1. Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin's, 1987), 451. [BACK]

2. Philip M. Boffey, "A Likely AIDS Cause, but Still No Cure," New York Times, 29 April 1984, sec. 4, p. 22. [BACK]

3. Margaret I. Johnston and Daniel F. Hoth, "Present Status and Future Prospects for HIV Therapies," Science 260 (28 May 1993): 1286-1293. [BACK]

4. See John M. Coffin, "Introduction to Retroviruses," in AIDS and OtherManifestations of HIV Infection, 2d ed., ed. Gary P. Wormser (New York: Raven Press, 1992), 37-56. [BACK]

5. For an example of an argument linking this conception of pathogenesis with the search for a reverse transcriptase inhibitor, see Dani P. Bolognesi and Peter J. Fischinger, "Prospects for Treatment of Human Retrovirus-Associated Diseases," Cancer Research 45, Suppl. (September 1985): 4700s-4705s. [BACK]

6. H. Mitsuya et al., "Suramin Protection of T Cells in Vitro Against Infectivity and Cytopathic Effect of HTLV-III," Science 226 (12 October 1984): 172-174. [BACK]

7. W. Rozenbaum et al., "Antimoniotungstate (HPA 23) Treatment of Three Patients with AIDS and One with Prodrome," Lancet, 23 February 1985, 450-451. [BACK]

8. Ibid., 450. [BACK]

9. Matt Clark and Vincent Coppola, "AIDS: A Growing 'Pandemic'?" Newsweek, 29 April 1985, 71. [BACK]

10. Lawrence K. Altman, "The Doctor's World: AIDS Data Pour In, Studies Proliferate," New York Times, 23 April 1985, C-3. [BACK]

11. The following history of drug regulation in the United States draws from Harry Milton Marks, "Ideas as Reforms: Therapeutic Experiments and Medical Practice, 1900-1980" (Ph.D. diss., Massachusetts Institute of Technology, 1987); and Albert R. Jonsen and Jeff Stryker, eds., The Social Impact of AIDS in the United States (Washington, D.C.: National Academy Press, 1993), 84-87. [BACK]

12. Marks has refuted the commonly told story that, before Kefauver-Harris, the FDA never looked at efficacy; see "Ideas as Reforms," 53. Ironically, thalidomide has recently resurfaced, as a potential AIDS drug. [BACK]

13. Marks, "Ideas as Reforms," 85-86. [BACK]

14. Harold M. Schmeck Jr., "Scientists Say Genes in AIDS May Hamper Vaccine Work," New York Times, 11 October 1984, A-24. [BACK]

15. Altman, "Doctor's World: AIDS Data Pour In." [BACK]

16. "International Conference," BAPHRON 7 (May-June 1985): 306. [BACK]

17. William F. Buckley Jr., "Steps in Combating the AIDS Epidemic," New York Times, 18 March 1985 (op-ed). [BACK]

18. Cindy Patton has criticized the common tendency to imagine that AIDS activism originated with the birth of ACT UP in 1987; see Inventing AIDS (New York: Routledge, 1990), 19. [BACK]

19. Michael Specter, "The New Politics of AIDS," Washington Post Weekly, 19 August 1985, 9. [BACK]

20. See Jackie Winnow, "Lesbians Evolving Health Care: Cancer and AIDS," Feminist Review, summer 1992, 68-77; Gena Corea, The Invisible Epidemic: The Story of Women and AIDS (New York: HarperCollins, 1992); Amber Hollibaugh, "Lesbian Denial and Lesbian Leadership in the AIDS Epidemic: Bravery and Fear in the Construction of a Lesbian Geography of Risk," in Women Resisting AIDS: Feminist Strategies of Empowerment, ed. Beth E. Schneider and Nancy E. Stoller (Philadelphia: Temple Univ. Press, 1995), 219-230; Nancy Stoller, "Lesbian Involvement in the AIDS Epidemic: Changing Roles and Generational Differences," in Women Resisting AIDS (above), 270-285. [BACK]

21. Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992), 20-73. [BACK]

22. Mark Clark et al., "AIDS Exiles in Paris," Newsweek, 5 August 1985, 71. [BACK]

23. Irvin Molotsky, "French AIDS Drug Due for U.S. Tests," New York Times, 31 July 1985, A-10. [BACK]

24. Lawrence K. Altman, "The Doctor's World: Search for an AIDS Drug Is Case History in Frustration," New York Times, 30 July 1985, C-1. [BACK]

25. Kwitny, Acceptable Risks, 49-50, 82-83. [BACK]

26. Ibid., 29-31. [BACK]

27. See, for example, Robert J. Levine, Ethics and Regulation of Clinical Research (Baltimore: Urban & Schwarzenberg, 1986). [BACK]

28. Jonsen and Stryker, Social Impact of AIDS, 81. [BACK]

29. David J. Rothman, Strangers at the Bedside (New York: Basic Books, 1991), 15-18, 70-84. [BACK]

30. James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York: Free Press, 1981). [BACK]

31. Jonsen and Stryker, Social Impact of AIDS, 87-88. [BACK]

32. David J. Rothman and Harold Edgar, "AIDS, Activism, and Ethics," Hospital Practice 26 (15 July 1991): 135-142, quote from 136. [BACK]

33. Robert Yarchoan et al., "Implications of the Discovery of HTLV-III for the Treatment of AIDS," Cancer Research 45, Suppl. (September 1985): 4685s-4688s. [BACK]

34. Samuel Broder et al., "Effects of Suramin on HTLV-III/LAV Infection Presenting as Kaposi's Sarcoma or AIDS-Related Complex: Clinical Pharmacology and Suppression of Virus Replication in Vivo," Lancet, 21 September 1985, 627-630. [BACK]

35. Bruce Nussbaum, Good Intentions: How Big Business and the Medical Establishment Are Corrupting the Fight against AIDS (New York: Atlantic Monthly Press, 1990), 23. [BACK]

36. See Kwitny, Acceptable Risks, 84-93 and the accompanying endnotes. [BACK]

37. Paul Volberding and Donald Abrams, quoted in Kwitny, Acceptable Risks, 437. [BACK]

38. Barry Adkins, "Looking at AIDS in Totality: A Conversation with Joseph Sonnabend," New York Native, 7 October 1985, 21-25. [BACK]

39. See the account in Nussbaum, Good Intentions, chapter 1. [BACK]

40. "A Failure Led to Drug against AIDS," New York Times, 20 September 1986, A-7. [BACK]

41. "New Drug Shows Gain in Fight against AIDS," New York Times, 26 January 1986, A-17. [BACK]

42. Robert Yarchoan et al., "Administration of 3&0374;-Azido-3&0374;-Deoxythymidine, an Inhibitor of HTLV-III/LAV Replication, to Patients with AIDS or AIDS-Related Complex," Lancet, 15 March 1986, 575-580. [BACK]

43. Jean L. Marx, "AIDS Drug Shows Promise in Preliminary Clinical Trial," Science 231 (28 March 1986): 1504-1505. [BACK]

44. Yarchoan et al., "Administration of 3&0374;-Azido-3&0374;-Deoxythymidine," 580. [BACK]

45. John S. James, "What's Wrong with AIDS Treatment Research?" AIDS Treatment News, 9 May 1986. [BACK]

46. John James, interview by author, tape recording, San Francisco, 10 December 1993; Peter S. Arno and Karyn L. Feiden, Against the Odds: The Story of AIDS Drug Development, Politics and Profits (New York: HarperCollins, 1992), 64; Katherine Bishop, "Underground Press Leads Way on AIDS Advice," New York Times, 16 December 1991, A-16. [BACK]

47. This figure is given by John James in "A Wish List, Some Problems, and Recommendations: Testimony of John S. James before the Presidential Commission on the HIV Epidemic, New York City, New York, February 20, 1988," AIDS Treatment News, 26 February 1988. [BACK]

48. Debbie Indyk and David Rier, "Grassroots AIDS Knowledge: Implications for the Boundaries of Science and Collective Action," Knowledge: Creation, Diffusion, Utilization 15 (September 1993): 3-43, quote from 9. [BACK]

49. James, "What's Wrong with AIDS Treatment Research?" [BACK]

50. John S. James, "AIDS Conspiracy—Just a Theory?" AIDS Treatment News (September 1986). [BACK]

51. Erik Eckholm, "$100 Million for AIDS Drug Testing," New York Times, 1 July 1986, C-3. [BACK]

52. Nussbaum, Good Intentions, 127-130. [BACK]

53. See Marks, "Ideas as Reforms"; Theodore M. Porter, Trust in Numbers: The Pursuit of Objectivity in Science and Public Life (Princeton, N.J.: Princeton Univ. Press, 1995), 203-216; and the citations I provide in note 147 of the introduction. [BACK]

54. Marks, "Ideas as Reforms," 173, 239, 242. [BACK]

55. This estimate was offered by Dr. Curtis Meinert, editor of the specialty journal Controlled Clinical Trials, in Philip M. Boffey, "Thousands in U.S. Receive Treatments in Experiments," New York Times, 7 January 1986, C-1. [BACK]

56. Boffey, "Thousands in U.S. Receive Treatments." [BACK]

57. Ibid. [BACK]

58. See Susan Ellenberg et al., "The Use of External Monitoring Committees in Clinical Trials of the National Institute of Allergy and Infectious Diseases," Statistics in Medicine 12 (March 1993): 461-467. [BACK]

59. Erik Eckholm, "AIDS Drug Prolongs Lives in Some Cases," New York Times, 20 September 1986, A-1. [BACK]

60. Deborah M. Barnes, "Promising Results Halt Trial of Anti-AIDS Drug," Science 234 (3 October 1986): 15-16. [BACK]

61. Margaret A. Fischl et al., "The Efficacy of Azidothymidine (AZT) in the Treatment of Patients with AIDS and AIDS-Related Complex," New England Journal of Medicine 317 (23 July 1987): 185-191. [BACK]

62. Douglas D. Richman et al., "The Toxicity of Azidothymidine (AZT) in the Treatment of Patients with AIDS and AIDS-Related Complex," New England Journal of Medicine 317 (23 July 1987): 192-197. [BACK]

63. Erik Eckholm, "Test Group for AIDS Drug Is Broadened to Include 7,000," New York Times, 1 October 1986, B-6. [BACK]

64. Irvin Molotsky, "U.S. Approves Drug to Prolong Lives of AIDS Patients," New York Times, 21 March 1987, A-1. [BACK]

65. Barnaby J. Feder, "Drug Expected to Spur Growth and Profit of Its Maker," New York Times, 21 March 1987, A-32. [BACK]

66. Gina Kolata, "Imminent Marketing of AZT Raises Problems," Science 235 (20 March 1987): 1462-1463 ("Research News"). [BACK]

68. Itzak Brook, "Approval of Zidovudine (AZT) for Acquired Immunodeficiency Syndrome," Journal of the American Medical Association 258 (18 September 1987): 1517 (commentary). [BACK]

69. Bowen, "Fateful Decisions on Treating AIDS." [BACK]

70. Philip J. Hilts, "Results of AIDS Drug Test Raising Ethical Questions," Washington Post, 14 September 1986, A-1. [BACK]

71. Bowen, "Fateful Decisions on Treating AIDS." [BACK]

72. Benjamin Freedman, "Equipoise and the Ethics of Clinical Research," New England Journal of Medicine 317 (16 July 1987): 141-145. [BACK]

73. Jonsen and Stryker, Social Impact of AIDS, 83-84. [BACK]

74. See François Blanchard and Ruth Murbach, "AIDS and Clinical Research: Ethical Controversy and Equipoise" (paper presented at the annual meeting of the Society for Social Studies of Science, Minneapolis, 19 October, 1990). [BACK]

75. Robert M. Veatch, The Patient as Partner: A Theory of Human-Experimentation Ethics (Bloomington: Indiana Univ. Press, 1987), 7, 211. [BACK]

76. Dominique Lapierre, Beyond Love (New York: Warner Books, 1991), 369. [BACK]

77. From a conference presentation published as: Douglas D. Richman, "Public Access to Experimental Drug Therapy: AIDS Raises Yet Another Conflict between Freedom of the Individual and Welfare of the Individual and Public," Journal of Infectious Diseases 159 (March 1989): 412-415. [BACK]

78. Ibid. [BACK]

79. See Ruth Macklin and Gerald Friedland, "AIDS Research: The Ethics of Clinical Trials," Law, Medicine & Health Care 14 (December 1986): 273-280; David J. Rothman and Harold Edgar, "Scientific Rigor and Medical Realities: Placebo Trials in Cancer and AIDS Research," in AIDS: The Making of a Chronic Disease, ed. Elizabeth Fee and Daniel M. Fox (Berkeley: Univ. of California Press, 1992), 194-206. [BACK]

80. These anecdotes are reported in Lapierre, Beyond Love, 366-367. [BACK]

81. See Gary B. Melton et al., "Community Consultation in Socially Sensitive Research: Lessons from Clinical Trials of Treatments for AIDS," American Psychologist 43 (July 1988): 573-581, esp. 574. [BACK]

82. Harry Collins has emphasized that perceptions of certainty in science typically depend on one's "distance from the research front": the closer one gets to the center, the messier things appear (H. M. Collins, "Certainty and the Public Understanding of Science: Science on Television," Social Studies of Science 17 [1987]: 692). [BACK]

83. Ivan Emke, "Medical Authority and Its Discontents: The Case of Organized Non-Compliance," Critical Sociology 19 (Fall 1993): 57-80. [BACK]

84. Norman Fineman, "The Social Construction of Noncompliance: A Study of Health Care and Social Service Providers in Everyday Practice," Sociology of Health & Illness 13 (September 1991): 354-374. [BACK]

85. Emke, "Questioning Medical Authority." [BACK]

86. Eliot Freidson, "The Impurity of Professional Authority," in Institutions and the Person, ed. Howard S. Becker, Blanche Geer, et al. (Chicago: Aldine, 1968), 25-34, esp. 29-30. [BACK]

87. On models of the doctor-patient relationship, see Thomas S. Szasz and Marc H. Hollender, "A Contribution to the Philosophy of Medicine: The Basic Models of the Doctor-Patient Relationship," Archives of Internal Medicine 97 (May 1956): 585-592. On the transformation of the patient into a surgical "object," see Stefan Hirschauer, "The Manufacture of Bodies in Surgery," Social Studies of Science 21 (May 1991): 279-319. [BACK]

88. Indyk and Rier, "Grassroots AIDS Knowledge," 6. [BACK]

89. PWA Coalition, "Founding Statement of People with AIDS/ARC," in AIDS: Cultural Analysis, Cultural Activism, ed. Douglas Crimp (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1988), 148-149. [BACK]

90. PWA Coalition, "A Patient's Bill of Rights," in AIDS: Cultural Analysis, Cultural Activism, ed. Douglas Crimp (Cambridge, Mass.: Massachusetts Institute of Technology Press, 1988), 160. [BACK]

91. Tim Kingston, "The AIDS Industry vs. the Healing Workers," Coming Up! April 1988, 10-13. The anthropologist cited was Ronald Frankenberg of the University of Keele in England. [BACK]

92. Michelle Roland, "Managing Your Doctor," AIDS Treatment News, 21 September 1990, 4. [BACK]

93. John D. Arras, "Noncompliance in AIDS Research," Hastings Center Report, September-October 1990, 24-32. [BACK]

94. Barrie R. Cassileth and Helene Brown, "Unorthodox Cancer Medicine," Ca—A Cancer Journal for Clinicians 38 (May-June 1988): 176-186. [BACK]

95. Paul Monette, Borrowed Time: An AIDS Memoir (San Diego: Harcourt Brace Jovanovich, 1987), 92. [BACK]

96. Lapierre, Beyond Love, 214. [BACK]

97. Charles L. Bosk and Joel E. Frader, "AIDS and Its Impact on Medical Work: The Culture and Politics of the Shop Floor," Milbank Quarterly 68, suppl. 2 (1990): 257-279, esp. 271. [BACK]