Chapter 5 Points of Departure
1. Randy Shilts, And the Band Played On: Politics, People, and the AIDS Epidemic (New York: St. Martin's, 1987), 451.
2. Philip M. Boffey, "A Likely AIDS Cause, but Still No Cure," New York Times, 29 April 1984, sec. 4, p. 22.
3. Margaret I. Johnston and Daniel F. Hoth, "Present Status and Future Prospects for HIV Therapies," Science 260 (28 May 1993): 1286-1293.
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.
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.
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.
7. W. Rozenbaum et al., "Antimoniotungstate (HPA 23) Treatment of Three Patients with AIDS and One with Prodrome," Lancet, 23 February 1985, 450-451.
8. Ibid., 450.
9. Matt Clark and Vincent Coppola, "AIDS: A Growing 'Pandemic'?" Newsweek, 29 April 1985, 71.
10. Lawrence K. Altman, "The Doctor's World: AIDS Data Pour In, Studies Proliferate," New York Times, 23 April 1985, C-3.
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.
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.
13. Marks, "Ideas as Reforms," 85-86.
14. Harold M. Schmeck Jr., "Scientists Say Genes in AIDS May Hamper Vaccine Work," New York Times, 11 October 1984, A-24.
15. Altman, "Doctor's World: AIDS Data Pour In."
16. "International Conference," BAPHRON 7 (May-June 1985): 306.
17. William F. Buckley Jr., "Steps in Combating the AIDS Epidemic," New York Times, 18 March 1985 (op-ed).
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.
19. Michael Specter, "The New Politics of AIDS," Washington Post Weekly, 19 August 1985, 9.
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.
21. Jonathan Kwitny, Acceptable Risks (New York: Poseidon Press, 1992), 20-73.
22. Mark Clark et al., "AIDS Exiles in Paris," Newsweek, 5 August 1985, 71.
23. Irvin Molotsky, "French AIDS Drug Due for U.S. Tests," New York Times, 31 July 1985, A-10.
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.
25. Kwitny, Acceptable Risks, 49-50, 82-83.
26. Ibid., 29-31.
27. See, for example, Robert J. Levine, Ethics and Regulation of Clinical Research (Baltimore: Urban & Schwarzenberg, 1986).
28. Jonsen and Stryker, Social Impact of AIDS, 81.
29. David J. Rothman, Strangers at the Bedside (New York: Basic Books, 1991), 15-18, 70-84.
30. James H. Jones, Bad Blood: The Tuskegee Syphilis Experiment (New York: Free Press, 1981).
31. Jonsen and Stryker, Social Impact of AIDS, 87-88.
32. David J. Rothman and Harold Edgar, "AIDS, Activism, and Ethics," Hospital Practice 26 (15 July 1991): 135-142, quote from 136.
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.
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.
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.
36. See Kwitny, Acceptable Risks, 84-93 and the accompanying endnotes.
37. Paul Volberding and Donald Abrams, quoted in Kwitny, Acceptable Risks, 437.
38. Barry Adkins, "Looking at AIDS in Totality: A Conversation with Joseph Sonnabend," New York Native, 7 October 1985, 21-25.
39. See the account in Nussbaum, Good Intentions, chapter 1.
40. "A Failure Led to Drug against AIDS," New York Times, 20 September 1986, A-7.
41. "New Drug Shows Gain in Fight against AIDS," New York Times, 26 January 1986, A-17.
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.
43. Jean L. Marx, "AIDS Drug Shows Promise in Preliminary Clinical Trial," Science 231 (28 March 1986): 1504-1505.
44. Yarchoan et al., "Administration of 3&0374;-Azido-3&0374;-Deoxythymidine," 580.
45. John S. James, "What's Wrong with AIDS Treatment Research?" AIDS Treatment News, 9 May 1986.
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.
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.
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.
49. James, "What's Wrong with AIDS Treatment Research?"
50. John S. James, "AIDS Conspiracy—Just a Theory?" AIDS Treatment News (September 1986).
51. Erik Eckholm, "$100 Million for AIDS Drug Testing," New York Times, 1 July 1986, C-3.
52. Nussbaum, Good Intentions, 127-130.
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.
54. Marks, "Ideas as Reforms," 173, 239, 242.
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.
56. Boffey, "Thousands in U.S. Receive Treatments."
57. Ibid.
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.
59. Erik Eckholm, "AIDS Drug Prolongs Lives in Some Cases," New York Times, 20 September 1986, A-1.
60. Deborah M. Barnes, "Promising Results Halt Trial of Anti-AIDS Drug," Science 234 (3 October 1986): 15-16.
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.
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.
63. Erik Eckholm, "Test Group for AIDS Drug Is Broadened to Include 7,000," New York Times, 1 October 1986, B-6.
64. Irvin Molotsky, "U.S. Approves Drug to Prolong Lives of AIDS Patients," New York Times, 21 March 1987, A-1.
65. Barnaby J. Feder, "Drug Expected to Spur Growth and Profit of Its Maker," New York Times, 21 March 1987, A-32.
66. Gina Kolata, "Imminent Marketing of AZT Raises Problems," Science 235 (20 March 1987): 1462-1463 ("Research News").
67. Ezra Bowen, "Fateful Decisions on Treating AIDS," Time, 2 February 1987, 62.
68. Itzak Brook, "Approval of Zidovudine (AZT) for Acquired Immunodeficiency Syndrome," Journal of the American Medical Association 258 (18 September 1987): 1517 (commentary).
69. Bowen, "Fateful Decisions on Treating AIDS."
70. Philip J. Hilts, "Results of AIDS Drug Test Raising Ethical Questions," Washington Post, 14 September 1986, A-1.
71. Bowen, "Fateful Decisions on Treating AIDS."
72. Benjamin Freedman, "Equipoise and the Ethics of Clinical Research," New England Journal of Medicine 317 (16 July 1987): 141-145.
73. Jonsen and Stryker, Social Impact of AIDS, 83-84.
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).
75. Robert M. Veatch, The Patient as Partner: A Theory of Human-Experimentation Ethics (Bloomington: Indiana Univ. Press, 1987), 7, 211.
76. Dominique Lapierre, Beyond Love (New York: Warner Books, 1991), 369.
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.
78. Ibid.
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.
80. These anecdotes are reported in Lapierre, Beyond Love, 366-367.
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.
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).
83. Ivan Emke, "Medical Authority and Its Discontents: The Case of Organized Non-Compliance," Critical Sociology 19 (Fall 1993): 57-80.
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.
85. Emke, "Questioning Medical Authority."
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.
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.
88. Indyk and Rier, "Grassroots AIDS Knowledge," 6.
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.
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.
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.
92. Michelle Roland, "Managing Your Doctor," AIDS Treatment News, 21 September 1990, 4.
93. John D. Arras, "Noncompliance in AIDS Research," Hastings Center Report, September-October 1990, 24-32.
94. Barrie R. Cassileth and Helene Brown, "Unorthodox Cancer Medicine," Ca—A Cancer Journal for Clinicians 38 (May-June 1988): 176-186.
95. Paul Monette, Borrowed Time: An AIDS Memoir (San Diego: Harcourt Brace Jovanovich, 1987), 92.
96. Lapierre, Beyond Love, 214.
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.