A rewarding engagement? the treatment action campaign and the politics of HIV/AIDS

Politics and Society

Volumn 33, Issue 4, 2005, Pages 511-565

  Friedman, Steven ^a,b   Mottiar, Shauna ^c  

^a Centre for Policy Studies   (South Africa)

^b RHODES UNIVERSITY   (South Africa)

^c NONE

Author keywords

HIV AIDS; Social movements; South Africa, civil society; Treatment Action Campaign

Indexed keywords

EID: 28744432571     PISSN: 00323292     EISSN: None     Source Type: Journal    
DOI: 10.1177/0032329205280928     Document Type: Review

References (285)

1. Treatment Action Campaign, "An Explanation of the Medicines Act and the Implications of the Court Victory," Treatment Action Campaign statement, April 24, 2001, http:// www.tac.org.za.
2. Treatment Action Campaign, "TAC Welcomes Cabinet Statement Committing to Anti-retroviral Treatment Rollout," TAC News Service, August 8, 2003, moderator@tac.org.za.
3. Treatment Action Campaign, "TAC Responds to American Friends Service Committee Nobel Peace Prize Nomination," TAC News Service, December 2, 2003, moderator@ tac.org.za.
4. See Steven Friedman, "Equity in the Age of Informality: Labour Markets and Redistributive Politics in South Africa," Transformation 50 (2002): 31-55.
5. For an account of the epidemic and its political context, see Peris Jones, '"A Test of Governance': Rights-Based Struggles and the Politics of HIV/AIDS Policy in South Africa," Political Geography 24, no. 4 (May 2005): 419-47.
6. In the 1980s, HIV/AIDS became a significant problem on the mines. But the National Union of Mineworkers resisted discussing the issue on the grounds that right-wing whites on the mines continually focussed on it, claiming that it was evidence of black sexual proclivities.
7. Mark Heywood, TAC Treasurer, interview, March 29, 2004, Johannesburg, South Africa.
8. Treatment Action Campaign, "About TAC," http://www.tac.org.za.
9. Heywood, interview.
10. Perhaps the clearest exposition of the government position is a widely publicised anonymous African National Congress paper, "Castro Hlongwane, Caravans, Cats, Geese, Foot and Mouth Statistics: HIV/AIDS and the Struggle for Humanisation of the African," http://www.virusmyth.net/aids/data/ancdoc. htm, released in 2002. It is not signed but is widely believed to have been authored by a former deputy cabinet minister, Peter Mokaba, who, ironically, died of AIDS.
11. Minister of Health and Others v. Treatment Action Campaign and Others, Constitutional Court CCT8/02 2002 (5) SA 721 (CC), 2002 (10) BCLR 1033 (CC), http://www.concourt.gov.za/judgment.php?case_id= 11915.
12. Treatment Action Campaign, "About TAC."
13. Ntombozuko Khwaza, TAC W Cape Provincial Treatment Project Coordinator, interview, February 18, 2004, Muizenberg, South Africa.
14. Treatment Action Campaign, "Treatment Literacy," http://www.tac.org.za; Nomfundo Dabula, TAC W Cape Provincial Treatment Literacy Coordinator, interview, February 18, 2004, Muizenberg, South Africa; and TAC volunteer, interview, December 12, 2003, Durban, South Africa.
15. Bongi Mkhutyukelwa, Treatment Literacy Coordinator, TAC KZN Province, interview, January 28, 2004, Durban, South Africa.
16. "Activists Import Generic AIDS Drugs to South Africa," Reuters Health Information, February 1, 2002, http://www.hivandhepatitis.com/recent/ pricing/020102c.html.
17. Khwaza, interview.
18. Syndi Blose, TAC Treatment Project Coordinator, KwaZulu Natal, interview, January 28, 2004, Durban, South Africa.
19. Nondumiso Mvinjelwa, TAC Western Cape Provincial Administrator, interview, February 18, 2004, Khayelitsha, South Africa; Gugu Mpongose. Deputy Chairperson, TAC KZN Provincial Executive Committee, and KZN provincial representative to the TAC NEC, interview, December 12, 2003, TAC KZN office, Durban, South Africa; and Sfiso Nkala, TAC KZN Organiser, interview, December 3, 2003, TAC KZN office, Durban, South Africa.
20. Ralph Berold, TAC Human Resource Manager, interview, February 19, 2004, Muizenberg, South Africa.
21. Thabo Cele, TAC KwaZulu-Natal Coordinator, interview, December 3, 2003, TAC KZN office, Durban, South Africa.
22. Observation of TAC University of KwaZulu Natal TAC branch meeting, October 15, 2003 Durban, South Africa.
23. Cele, interview
24. Jacqui Mpolokeng, HIV/AIDS Coordinator, COSATU, interview, May 17, 2004, Johannesburg, South Africa.
25. Nkala, interview.
26. Zackie Achmat, TAC Chairperson, interview, February 19, 2004, Muizenberg, South Africa; and Nathan Geffen, TAC National Manager, interview, February 19, 2004 Muizenberg, South Africa. A communication from TAC in early January gave a membership of 7,698 but with the rider that it had increased since this count by an unspecified amount. Rukia Cornelius, personal communication to Shauna Mottiar, January 6, 2004.
27. Geffen, personal communication, July 23, 2004.
28. Achmat, interview.
29. Mpongose, interview.
30. Geffen, interview.
31. Ashwin Desai, researcher and activist, interview, May 19, 2004, Durban, South Africa; and Dale McKinley, Anti-Privatisation Forum, interview, May 25,2004, Johannesburg, South Africa.
32. Sipho Mthathi, TAC Deputy Chairperson and South Africa National Treatment Literacy Coordinator, interview, February 19, 2004, Muizenberg, South Africa.
33. Heywood, interview.
34. Nonkosi Khumalo, TAC National Treatment Project Coordinator, interview, February 19, 2004, Muizenberg, South Africa.
35. Other donors of grants were (in order of size of donation): Medicins sans Frontieres, Rockefeller Foundation, South African Development Fund, Kaiser Foundation, UNAIDS, an anonymous international pop star, AIDS Foundation of SA, and Oxfam. Treatment Action Campaign, "TAC Audit for Year Ending February 2003," http://www.tac.org.za/ audit/audit4/audit.pdf.
36. Geffen, interview.
37. Dawn Wilson, TAC Financial Manager, interview, April 1, 2004.
38. Treatment Action Campaign, "TAC Audit for Year Ending February 2003."
39. Geffen, interview.
40. Heywood, interview; and Geffen, interview.
41. See for example James S. Fishkin, The Voice of the People: Public Opinion and Democracy (New Haven, Conn.: Yale University, 1997);
42. and Carole Pateman, Participation and Democratic Theory (Cambridge: Cambridge University Press, 1976).
43. Treatment Action Campaign, Report of the Second TAC National Congress, August 1-3, 2003, Coastlands Conference Centre Durban, South Africa, http://www.tac.org.za/ Documents/SecondNationalCongressReport.pdf.
44. Bulelani Mvotho, TAC Khayelitsha District Organiser, interview, February 18, 2004, Khayelitsha, South Africa; Zakhele Xaba, Secretary, TAC PEC KZN, interview, December 2, 2003, Pietermaritzburg, South Africa; and Thembeka Majali, TAC Western Cape Provincial Coordinator, interview, February 18, 2004, Hout Bay, South Africa.
45. KwaZulu Natal has four districts, Gauteng six, and Western Cape nine. Interview, TAC officials, Muizenberg, South Africa.
46. "Decisions about tactics and strategy are generally made at national level and then taken to provincial and district or branch level." Xaba, interview.
47. Mvotho, interview.
48. The toyi-toyi is a dance used by South African demonstrators. Mvotho, interview.
49. Pholokgolo Ramothwala, TAC Gauteng Provincial Coordinator, interview, March 18, 2004, Johannesburg, South Africa.
50. Wilson, interview.
51. Mkhutyukelwa, interview. 51. Wilson, interview.
52. Wilson, interview.
53. Cele, interview.
54. Geffen, personal communication.
55. Mvotho, interview.
56. Nkala, interview.
57. Cele, interview.
58. Kathleen Pithouse, Chair, TAC University of KZN Durban Branch, interview, December 4, 2003, Durban, South Africa.
59. Zodwa Ndlovu, TAC volunteer, Umlazi Branch, interview, January 28, 2004, Umlazi, South Africa.
60. Kimendhri Pillay, TAC UND Branch Secretary, interview, December 8, 2003, Durban, South Africa.
61. Kimendhri Pillay, personal communication, July 22, 2004; and Kathleen Pithouse, personal communication, July 22, 2004.
62. Mandisa Mbali, TAC UKZN Durban Coordinator, interview, December 8, 2003, Durban, South Africa.
63. Ramothwala, interview.
64. Mkhutyukelwa, interview.
65. Ramothwala, interview.
66. Xaba, interview.
67. Berold, interview.
68. Mthathi, interview.
69. Heywood, personal communication, July 9, 2004.
70. Mvotho, interview.
71. TAC Tongaat branch member, interview, December 12, 2003, Durban, South Africa.
72. Steven Friedman, Building Tomorrow Today: African Workers in Trade Unions (Johannesburg, South Africa: Ravan, 1985).
73. Mthathi, interview.
74. Heywood, interview.
75. Heywood, personal communication, July 9, 2004.
76. Desai, interview; and McKinley, interview.
77. Geffen, interview.
78. Achmat, interview.
79. Desai, interview.
80. Jones, " 'A Test of Governance.' "
81. Geffen, interview.
82. Ramothwala, interview.
83. For example, "The reason I participate in TAC is because I have 2 sisters who are ill" (Nomvula Khumalo, Treasurer, TAC KZN PEC, interview, December 3, 2003, Durban, South Africa); "I participate in TAC because I believe in the need for social service - I also know someone who died of AIDS and I am angry about it because, given the appropriate treatment, it need not have happened" (Pithouse, interview); and "I joined TAC because I am a parent affected by AIDS - I am a trained councillor and received further training from TAC" (Verulam volunteer, interview, December 12 2003, Verulam, South Africa).
84. KZN branch members, interview, December 12, 2003.
85. Heywood, interview. In a similar vein, he mentions Gugu Dlamini, who was murdered because she openly declared her HIV positive status.
86. Grassroots activists, interviews, January 28, 2004, Durban, South Africa.
87. Mvotho, interview.
88. Mvinjelwa, interview.
89. Nkosi Mthethwa, Chair, TAC KZN PEC, interview, December 3, 2003, Durban, South Africa.
90. Activist, interview.
91. Achmat, interview.
92. The minister said people "come with busses and go to commissions where they wait for the white man to tell them what to do. Our Africans say: Let us wait for the white man to deploy us; to say to us: toyi-toyi (protest) here." http://www.massiveeffort.org/showstory.asp?id= 1227.
93. Heywood, interview.
94. Follow-up phone interviews with Heywood, Mthathi, and Geffen, June 2004.
95. Mbali, interview.
96. South Africa Department of Health, National HIV and Syphilis Sero-prevalence Survey of Women Attending Public Antenatal Clinics in South Africa-200], Summary Report (PretoriaSouth Africa Department of Health,: 2002);
97. and Nelson Mandela/HSRC Study of HIV/AIDS, South African National HIV Prevalence, Behavioural Risks and Mass Media Household Survey 2002, cited by Jenni Fredriksson and Steve Berry, "South Africa: HIV/AIDS Statistics," http://www.avert.org/safricastats.htm.
98. Majali, interview.
99. Cele, interview.
100. Majali, interview; Xaba, interview; Nkala, interview; Pithouse, interview; and Kunene, interview.
101. Mvotho, interview.
102. Mvotho, interview.
103. Mthethwa, interview; and Cele, interview.
104. Xaba, interview.
105. Geffen, personal communication.
106. Mbali, interview.
107. Mthethwa, interview; and Xaba, interview.
108. Berold, interview.
109. Geffen, personal communication.
110. Pillay, interview.
111. Mkhutyukelwa, interview.
112. See, for example, Ashwin Desai, We Are the Poors: Community Struggles in Post-Apartheid South Africa (New York: Monthly Review Press. 2002).
113. Heywood, interview.
114. Rosemary Mambo, Coordinator of Thatnusizo Support Group in Inanda Durban, interview, January 28, 2004, Durban, South Africa.
115. Geffen, interview.
116. See Mahmood Mamdani, Citizen and Subject: Contemporary Africa and the Politics of Late Colonialism (Kampala, Uganda: Fountain, 1995).
117. Heywood, interview.
118. Kunene, interview.
119. Mvotho, interview.
120. Geffen, interview.
121. Mvotho, interview.
122. Mthethwa, interview.
123. Dabula, interview.
124. Mkhutyukelwa, interview.
125. Mthathi, interview.
126. Cele, interview.
127. Geffen, interview.
128. Kevin McKenna, Boehringer Ingelheim, interview, April 28, 2004. Johannesburg, South Africa.
129. Treatment Action Campaign, "Condemn the Threats by NAPWA Against AIDS Activists" TAC News Service, March 30, 2004, moderator@tac.org.za.
130. Heywood, personal communication, July 10, 2004.
131. Heywood, interview.
132. Berold, interview.
133. This view was expressed forcefully in discussions between members of the research team participating in the social movements study convened by the Centre for Civil Society, University of KwaZulu Natal, of which this study was a part.
134. Sidney Tarrow, Power in Movement (Cambridge: Cambridge University Press, 1994), 18.
135. Heywood, interview.
136. Heywood, interview.
137. Heywood, interview.
138. Mbali, interview.
139. Geffen, interview.
140. Desai, interview.
141. Mthathi, interview; and Heywood, interview.
142. Doreen Atkinson, "Insuring the Future? The Bill of Rights," in The Small Miracle: South Africa's Negotiated Settlement, ed. Steven Friedman and Doreen Atkinson (Johannesburg: Ravan, 1995), 121-47.
143. Achmat, interview. For a critique of failure to grasp this point, see Kerry Chance and Mandisa Mbali, "Chance/Mbali on Limits to Invoking 'False Consciousness,'" July 2, 2004, CCS-l@lists.nu.ac.za.
144. Nedlac was established by statute in 1995 as a forum at which government, labour, business and "community organisations" can consider economic, labour, and social policy.
145. Mthathi, interview.
146. Heywood, interview.
147. Nkala, interview.
148. Mpolokeng, interview.
149. The Commissions were established by the constitution. Achmat, interview.
150. Mpongose, interview.
151. Achmat, interview.
152. Achmat, interview.
153. Mbali, interview.
154. Mpongose, interview.
155. Achmat, interview.
156. See, for example, Sakhela Buhlungu, "Trade Union Organization and Capacity in the 1990s: Continuities, Changes and Challenges for PPWAWU," in Trade Unions and Democratization in South Africa, 1985-1997, ed. Glenn Adler and Eddie Webster (New York: St Martin's, 2000), 90;
157. see also Karl von Holdt, Transition from Below: Forging Trade Unionism and Workplace Change in South Africa (Pietermaritzburg, South Africa: University of Natal, 2003).
158. Trevor Ngwane, "Interview: Sparks in the Township," New Left Review 22 (July-August 2003), http://www.newleftreview.net/NLR25603.shtml.
159. Salim Vally, "The Political Economy of State Repression in South Africa," CCS-l Digest 1, no. 1169 (March 15, 2004), ccs-l-request@lists.nu. ac.za.
160. Heywood, interview.
161. Mvinjelwa, interview.
162. Majali, interview.
163. Mario Claasen, TAC Clinics Programme Coordinator, interview, February 19, 2004, Muizenberg, South Africa.
164. Ncala, interview.
165. Desai, interview.
166. Majali, interview.
167. Geffen, interview.
168. Heywood, personal communication, July 9, 2004.
169. Government official, discussion, Pretoria, South Africa, July 19, 2004.
170. Majali, interview.
171. Claasen, interview.
172. Achmat, interview; and Geffen, interview.
173. Mthathi, interview.
174. Cele, interview. The ruling upheld TAC's view that the ARV nevirapine should be available to prevent mother-to-child transmission of HIV.
175. Achmat, interview.
176. Geffen, interview.
177. Kunene, interview.
178. Political analyst, interview, June 2004.
179. Mthathi, interview.
180. Mthathi, interview.
181. Xaba, interview. Also, Mpongose, interview; Mkhutyukelwa, interview; and Ramothwala, interview.
182. Nkala, interview.
183. Ramothwala, interview.
184. Kunene, interview.
185. Geffen, interview.
186. Achmat. interview.
187. McKenna, interview.
188. Before the Cabinet announcement, the government repeatedly insisted that it was not opposed to distributing ARVs, but was "piloting" their use in public health facilities.
189. For an analysis which blends both perspectives, see Adam Przeworski, Capitalism and Social Democracy (Cambridge: Cambridge University Press, 1987).
190. Achmat, interview.
191. Achmat, interview.
192. Khumalo, interview.
193. Achmat, interview.
194. Mthethwa, interview.
195. McKenna, interview.
196. Geffen, interview.
197. Kunene, interview.
198. Nkala, interview.
199. Mpolokeng, interview.
200. Nkala, interview.
201. Mpolokeng interview.
202. Xaba, interview.
203. Mthethwa, interview.
204. Kunene, interview.
205. Heywood, personal communication, July 9, 2004.
206. Heywood, interview.
207. Paul Schindler "South African AIDS Activists Share Their Experience and Hope," Gay City News, in CCS-l Digest 1, no. 1019 (November 17, 2003), ccs-l-request@lists.nu.ac.za.
208. Achmat, interview.
209. Mvotho, interview.
210. Geffen, interview.
211. Mbali, interview.
212. Kunene, interview.
213. Geffen, interview.
214. Desai, interview.
215. Heywood, interview.
216. Desai, interview.
217. Geffen, personal communication.
218. Achmat, interview.
219. Friedman, "Equity in the Age of Informality."
220. Przeworski, Capitalism and Social Democracy.
221. McKenna, interview.
222. Achmat, interview.
223. See Steven Friedman, "Democracy, Inequality and the Reconstitution of Politics," in Democratic Governance and Social Inequality, ed. Joseph S. Tulchin with Amelia Brown (Boulder, Colo.: Lynne Rienner, 2002), 13-40.
224. Achmat, interview.
225. Nkala, interview.
226. Njogu Morgan, TAC International Coordinator, interview, April 1, 2004, Johannesburg, South Africa.
227. Achmat, interview.
228. Morgan, interview.
229. Morgan, interview.
230. Achmat, interview.
231. Morgan, interview.
232. Morgan, interview.
233. Morgan, interview.
234. Treatment Action Campaign, "Invest in Health Not War," TAC News Service, June 14, 2004, moderator@tac.org.za.
235. Heywood, interview.
236. Achmat, interview.
237. For example, Mandisa Mbali, TAC UKZN Durban Coordinator, interview, December 8,2003, Durban, South Africa;
238. Mpongose, interview;
239. and Johanna Ncala, TAC Gauteng Treatment Literacy Coordinator, interview, March 24, 2004, Johannesburg, South Africa.
240. Dudu Dlamini, TAC Gauteng Treatment Project Coordinator, interview, March 24, 2004, Johannesburg, South Africa.
241. Zakhele Xaba, Secretary, TAC PEC KwaZulu Natal, interview, December 2, 2003, Pietermaritzburg, South Africa.
242. "We link GEAR and its neo-liberal stance (e.g. privatisation) to the problems we are highlighting. TAC never makes any mention of the macroeconomic framework" (McKinley, interview).
243. Heywood, interview.
244. Mthathi, interview.
245. Achmat, interview.
246. Heywood, interview.
247. Cele, interview.
248. Mthathi, interview.
249. Treatment Action Campaign, "TAC Newsletter: Meeting in JHB, US/SACU, SACTWU, TAC Ad, Letter to Dr. Zokufa, ALP Jobs, Health Systems Workshop, Malan, Trad. Healing," TAC News Service February 20, 2004, moderator@tac.org.za.
250. Treatment Action Campaign, "News 2002," http://www.tac.org.za/ newsletter/news_2002.htm.
251. Nkala, interview.
252. Mbali, interview.
253. Mpongose, interview.
254. Heywood, interview.
255. Xolani Kunene, TAC Gauteng Provincial Organiser, interview, March 24, 2004, Johannesburg, South Africa.
256. Friedman "Building Tomorrow Today."
257. Desai, interview; and McKinley, interview.
258. McKinley, interview.
259. Desai, interview.
260. McKinley, interview.
261. Vally, "The Political Economy of State Repression."
262. Desai, "We Are the Poors," 147.
263. Adam Habib, "State-Civil Society Relations in Post-Apartheid South Africa," SA Labour Bulletin 27, no. 6 (December 2003): 18.
264. Naomi Chazan, "Discussion - Governability and Compliance during the Transition," in Governability during the Transition, ed. Riaan de Villiers (Johannesburg, South Africa: Centre for Policy Studies, 1993), 14.
265. Michael Edwards, Civil Society (Oxford: Polity, 2004), 33.
266. See also Habib, "State-Civil Society Relations."
267. Cyrus Zirakzadeh, Social Movements in Politics: A Comparative Study (New York: Longman, 1997).
268. Adam Habib, Richard Ballard, and Imraan Valodia, Project concept paper, 2.
269. Manuel Castells, The Power of Identity, vol. 2 of The Information Age: Economy, Society and Culture (Malden, Mass.: Blackwell, 1997), 3.
270. Ngwane, "Interview."
271. Desai "We Are the Poors." See also "Finding Ferial's Rebellion," June 29, 2004, ccs-l@lists.ukzn.ac.za.
272. Ashwin Desai, "Between the Broken and the Built," interview with Holley Wren Spaulding, http://www.nu.ac.za/ccs. Cited in Ebrahim Fakir, "Institutional Restructuring, State-Civil Society Relationships and Social Movements," Development Update 5, no. 1 (April 2004): 143.
273. Cited in Michael Sachs, '"We Don't Want the Fucking Vote': Social Movements and Demagogues in South Africa's Young Democracy," SA Labour Bulletin 27, no. 6 (December 2003): 24.
274. Ashwin Desai quoted in Paul Kingsnorth, One No, Many Yesses: A Journey to the Heart of the Global Resistance Movement ( New York: Free Press, 2003), 121.
275. Cited in Sachs, "'We Don't Want the Fucking Vote.'"
276. See Peter Waterman, "The International Call of Social Movements," SA Labour Bulletin 27, no. 6 (December 2003): 28.
277. Cited in Fakir, "Institutional Restructuring," 143.
278. Jacklyn Cock, "Local Social Movements: Some Questions from the 'Back Alleys' of South Africa," SA Labour Bulletin 27, no. 6 (December 2003): 21.
279. Morgan, interview; Mthathi, interview; and Heywood, interview.
280. Directorate Health Systems Research, South Africa Department of Health, National HIV and Syphilis Antenatal Sero-Prevalence Survey in South Africa 2002 (Pretoria: South Africa Department of Health, 2002).
281. Health Economics and HIV/AIDS Research Division (HEARD), University of Natal, HIV/AIDS Statistics (Durban, South Africa: University of Natal, 2003).
282. T. Barnett and A. Whiteside, Aids in the Twenty-first Century: Disease and Globalisation (Hampshire, UK: Palgrave Macmillan, 2002), 121.
283. Policy Project for Bureau for Africa, Office of Sustainable Development, U.S. Agency for International Development HIV/AIDS in Southern Africa: Background, Projections, Impact and Interventions: Policy Project, 2001), 35.
284. V. Van der Vliet, "South Africa Divided against AIDS: A Crisis of Leadership," in AIDS and South Africa: The Social Expression of a Pandemic, ed. A. D. Kauffman and D. L. Lindauer (New York: Macmillan, 2004).
285. South African Government Operational Plan for Comprehensive HIV and AIDS Care, Management and Treatment for SA, 19 November 2003, http://www.info.gov.za/ issues/hiv/careplan.htm