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Chapter 6 "Drugs Into Bodies"

1. Robert C. Gallo et al., "HTLV-III/LAV and the Origin and Pathogenesis of AIDS," International Archives of Allergy and Applied Immunology 82 (March-April 1987): 471-475. [BACK]

2. Gina Kolata, "The Evolving Biology of AIDS: Scavenger Cell Looms Large," New York Times, 7 June 1988, C-1. [BACK]

3. See Wendy K. Mariner and Robert C. Gallo, "Getting to Market: The Scientific and Legal Climate for Developing an AIDS Vaccine," Law, Medicine& Health Care 15 (summer 1987): 17-26; Jay A. Levy, "Can an AIDS Vaccine Be Developed?" Transfusion Medicine Reviews 2 (December 1988): 264-271. [BACK]

4. Lawrence K. Altman, "The Doctor's World: Who Will Volunteer for an AIDS Vaccine?" New York Times, 15 April 1986, C-1. The official was not identified. [BACK]

5. Ibid. From a statistical standpoint, the only solution is to do a larger trial or have it run for a longer period of time, so as to generate more "events" of HIV infection—or simply to assume that AIDS education is never going to be entirely effective in preventing new infections. [BACK]

6. Philip M. Boffey, "Experts Find Lag on Testing Drugs in AIDS Patients," New York Times, 12 April 1987, A-1. [BACK]

7. Ibid. [BACK]

8. Bruce Nussbaum, Good Intentions: How Big Business and the Medical Establishment Are Corrupting the Fight against AIDS (New York: Atlantic Monthly Press, 1990), 143 ff. [BACK]

9. Daniel Hoth, interview by author, tape recording, Foster City, Calif., 11 July and 19 October, 1994. [BACK]

10. Ibid. [BACK]

11. Philip M. Boffey, "Campaign to Find Drugs for Fighting AIDS Is Intensified," New York Times, 14 February 1988, A-1. [BACK]

12. Ibid. [BACK]

13. Dick Thompson, "A Decoy for the Deadly AIDS Virus: Human Tests Begin for a New Genetically Engineered Drug," Time, 22 August 1988, 69. [BACK]

14. Ellen Cooper, interview by author, tape recording, Rockville, Md., 25 April 1994. [BACK]

15. Gina Kolata, "Doctors Stretch Rules on AIDS Drug," New York Times, 21 December 1987, A-1. [BACK]

16. Mathilde Krim, "Making Experimental Drugs Available for AIDS Treatment," AIDS & Public Policy 2 (spring-summer 1987): 1-5. [BACK]

17. Tim Kingston, "Death by Placebo: The Sacrificial Lambs of Protocol 019," Coming Up! September 1988, 10-11. [BACK]

18. Thomas C. Chalmers, "The Need for Early Randomization in the Development of New Drugs for AIDS," Journal of Acquired Immune Deficiency Syndromes 3, suppl. 2 (1990): S11. [BACK]

19. Kingston, "Death by Placebo," 10. [BACK]

20. Robert J. Levine, "Clinical Trials and Physicians as Double Agents," Yale Journal of Biology and Medicine 65 (March-April 1992): 65-74. [BACK]

21. 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, quote from 205. [BACK]

22. Andrew Abbott, The System of Professions: An Essay on the Division of Expert Labor (Chicago: Univ. of Chicago Press, 1988), 188 ff; Andrew Abbott, "Status and Status Strain in the Professions," American Journal of Sociology 86 (January 1981): 819-835. [BACK]

23. See Mary-Rose Mueller, "Science in the Community: The Redistribution of Medical Authority in Federally Sponsored Treatment Research for AIDS" (Ph.D. diss., University of California at San Diego, 1995). [BACK]

24. John S. James, "Treatment Research Ideas for Community-Based Trials," AIDS Treatment News, 7 October 1988. [BACK]

25. Mueller, "Science in the Community," quote from 276n. [BACK]

26. Bruno Latour, "Give Me a Laboratory and I Will Raise the World," in Science Observed: Perspectives on the Social Study of Science, ed. Karin D. Knorr-Cetina and Michael Mulkay (London: Sage, 1983), 141-170. [BACK]

27. John S. James, "Community Research Alliance: New San Francisco Effort for Community-Based Trials," AIDS Treatment News, 2 December 1988. [BACK]

28. Albert R. Jonsen and Jeff Stryker, eds., The Social Impact of AIDS in the United States (Washington, D.C.: National Academy Press, 1993), 100. [BACK]

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

30. James, "Community Research Alliance." [BACK]

31. "Decisions for Community-Based Trials," AIDS Treatment News, 7 October 1988; Gina Kolata, "Doctors and Patients Take AIDS Drug Trials into Their Own Hands," New York Times, 15 March 1988, C-3. [BACK]

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

33. Ibid., 93-95, 116. [BACK]

34. Ibid., 118; Nussbaum, Good Intentions, 233. [BACK]

35. Nussbaum, Good Intentions, 234. [BACK]

36. Presidential Commission on the Human Immunodeficiency Virus Epidemic, Report of the Presidential Commission on the Human Immunodeficiency Virus Epidemic, Submitted to the President of the United States, June 24, 1988 (Washington, D.C., 1988), 56. [BACK]

37. Dr. Burton J. Lee Jr., quoted in Kolata, "Doctors and Patients Take AIDS Drug Trials into Their Own Hands." [BACK]

38. Gina Kolata, "Private Doctors Testing AIDS Drugs in Novel Approach," New York Times, 9 July 1989, A-1. [BACK]

39. Charles Linebarger, "CMJ Zaps Drug Maker for AIDS Profiteering," Bay Area Reporter, 4 June 1987, 14. [BACK]

40. "AIDS Action Pledge Holds First Meeting," Bay Area Reporter, 27 August 1987, 14. [BACK]

41. On ACT UP, see "ACT UP/New York Capsule History" (AIDS Coalition to Unleash Power, New York, 1991, photocopy); ACT UP/New York Women and AIDS Book Group, Women, AIDS, and Activism (Boston: South End Press, 1990); Cathy Jean Cohen, "Power, Resistance and the Construction of Crisis: Marginalized Communities Respond to AIDS" (Ph.D. diss., University of Michigan, 1993); Douglas Crimp and Adam Rolston, AIDS Demographics (Seattle: Bay Press, 1990); Gilbert Elbaz, "The Sociology of AIDS Activism, the Case of ACT UP/New York, 1987-1992" (Ph.D. diss., City University of New York, 1992); Josh Gamson, "Silence, Death, and the Invisible Enemy: AIDS Activism and Social Movement `Newness,'" Social Problems 36 (October 1989): 351-365; Maxine Wolfe, "The AIDS Coalition to Unleash Power, New York (ACT UP NY): A Direct Action Political Model of Community Research for AIDS Prevention," in AIDS Prevention and Services: Community Based Research, ed. J. Van Vugt (Westport, Conn.: Bergin Garvey, forthcoming). [BACK]

42. On the cultural sources of ACT UP's representational politics, see also Stephen O. Murray, American Gay (Chicago: Univ. of Chicago Press, 1996), chapter 5. [BACK]

43. Gamson, "Silence, Death, and the Invisible Enemy," 354-355. For the literature on "new social movements," see the sources cited in the introduction of my book, note 87. [BACK]

44. On ACT UP's demonstrations as "performances," see Cindy J. Kistenberg, "Theatrical Intervention in the AIDS Crisis: Performance, Politics, and Social Change" (Ph.D. diss., Louisiana State University, 1992). [BACK]

45. David Firestone, "A Monument to AIDS: GMHC's New Six-Story Home Is a Symbol of 'Success' for Service Organizations That Would Rather Go Out of Business," Newsday, 29 December 1988, II-4. [BACK]

46. Elbaz, "Sociology of AIDS Activism," 65-66, 71-77. [BACK]

47. David Barr, interview by author, tape recording, New York City, 28 April 1994. [BACK]

48. Michelle Roland, interview by author, tape recording, San Francisco, 18 December 1993. [BACK]

49. Roland, interview; Mark Harrington, interview by author, tape recording, New York City, 29 April 1994; Brenda Lein, interview by author, tape recording, San Francisco, 18-19 December 1993. [BACK]

50. Larry Kramer, Reports from the Holocaust: The Making of an AIDS Activist (New York: St. Martin's, 1989), 265, 270 (emphasis in the original). [BACK]

51. Early debates involving AIDS, drug regulation, and access to experimental medications have been well described by Arno and Feiden in Against the Odds and Jonathan Kwitny in Acceptable Risks (New York: Poseidon Press, 1992). [BACK]

52. Frank E. Young et al., "The FDA's New Procedures for the Use of Investigational Drugs in Treatment," Journal of the American Medical Association 259 (April 15, 1988): 2267-2270. [BACK]

53. Larry Kramer, "The F.D.A.'s Callous Response to AIDS," New York Times, 23 March 1987, A-19 (op-ed). [BACK]

54. Martin Delaney, "The Case for Patient Access to Experimental Therapy," Journal of Infectious Diseases 159 (March 1989): 416-419. [BACK]

55. Barr, interview. [BACK]

56. James C. Petersen and Gerald E. Markle, "The Laetrile Phenomenon: An Overview," in Politics, Science, and Cancer: The Laetrile Phenomenon, ed. Gerald E. Markle and James C. Petersen (Boulder, Colo.: Westview Press, 1980), 1-10. [BACK]

57. John S. James, "FDA Reform: Major New Position Paper," AIDS Treatment News, 3 June 1988. [BACK]

58. Gina Kolata, "Odd Alliance Would Speed New Drugs," New York Times, 26 November 1988, A-9. [BACK]

59. "A New Era for New Drugs," Wall Street Journal, 13 March 1987, 18 (editorial). [BACK]

60. Jonathan Kwitny has extensively profiled the most famous such courier, a Los Angeles nurse named Jim Corti, nicknamed "Dextran Man," in Acceptable Risks. [BACK]

61. Miranda Kolbe, "A PWA Movement of Guerilla Clinics," Gay Community News, 7 August 1988, 8. [BACK]

62. "Clinic Update," PI Perspectives, October 1987. [BACK]

63. Gina Kolata, "AIDS Patients and Their Above-Ground Underground," New York Times, 10 July 1988, 32 (section 4). [BACK]

64. "FDA Allows AIDS Patients to Import Banned Drugs," Los Angeles Times, 24 July 1988, 18. [BACK]

65. Philip M. Boffey, "F.D.A. Will Allow AIDS Patients to Import Unapproved Medicines," New York Times, 24 July 1988, A-1; Philip M. Boffey, "Importing AIDS Drugs: Analysis of F.D.A. Policy," New York Times, 26 July 1988, C-1. [BACK]

66. William Booth, "An Underground Drug for AIDS," Science 241 (9 September 1988): 1279. [BACK]

67. Jim Eigo et al., "FDA Action Handbook" (ACT UP/New York, New York, 21 September, 1988, photocopy), 1. [BACK]

68. See Scott A. Hunt and Robert D. Benford, "Identity Talk in the Peace and Justice Movement," Journal of Contemporary Ethnography 22 (January 1994): 488-517; Scott A. Hunt, Robert D. Benford, and David A. Snow, "Identity Fields: Framing Processes and the Social Construction of Movement Identities," in New Social Movements: From Ideology to Identity, ed. Enrique Laraña, Hank Johnston, and Joseph R. Gusfield (Philadelphia: Temple Univ. Press, 1994), 185-208. [BACK]

69. Eigo et al., "FDA Action Handbook," 17. [BACK]

70. Chris Bull, "Seizing Control of the FDA," Gay Community News, 16 October 1988, 1, 3. [BACK]

71. Crimp and Rolston, AIDS Demographics, 76. [BACK]

72. Ibid., 78-81. [BACK]

73. Barr, interview. [BACK]

74. James M. Jasper and Dorothy Nelkin, The Animal Rights Crusade: The Growth of a Moral Protest (New York: Free Press, 1992). [BACK]

75. Harrington, interview. [BACK]

76. "The FDA for Itself," Wall Street Journal, 13 October 1988 (editorial). [BACK]

77. "FDA Relaxes Drug Access Policy," AIDS Treatment News, 29 July 1988. [BACK]

78. Ellen C. Cooper, "Controlled Clinical Trials of AIDS Drugs: The Best Hope," Journal of the American Medical Association 261 (28 April 1989): 2445. [BACK]

79. Cooper, interview. [BACK]

80. See Cooper's comments in Philip M. Boffey, "Washington Talk: Food and Drug Administration: At Fulcrum of Conflict, Regulator of AIDS Drugs," New York Times, 19 August 1988, A-13. [BACK]

81. Martin Delaney, "Patient Access to Experimental Therapy," Journal of the American Medical Association 261 (28 April 1989): 2444, 2447. [BACK]

82. The text from this presentation was published as: Martin Delaney, "The Case for Patient Access to Experimental Therapy," Journal of Infectious Diseases 159 (March 1989): 416-419. [BACK]

83. On "community" as a "micro-mobilization context" for social movement formation, see Clarence Y. H. Lo, "Communities of Challengers in Social Movement Theory," in Frontiers in Social Movement Theory, ed. Aldon D. Morris and Carol McClurg Mueller (New Haven: Yale Univ. Press, 1992), 224-247. [BACK]

84. Kolbe, "PWA Movement of Guerrilla Clinics," 8. [BACK]

85. Nussbaum, Good Intentions, 189-192. [BACK]

86. The quote is from an obituary following Zysman's death from HIV-related causes in 1993 at the age of 38: Obituaries, AAPHR Reporter, fall 1993, 28. [BACK]

87. Antiviral Advisory Committee, meeting transcript (Food and Drug Administration, Bethesda, Md., 13-14 February 1991, photocopy), 50. [BACK]

88. See Pierre Bourdieu and Loïc J. D. Wacquant, An Invitation to Reflexive Sociology (Chicago: Univ. of Chicago Press, 1992), 98-99. [BACK]

89. David Handelman, "Act Up in Anger," Rolling Stone, 8 March 1990, 80-90, 116. [BACK]

90. Harrington, interview. [BACK]

91. Harrington, interview; Handelman, "Act Up in Anger." [BACK]

92. On the struggles and tensions between the humanistic and the technical intelligentsia, see Alvin W. Gouldner, The Future of Intellectuals and the Rise of the New Class (New York: Oxford Univ. Press, 1979). [BACK]

93. Quoted in Arno and Feiden, Against the Odds, 10. [BACK]

94. Steven Shapin, "Science and the Public," in Companion to the History of Modern Science, ed. R. C. Olby et al. (London: Routledge, 1990), 990-1007, quote from 993. [BACK]

95. G'dali Braverman, interview by author, tape recording, San Francisco, 17 December 1993. [BACK]

96. Brenda Lein, interview by author, tape recording, San Francisco, 18-19 December 1993. [BACK]

97. See Jasper and Nelkin, Animal Rights Crusade, 7. [BACK]

98. Louis Lasagna, interview by author, tape recording, Boston, 26 October 1994. [BACK]

99. Harrington, interview. [BACK]

100. See Barbara Epstein, Political Protest and Cultural Revolution: Non-violent Direct Action in the 1970s and 1980s (Berkeley: Univ. of California Press, 1991), 122. [BACK]

101. "Evaluating New Treatment Alternatives," PI Perspectives, October 1987. [BACK]

102. Ibid. [BACK]


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