Zidovudine in Asymptomatic Human Immunodeficiency Virus Infection," 948. [BACK]

18. See Donald I. Abrams, "On the Matter of Survival," BETA, November 1992. [BACK]

19. Gerald H. Friedland, "Early Treatment for HIV: The Time Has Come," New England Journal of Medicine 322 (5 April 1990): 1001 (editorial). [BACK]

20. On the relation between diagnostic conditions and identity in AIDS, see the discussion of "becoming a person with HIV" in Rose Weitz, Life with AIDS (New Brunswick, N.J.: Rutgers Univ. Press, 1991), chapter 4. [BACK]

21. Friedland, "Early Treatment for HIV," 1001. [BACK]

22. "Incorporation of Trial Results into Clinical Practice: Open Discussion," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S145-S147. [BACK]

23. "Recommendations for Zidovudine: Early Infection," Journal of the American Medical Association 263 (23-30 March 1990): 1606, 1609. This is a summary of the "State-of-the-Art Conference on AZT Therapy for Early HIV Infection" sponsored by NIAID, 3-4 March 1990. [BACK]

24. "U.S. Urges Wider Use of AZT for Adults with AIDS Virus," New York Times, 3 March 1990, A-10. [BACK]

25. Neville Hodgkinson, "The Cure That Failed," Sunday Times (London), 4 April 1993, Features section. [BACK]

26. "AZT News: The Final Chapter?" PI Perspectives, November 1989. [BACK]

27. Gina Kolata, "Medical Data: Who Should Hear It First?" New York Times, 22 May 1990, C-1. [BACK]

28. John Lauritsen, "Science by Press Release," New York Native, 21 August 1989, 20-22; Kolata, "Medical Data: Who Should Hear It First?" [BACK]

29. Kolata, "Medical Data: Who Should Hear It First?" [BACK]

30. "An Open Letter to Mayor Koch," New York Native, 21 August 1989, 23. [BACK]

31. John Lauritsen, "First Things First: Some Thoughts on the 'AIDS Virus' and AZT," New York Native, 1 June 1987, 1, 14-16 (cover story). [BACK]

32. John Lauritsen, Poison by Prescription: The AZT Story (New York: Asklepios, 1990), 19. [BACK]

33. Susan Leigh Star, "Scientific Work and Uncertainty," Social Studies of Science 15 (August 1985): 391-427, quote from 392. [BACK]

34. H. M. Collins, "Certainty and the Public Understanding of Science: Science on Television," Social Studies of Science 17 (November 1987): 692. [BACK]

35. Harry Collins, Changing Order: Replication and Induction in Scientific Practice, 2d ed. (Chicago: Univ. of Chicago Press, 1992), 162. [BACK]

36. Gina Kolata, "Recruiting Problems in New York Slowing U.S. Trials of AIDS Drug," New York Times, 18 December 1988, A-1. [BACK]

37. Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin's, 1987), 539-543. [BACK]

38. See Michael Wright, "East West Gulf, Project Inform's Consensus Statement on ddI and ddC and Ellen Cooper Resignation Fallout?" ACT UP/Golden Gate Treatment Issues Report 2, no. 3 (1991). [BACK]

39. Paul Harding Douglas, ed., Improving the Odds: 1988 (New York: Columbia Gay Health Advocacy Project, 1989), 28 (proceedings of conference held at Columbia University, November 19, 1988). For analytical commentary see also Paula A. Treichler, "How to Have Theory in an Epidemic: The Evolution of AIDS Treatment Activism," in Technoculture, ed. Constance Penley and Andrew Ross (Minneapolis and Oxford: Univ. of Minnesota Press, 1991), 83-93. [BACK]

40. "AZT-Resistant Strains of HIV Appear," PI Perspectives, March 1989. [BACK]

41. On obligatory passage points in science, see Bruno Latour, Science in Action (Cambridge, Mass.: Harvard Univ. Press, 1987). For a similar analysis of Delaney's reliance on AZT, see Treichler, "How to Have Theory in an Epidemic," 93. [BACK]

42. "AZT News: The Final Chapter?" [BACK]

43. "Zidovudine for Symptomless HIV Infection," Lancet 335 (7 April 1990): 821-822 (editorial). [BACK]

44. Anthony J. Pinching, "Zidovudine in Asymptomatic HIV Infection: Knowledge and Uncertainty," International Journal of STD & AIDS 2 (May-June 1991): 157-161 (editorial review). [BACK]

45. See Meurig Horton, "Bugs, Drugs and Placebos: The Opulence of Truth, or How to Make a Treatment Decision in an Epidemic," in Taking Liberties: AIDS and Cultural Politics, ed. Erica Carter and Simon Watney (London: Serpent's Tail, 1989), 161-181. [BACK]

46. Jeremy Cherfas, "AZT Still on Trial," Science 246 (17 November 1989): 882. [BACK]

47. Ibid. [BACK]

48. Susan Ellenberg, interview by author, tape recording, Rockville, Md., 25 April 1994. [BACK]

49. Martin Hirsch, interview by author, tape recording, Boston, 25 October 1994. [BACK]

50. Cherfas, "AZT Still on Trial." [BACK]

51. Ellenberg, interview. [BACK]

52. David Byar, "Design Considerations for AIDS Trials," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S16-S19. [BACK]

53. See William Francis Patrick Crowley III, Gaining Access: The Politics of AIDS Clinical Drug Trials in Boston (undergraduate thesis, Harvard College, 1991), 40. [BACK]

54. Rebecca Smith, "AIDS Drug Trials," Science 246 (22 December 1989): 1547 (letter to the editor). [BACK]

55. From the public forum "Clinical Trials," Davies Hospital, San Francisco, 6 October 1990 (author's field notes). [BACK]

56. David Byar, quoted in Joseph Palca, "AIDS Drug Trials Enter New Age," Science 246 (6 October 1989): 20. For other criticisms of researchers' assumptions, see, for example, Byar, "Design Considerations for AIDS Trials." For an example of the role of biostatisticians in rethinking AIDS trials in the Boston area, see also Crowley, Gaining Access, 51. [BACK]

57. Rebecca Smith, interview by author, tape recording, Providence, R.I., 26 October 1994. [BACK]

59. Susan S. Ellenberg et al., "Studying Treatments for AIDS: New Challenges for Clinical Trials—A Panel Discussion at the 1990 Annual Meeting of the Society for Clinical Trials," Controlled Clinical Trials 13 (August 1992): 272-292. [BACK]

60. Douglas Richman, interview by author, tape recording, San Diego, 1 June 1994. [BACK]

61. Smith, interview. [BACK]

62. Fauci, interview. On "situated knowledges," see Donna J. Haraway, Simians, Cyborgs, and Women: The Reinvention of Nature (New York: Routledge, 1991), chapter 9. [BACK]

63. Smith, interview. [BACK]

64. Deciding to Enter an AIDS/HIV Drug Trial (New York: AIDS Treatment Registry, 1989). [BACK]

65. Ellenberg, interview; Mark Harrington, interview by author, tape recording, New York City, 29 April 1994. [BACK]

66. David Byar, "Design Options for AIDS Trials" (paper presented at the annual conference of the American Academy for the Advancement of Science, Washington, D.C., 17 February 1991), tape recorded proceedings. [BACK]

67. D. Bruce Burlington, "Statutory and Regulatory Framework for Drug Approval," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S4-S9. [BACK]

68. Jim Eigo, "How AIDS Will Change the Way We Test Drugs" (paper presented at the annual conference of the American Academy for the Advancement of Science, Washington, D.C., 17 February 1991), tape recorded proceedings. [BACK]

69. Douglas Richman et al., "Design of Clinical Trials—Active Control (Equivalence) Trials," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S88-S91. This issue of the journal contains the transcript of the conference, which was held in the Washington, D.C., area in November 1989. [BACK]

70. Paul Lietman et al., "Design of Clinical Trials—Approaches to Clinical Trials Design: Discussion," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S27-S36. [BACK]

71. Paul A. Volberding, "Rationale for Variations in Clinical Trial Design in Different HIV Disease Stages," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S40-S44. [BACK]

72. Donald Abrams, interview by author, tape recording, San Francisco, 16 December 1993. [BACK]

73. Michelle Roland, interview by author, tape recording, Davis, Calif., 18 December 1993. [BACK]

74. On this point, see also Crowley, Gaining Access. [BACK]

75. Lietman et al., "Design of Clinical Trials—Approaches to Clinical Trial Design," S31. [BACK]

76. Quoted in Tim Kingston, "Justice Gone Blind: CMV Patients Fight for Their Sight," Coming Up! February 1989, 4. Sutton died of AIDS-related causes on April 11, 1989. [BACK]

77. "Alternative Approaches to Clinical Trials"; Smith, interview. [BACK]

78. See Palca, "AIDS Drug Trials Enter New Age," S20. [BACK]

79. Byar, "Design Considerations for AIDS Trials," S18. [BACK]

80. Alvan R. Feinstein, "An Additional Basic Science for Clinical Medicine: II. The Limitations of Randomized Trials," Annals of Internal Medicine 99 (October 1983): 545. [BACK]

81. Harry Milton Marks, "Ideas as Reforms: Therapeutic Experiments and Medical Practice, 1900-1980" (Ph.D. diss., Massachusetts Institute of Technology, 1987). [BACK]

82. Robert J. Levine, Ethics and Regulation of Clinical Research (Baltimore: Urban & Schwarzenberg, 1986), 208; "Scientific Justification for Community-Based Trials," AIDS Treatment News, 23 September 1988. [BACK]

83. Volberding, "Rationale for Variations in Clinical Trial Design," S41. [BACK]

84. See Steven Shapin, "Cordelia's Love: Credibility and the Social Studies of Studies," Perspectives on Science 3, no. 3 (1995): 255-275, esp. 261-266. [BACK]

85. Ellenberg, interview. [BACK]

86. I am grateful to Evelleen Richards for discussion of similarities and differences between AIDS trials and cancer trials. [BACK]

87. Eliot Marshall, "Quick Release of AIDS Drugs," Science 245 (28 July 1989): 345-347, quote from 345. [BACK]

88. John S. James, "The Drug-Trials Debacle—And What to Do about It (Part I)," AIDS Treatment News, 21 April 1989. [BACK]

89. "AIDS Treatment Research and Care Issues: The Need for Advocacy," AIDS Treatment News, 26 February 1988. [BACK]

90. Cf. Pierre Bourdieu, "The Specificity of the Scientific Field and the Social Conditions of the Progress of Reason," Social Science Information 14 (December 1975): 19-47. [BACK]

91. On the cultural significance of metaphors of purity and contamination, see Mary Douglas, Purity and Danger (New York: Routledge & Kegan Paul, 1979). On the "sacred" character of "pure science," see Sal Restivo, "The Social Roots of Pure Mathematics," in Theories of Science in Society, ed. Susan E. Cozzens and Thomas F. Gieryn (Bloomington: Indiana Univ. Press, 1990), 120-143. [BACK]

92. Roland, interview. [BACK]

93. See Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992). [BACK]

94. From the session "Clinical Trials and Drug Development" at the VI International Conference on AIDS, San Francisco, 22 June 1990 (author's field notes). [BACK]

95. Scott Brookie, "Unofficial Compound Q Trial Continues," Gay Community News, 30 July 1989, 3. [BACK]

96. "Clinical Trials and Drug Development." [BACK]

97. From the public forum "Community Outreach Session," held in conjunction with the VI International AIDS Conference, San Francisco, 22 June 1990 (author's field notes). [BACK]

98. Robert Steinbrook, "AIDS Trials Shortchange Minorities and Drug Users," Los Angeles Times, 25 September 1989, 1. [BACK]

99. J.E. D'Eramo et al., "Women and Minorities Have Less Access to AIDS Drug Trials" (abstract of presentation at the VII International Conference on AIDS, Florence, 16-21 June 1991). [BACK]

100. Gina Kolata, "AIDS Research on New Drugs Bypasses Addicts and Women," New York Times, 5 January 1988, C-1. [BACK]

101. Donald E. Craven et al., "AIDS in Intravenous Drug Users: Issues Related to Enrollment in Clinical Trials," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S48. [BACK]

102. Quoted in Stephen B. Thomas and Sandra Crouse Quinn, "The Tuskegee Syphilis Study, 1932 to 1972: Implications for HIV Education and AIDS Risk Education Programs in the Black Community," American Journal of Public Health 81 (November 1991): 1498-1505. [BACK]

103. The survey was reported in the editorial "The AIDS 'Plot' against Blacks," New York Times, 12 May 1992, A-22. [BACK]

104. The delay was due, in part, to Burroughs Wellcome's slowness in filing with the FDA; see Gina Kolata, "Hundreds of Children with AIDS Are Unable to Obtain AZT," New York Times, 23 September 1989, A-8. [BACK]

105. Lisa Auer, "Developing a Clinical Research Agenda for Women," PI Perspectives, 9 October 1990. [BACK]

106. Gina Kolata, "N.I.H. Neglects Women, Study Says," New York Times, 19 June 1990, C-6. [BACK]

107. Scott Jaschik, "Report Says NIH Ignores Own Rules on Including Women in Its Research," Chronicle of Higher Education, 27 June 1990, A27. [BACK]

108. Paul Cotton, "Examples Abound of Gaps in Medical Knowledge Because of Groups Excluded from Scientific Study," Journal of the American Medical Association 263 (23 February 1990): 1051, 1055. [BACK]

109. Fauci, interview. [BACK]

110. On recent trends toward the understanding of racial differences in genetic and biological terms, see Troy Duster, Backdoor to Eugenics (New York and London: Routledge, 1990). [BACK]

111. Malcolm Gladwell, "AIDS Study Suggests Drug May Have Racial Limits," Washington Post, 15 February 1991, A-4. [BACK]

112. Gina Kolata, "Federal Study Questions Ability of AZT to Delay AIDS," New York Times, 15 February 1991, A-1; see also Gina Kolata, "In Medical Research Equal Opportunity Doesn't Always Apply," New York Times, 10 March 1991, 16 (Section 4). [BACK]

113. Quoted in Paul Rykoff Coleman, "AZT Efficacy Study Angers Blacks and Latinos," Outweek, 6 March 1991, 28, 29, 102. For more on the issue of AZT's efficacy in different racial groups, see Gina Kolata, "AIDS Drug Unaffected by Race or Sex," New York Times, 20 November 1991, A-25. [BACK]

114. Paul Cotton, "Is There Still Too Much Extrapolation from Data on Middle-Aged White Men?" Journal of the American Medical Association 263 (23 February 1990): 1049-1050. [BACK]

115. "Incorporation of Trial Results into Clinical Practice," S146. [BACK]

116. David P. Byar et al., "Sounding Board: Design Considerations for AIDS Trials," New England Journal of Medicine 323 (8 November 1990): 1343-1347. [BACK]

117. Thomas C. Merigan, "Sounding Board: You Can Teach an Old Dog New Tricks: How AIDS Trials Are Pioneering New Strategies," New England Journal of Medicine 323 (8 November 1990): 1341-1343. [BACK]

118. Carol Levine, Nancy Neveloff Dubler, and Robert J. Levine, "Building a New Consensus: Ethical Principles and Policies for Clinical Research on HIV/AIDS," AIDS Patient Care, April 1992, 67-85. [BACK]

119. Robert J. Levine, "Community Consultation in Clinical Trials" (paper presented at the annual conference of the American Academy for the Advancement of Science, Washington, D.C., 17 February 1991), tape recorded proceedings. [BACK]

120. Byar, "Design Options for AIDS Trials." [BACK]

121. Eigo, "How AIDS Will Change the Way We Test Drugs." [BACK]