Science, Denial and Politics: “Boundary Work” in the Provision of AIDS Treatment in South Africa

Abstract

Political debates over HIV/AIDS in South Africa have boundaries demarcated by science. South Africa probably has more than five million people living with HIV/AIDS—the highest number of any country in the world. It also hosts the world's largest program for providing antiretrovirals (ARVs). Yet the national government is notorious for its lack of leadership on AIDS issues and for its president's questioning of the link between HIV and AIDS, accusing scientists of racism and describing ARVs as poison. South Africa constitutes the most well-known successes and failures in AIDS treatment, but the relationship between them is in need of scrutiny. In this article, I will use primary data collected during a vertical study in the Western Cape Province to analyze the political boundaries that transverse the AIDS treatment discourse from national to provincial and clinic levels. This article argues that boundary work in the AIDS treatment discourse is still concerned with defining what counts as science. The national vs. regional political context helps in constructing the Western Cape as the one that embraces “science” while the rest of the country lags behind in the ARV roll-out. This boundary struggle between science and politics shapes debate and implementation of the country's treatment program for people living with AIDS.

Notes

¹ Cindy Patton, Globalizing AIDS (Minneapolis: University of Minnesota Press, 2002), p. xii.

² Conflicts between science and politics and their intermingling and boundary-marking are certainly not unique to South Africa or AIDS; a recent special issue of Social Research documents some of these conflicts in the American context. See Arien Mack, “Politics and Science: Editor's Introduction”, Social Research 73:3 (2006) pp. v–vi.

^*An earlier version of the article was presented at the African Studies Association Annual Conference, San Francisco, 16-19 November 2006. The author would like to thank Lene Hansen, Mark Hunter, Christian Lund, Nicoli Nattrass, Vinh-Kim Nguyen, Stefano Ponte and two anonymous reviewers for their comments on earlier versions of this article, and the Danish Development Research Council for funding. They are in no way responsible for its content, and as always all shortcomings are attributable solely to the author.

³ An archaeology of the term “roll-out” merits another paper, but it has been ubiquitous in the global ARV discourse. The Wikipedia definition of “roll-out” is poker jargon used for a game phase in which players receive all their cards up front and know the final value of their hand in early betting rounds. The term is interesting in its metaphorical reference to something that is complete and ready to go but must be rolled into place, like a carpet or turf grass.

⁴ The use of HIV prevalence statistics is notoriously ideologically biased; reputable statistics using different demographic models and coming from different sources vary by more than a million people in their estimates of the number of South Africans living with HIV.

⁵ The South African government's position on AIDS has reached the level of global caricature: The New York Times reports on “deadly quackery”; the Financial Times refers simply to the “chaos within”; The New Yorker writes about “the Denialists.” John Moore and Nicoli Nattrass, “AIDS and South Africa: Deadly Quackery,” The New York Times, June 4, 2006; Lionel Barber and Alec Russell, “Mbeki Seeks Ways to Limit Chaos to the North and Within,” Financial Times, April 2, 2007; Michael Specter, “The Denialists,” The New Yorker 83:3 (2007), pp. 32–38. As characterized in a recent book, “the orthodox position is presented seriously; the dissident position is described with irritation or mockery.” Didier Fassin, When Bodies Remember: Experiences and Politics of AIDS in South Africa (Berkeley and Los Angeles: University of California Press, 2007), p.76.

⁶ Interview SA070, South Africa, September 8, 2005.

⁷ The new primary data for this article come from fieldwork in the Western Cape Province of South Africa from June until December 2005. I conducted interviews, attended meetings and seminars and consulted local researchers within the province on the roll-out of ARVs and issues of access and adherence. All interview respondents have been granted confidentiality in this project, given the sensitive nature of the topic. Public statements and published texts are attributed to their authors. Lisa Ann Richey, “Anti-Viral but Pro-Natal? ARVs and Reproductive Health: The View from a South African Township,” in Carole Browner and Carolyn Sargent (eds), Reproduction, Globalization and the State (Durham, NC: Duke University Press, forthcoming 2008) contains analysis from local work in an ARV township clinic.

⁸ Thomas F. Gieryn, “Boundary-work and the Demarcation of Science from Non-science: Strains and Interests in Professional Ideologies of Scientists,” American Sociological Review 48 (December 1983), pp. 781–795.

⁹ David H. Guston, “Stabilizing the Boundary between US Politics and Science: the Role of the Office of Technology Transfer as a Boundary Organization,” Social Studies of Science 29:1(1999), pp. 87–111.

¹⁰ Andrew Abbott, “Things of Boundaries,” Social Research 62:4 (1995), pp. 857–882.

¹¹ See Jennifer Johnson-Hanks, “What Kind of Theory for Anthropological Demography?” Demograpic Research 16:1 (2007), pp. 1–26.

¹² Gieryn, op. cit., p. 792.

¹³ Steven Epstein, Impure Science: AIDS, Activism and the Politics of Knowledge (Berkeley and Los Angeles: University of California Press, 1996), p. 6.

¹⁴ This perspective draws on the medical anthropology literature; for example, Susan Reynolds Whyte, Sjaak van der Geest, and Anita Hardon, Social Lives of Medicines (Cambridge: Cambridge University Press, 2003).

¹⁵ See, for comparison, Lene Hansen, Security as Practice: Discourse Analysis and the Bosnian War (London: Routledge, 2006), p. 214.

¹⁶ Address to the National Council of Provinces, Cape Town, October 28, 1999, < http://www.dfa.gov.za/docs/speeches/1999/mbek1028.htm> (emphasis added).

¹⁷ Some would mark denialism as starting with the “Sarafina affair,” when the government was compromised by a corruption scandal with monies meant to go into an AIDS education initiative by the Department of Health. Others might begin with the “Virodene affair,” which implicated Mbeki in an obsessive seeking of “African solutions to African problems” when he supported a Pretoria lab (with all white scientists) that claimed to have produced an indigenous anti-retroviral. See, for example, Nicoli Nattrass, Mortal Combat: AIDS Denialism and the Struggle for Antiretrovirals in South Africa (Pietermaritzburg: University of KwaZulu-Natal Press, 2007). While both of these provide critical context for the statement to come, I think that the address to the National Council of Provinces, because of its forum for public science, marks most clearly the distinction Mbeki was drawing between his position and that which he perceived as the one taken by international experts, national scientists, and big pharmaceutical companies.

¹⁸ Nicoli Nattrass, South Africa's ‘Roll-out’ of Highly Active Antiretroviral Therapy: A Critical Assessment, Centre for Social Science Research (CSSR) Working Paper no. 158, Cape Town, 2006, p. 7.

¹⁹ Nattrass, Mortal Combat, op. cit.

²⁰ Neville Hoad, “Thabo Mbeki's AIDS Blues: The Intellectual, the Archive, and the Pandemic,” Public Culture 17:1 (2005), pp. 101–127.

²¹ I want to make an explicit note that by analyzing the denialist perspective from a different vantage point, this should not in any way be read as supporting or legitimating this perspective. There is no productive debate around whether HIV causes AIDS.

²² See Deborah Posel, “Getting the Nation Talking about Sex”: Reflections on the Politics of Sexuality and “Nation-Building” in Post-Apartheid South Africa, Wits Institute for Social and Economic Research Discussion Paper, University of Witswatersrand, 2003.

²³ “Mbeki ‘Betrayed’ S Africa on Aids,” BBC News, < http://news.bbc.co.uk/go/pr/fr/-/1/hi/world/africa/4282316.stm>.

²⁴ Richard E. Chiasson, “The World AIDS Conference in Durban, South Africa – Science, Politics, and Health,” The Hopkins HIV Report, September 2000, p. 3, cited in Hannah Delane Baker, Negotiating Power and Profitability of HIV/AIDS in South Africa, Masters Thesis, Program in Development Studies, Brown University, 2005, p. 26.

²⁵  < http://www.journaids.org/politicsofhiv.php>.

²⁶ See, for example, Baker, op. cit.; Anthony Butler, “South Africa's HIV/AIDS Policy, 1994-2004: How Can It Be Explained?” African Affairs 104:417 (2005), pp. 591–614; Nathan Geffen, Echoes of Lysenko: State-Sponsored Pseudo-Science in South Africa, CSSR Working Paper no. 149, Cape Town, 2006; Hoad, op. cit.; Krista Johnson, “Globalization, Social Policy and the State: An Analysis of HIV/AIDS in South Africa,” New Political Science 27:3 Sept. (2005), pp. 309–329; Krista Johnson, “The Politics of AIDS Policy Development and Implementation in Postapartheid South Africa,” Africa Today 51:2 (2004), pp. 107–128; Anand Singh, “Media Perceptions and Academic Responses to South African President Thabo Mbeki,” Journal of Social Science 13:3 (2006), pp. 163–176; Posel, op. cit.; Nattrass, South Africa's ‘Roll-out’, op. cit.; Nicoli Nattrass, The Moral Economy of AIDS in South Africa (Cambridge: Cambridge University Press, 2004); Samantha Willan, “Briefing: Recent Changes in the South African Government's HIV/AIDS Policy and its Implementation,” African Affairs 103 (2004), pp. 109–117.

²⁷ Mandisa Mbali, “A Long Illness”: Towards a History of NGOs, Government and Medical Discourse Around AIDS Policy-Making in South Africa, Honors Thesis, Department of History, University of Kwa-Zulu Natal, 2001, p. 49.

²⁸ Chiasson, op. cit.

²⁹ Chiasson, op. cit.

³⁰ “In South Africa, A Dramatic Shift on AIDS,” Washington Post Foreign Service, October 27, 2006.

³¹ Geffen, op. cit., p. 2.

³² See Johnson, “Globalization, Social Policy and the State,” op. cit.

³³ Fassin, op. cit., pp. 97–98.

³⁴ As stated in his biographical note: “Ahmed C. Bawa is Deputy Vice-Chancellor for Research, Knowledge Production, and Partnerships at the University of KwaZulu-Natal. He was recently Professor and Distinguished Lecturer of Physics at Hunter College, CUNY. Before that he worked as Higher Education program officer at the Ford Foundation. He has been a part of many policy processes and commissions in South Africa. Bawa holds a Ph.D. in Theoretical Physics from the University of Durham.” < http://www.newschool.edu/centers/socres/vol72/issue723.htm#edintro>.

³⁵ Ahmed C. Bawa, “Science, Power, and Policy Intersecting at the HIV/AIDS Pandemic,” Social Research 72:3 (2005), pp. 618–619.

³⁶ Cindy Patton, Inventing AIDS (New York: Routledge, 1990), p. 53.

³⁷ See Willan, op. cit.

³⁸ Theo Smart, “South Africa's HIV Treatment Programme: Is Slow Progress a Sign of Lack of Commitment?” HIV&AIDS Treatment in Practice 23, available at < http://www.africafocus.org/docs04/hiv0402b.php>, distributed by [email protected] (February 6, 2004).

³⁹ Nattrass, South Africa's ‘Roll-out’, op. cit., p. 3. Thabo Mbeki's 2006 State of the Nation address is available at < http://www.anc.org.za/ancdocs/history/mbeki/2006/tm0203.html>.

⁴⁰ Nattrass, South Africa's ‘Roll-out’, op. cit., p. 5.

⁴¹ Geffen, op. cit., p. 1.

⁴² Notes from the fifth meeting of the Joint Civil Society Monitoring Forum meeting, August 29, 2005, Khayelitsha, Western Cape. Official minutes can be accessed from < http://dedi20a.your-server.co.za/alp/images/upload/report5thmeeting.pdf>.

⁴³ Department of Health, Republic of South Africa, National HIV and Syphilis Antenatal Sero-Prevalence Survey in South Africa 2004 (Pretoria: Department of Health, 2005).

⁴⁴ This represents the number of people on HAART in both public and private sector provision as a percentage of the number of people needing HAART estimated by the ASSA2003 demographic model.

⁴⁵ Nattrass, South Africa's ‘Roll-out’, op. cit., p. 5.

⁴⁶ Penelope Cummins, “Access to Health Care in the Western Cape”, The Lancet, Supplement, 360 (December 2002), p. 49.

⁴⁷ Fareed Abdullah, “The Complexities of Implementing Antiretroviral Treatment in the Western Cape Province of South Africa,” Development Update 5:3 (2005), pp. 246–247.

⁴⁸ Department of Health, Republic of South Africa, National HIV and Syphilis: Antenatal Sero-prevalence Survey in South Africa, Pretoria, 2005.

⁴⁹ See Mickey Chopra and David Saunders, “From Apartheid to Globalisation: Health and Social Change in South Africa” Hygiea Internationalis 4:1 (2004), pp. 153–174, < http://www.ep.liu.se/ej/hygiea/ra/023/paper.pdf> for a discussion of the public health disparities between communities within the Western Cape.

⁵⁰ See Johnson “The Politics of AIDS Policy Development,” op. cit.; Justin O. Parkhurst and Louisiana Lush, “The Political Environment of HIV: Lessons from a Comparison of Uganda and South Africa,” Social Science and Medicine 59 (2004), pp. 1913–1924; Lisa Ann Richey and Stine Jessen Haakonsson, Access to ARV Treatment: AID, Trade and Governance in Uganda, DIIS Working Paper no. 19, November 2004 < http://www.diis.dk/sw6140.asp>); Jeremy Youde, “Ideology's Role in AIDS Policies in Uganda and South Africa,” Global Health Governance 1:1 (2007), pp. 1–16, for a comparison at the national level between South Africa and Uganda in the realm of AIDS politics and policy.

⁵¹ See Trude Holm Naimak, “Antiretroviral Treatment in the Western Cape: A Success Story Facilitated by the Global Fund,” CSSR Working Paper no. 161, Cape Town, 2006; Justin O. Parkhurst, “The Crisis of AIDS and the Politics of Response: The Case of Uganda,” International Relations 15:6 (2001), pp. 69–87.

⁵² The provincial government entered into partnerships with at least six other NGO or research-based initiatives for AIDS treatment in public facilities in the Western Cape. Naimak, op. cit., p. 7.

⁵³ Interview SA070.

⁵⁴ Paul Farmer, physician and medical anthropologist, has shown by example that ARV treatment can resurrect patients suffering from the late stages of AIDS, even in the poorest circumstances. Farmer's books link his medical and moral missions with an important political message of “putting the poor first” (see P. Farmer, AIDS and Accusation: Haiti and the Geography of Blame (Berkeley: University of California Press, 1992); P. Farmer, Infections and Inequalities: The Modern Plagues (Berkeley: University of California Press, 1999); P. Farmer (ed.) Pathologies of Power: Health, Human Rights, and the New War on the Poor (Berkeley: University of California Press, 2003)). He has become the first “global doctor,” known through the anecdotes and photographs of his Haitian community members, but substantiated with science, effectiveness, and efficiency. See Lisa Ann Richey and Stefano Ponte, Better (RED)™ than Dead: ‘Brand Aid’, Celebrities and the New Frontier of Development Assistance, DIIS Working Paper no. 26, September 2006, < http://www.diis.dk/sw27885.asp>.

⁵⁵ TAC is a critical player in the Western Cape HIV/AIDS debates, providing the legitimizing force of “civil society” to the campaign for access to quality treatment for AIDS. Nationally, it conducted the first post-apartheid civil disobedience campaign demanding treatment in March and April 2003, and it is one of the strongest civil society organizations in the country. See Alex De Waal, AIDS and Power: Why There Is No Political Crisis—Yet (London: Zed Books, 2006) and Willan, op. cit.

⁵⁶ I heard this during my interview with Goemaere, but it is also available in Samantha Power, “The AIDS Rebel,” The New Yorker, May 2003.

⁵⁷ I heard this during my interview with Goemaere, but it is also available in Samantha Power, “The AIDS Rebel,” The New Yorker, May 2003

⁵⁸ Abdullah, op. cit., p. 249.

⁵⁹ Interview SA070.

⁶⁰ Interview SA070

⁶¹ See also Fassin, op. cit.

⁶² Adam Ashforth and Nicoli Nattrass, Ambiguities of “Culture” and the Antiretroviral Rollout in South Africa, CSSR Working Paper no. 156, Cape Town, 2006, p. 11.

⁶³ The South African government amended the constitution to allow elected representatives to change their political affiliations without losing their seats at national, provincial, and local levels, called “floor crossing.” This has been quite controversial in relation to South African party politics at all levels. See “Floor Crossing at a Glance,” research report by IDASA, June 21, 2004, < http://www.idasa.org.za>.

⁶⁴ Notes from Fareed Abdullah lecture, University of Cape Town, September 23, 2005.

⁶⁵ These were the MSF program in Khayelitsha, pilot projects in Gugulethu, Grote Schuur Hospital, the Red Cross Children's Hospital, and patients in clinical trials at Somerset and Tygerberg Hospitals. Nicoli Nattrass and Nathan Geffen, Providing Antiretroviral Treatment for All Who Need It in South Africa, CSSR Working Paper no. 42, Cape Town, 2003, p. 15.

⁶⁶ D. Pienaar, L. Myer, S. Cleary, D. Coetzee, D. Michaels, K. Cloete, H. Schneider, and A. Boulle, Models of Care for Antiretroviral Service Delivery (Cape Town: University of Cape Town, 2006), p. 8.

⁶⁷ D. Pienaar, L. Myer, S. Cleary, D. Coetzee, D. Michaels, K. Cloete, H. Schneider, and A. Boulle, Models of Care for Antiretroviral Service Delivery (Cape Town: University of Cape Town, 2006), p. 10.

⁶⁸ Interview SA003, South Africa, August 22, 2005.

⁶⁹ Naimak, op. cit., p. 13.

⁷⁰ The mission of this organization is to prevent children from becoming AIDS orphans by treating their mothers with ARVs. According to their website, “ARK funds clinical staff required for the ramp up of treatment (‘SWAT teams’), community-based adherence support (primarily through ‘patient advocates’) and the NGO team and structure to manage the programme. We also fund drugs, lab tests, infrastructure and key diagnostic equipment where necessary to prevent bottlenecks and ensure roll-out is as rapid as possible.” < http://www.arkonline.org/projects/aids_treatment/>.

⁷¹ From the PATA Conference, Cape Town, November 2005, researcher notes. Conference transcript can be downloaded from < http://www.teampata.org/proceedings.php>.

⁷² Ministry of Health, “Global Fund Gives US$15.5m to Fight Aids,” December 1, 2004, < http://www.capegateway.gov.za/eng/pubs/news/2004/dec/94257> (emphasis added).

⁷³ Geffen, op. cit.

⁷⁴ Interview SA009, August 26, 2005.

⁷⁶ Geffen, op. cit., p. 19.

⁷⁵ Geffen, op. cit., p. 13.

⁷⁷ Ashforth and Nattrass, op. cit., p. 12.

⁷⁸ Notes from Fareed Abdullah public lecture, University of Cape Town, September 23, 2005.

⁷⁹ Interestingly, key informants from the Western Cape provincial government stated that they had underestimated the importance of nutrition in the ARV program and that they should have included it in their Global Fund application. Naimak, op. cit., p. 37.

⁸⁰ Interestingly, key informants from the Western Cape provincial government stated that they had underestimated the importance of nutrition in the ARV program and that they should have included it in their Global Fund application. Naimak, op. cit.

⁸¹ Interview SA01, South Africa, September 21, 2005.

⁸² Interview SA070.

⁸³ Abdullah, op. cit., p. 250.

⁸⁴ Interview SA01.

⁸⁵ Interview SA02, South Africa, September 12, 2005.

⁸⁶ Butler, op. cit.

⁸⁷ Butler, op. cit., p. 612.

⁸⁸ Interview SA070.

⁸⁹ TAC Newsletter, September 29, 2006, < http://www.tac.org.za/nl20060929.html> (emphasis added).

⁹⁰ Andrew Meldrum, “South African Government Ends AIDS Denial,” The Guardian, October 28, 2006, < http://www.guardian.co.uk/aids/story/0,1933873,00.html> (emphasis added).

⁹¹ Andrew Meldrum, “South African Government Ends AIDS Denial,” The Guardian, October 28, 2006, < http://www.guardian.co.uk/aids/story/0,1933873,00.html> (emphasis added)

⁹² “In South Africa, A Dramatic Shift on AIDS,” op. cit.

⁹³ Meldrum, op. cit.

⁹⁴ Lionel Barber and Alec Russell, “Mbeki Seeks Ways to Limit Chaos to the North and Within,” Financial Times, April 2, 2007.

⁹⁵ TAC Newsletter, May 24, 2007, < http://www.tac.org.za/nl20070524.html>.

⁹⁶ TAC Newsletter, May 24, 2007, < http://www.tac.org.za/nl20070524.html>

⁹⁷ Daniel J. Kevles, “What's New about the Politics of Science?” Social Research 73:3 (2006), pp. 761–778, at p. 776.

⁹⁸ Nicoli Nattrass, AIDS, Science and Governance: The Battle over Antiretroviral Therapy in Post-Apartheid South Africa, ASRU Working Paper, Cape Town, 19 March 2006, < http://www.aidstruth.org/nattrass.pdf>, p. 2.

⁹⁹ Gieryn, op. cit., p. 337.

¹⁰⁰ Mandisa Mbali, “Researcher/Activist Engagements with AIDS Policy-making After the Death of Objectivity,” 8^th Annual Qualitative Methods Conference Something for Nothing, 2002, < http://criticalmethods.org/p103.mv>, p. 1.

¹⁰¹ Bawa, “Science, Power, and Policy”, op. cit., p. 616.