To Disclose or Not to Disclose, That is the Question! Antiretroviral Therapy, Access to Resources and Stigma in Southern Africa

This article discusses the increasing evidence of a dilemma facing people living with HIV and AIDS in southern Africa who are on antiretroviral therapy (ART). Their enrolment in treatment programmes gives them access to resources provided by national and international organisations, but because these resources are insufficient for their households to make ends meet, they also rely on resources available through traditional means, such as social networks. Accessing resources through enrolling in treatment programmes requires disclosure of their HIV status, while accessing resources through social networks forces them to hide their HIV infection and treatment because of the stigma attached to AIDS treatment. In addition, their neighbours' suspicion and envy of their access to outside resources compromises their access to resources through social networks. Thus, HIV-positive individuals carefully balance hiding their HIV infection in some settings with cautiously disclosing it in others in order to gain access to resources available to them both as individuals enrolled in ART and as members of local social networks. The scarcity of resources and the difficulty of access increase the need for HIV-positive individuals to carefully determine where, when and to whom to disclose their HIV status. A wrong decision potentially compromises their survival and that of their households. Notes 1 See, for example, H. Dilger and U. Luig, Morality, Hope and Grief: Anthropologies of AIDS in Africa (Oxford, Berghahn Books, 2010). *We are grateful to the anonymous readers for their comments, to Creighton University's Graduate School, which funded our research in Zimbabwe in 2009 and to T. Savory and E. Colson for their unflagging support of our ongoing research in Zambia. We are deeply indebted to Z.E. Hwalima, Director of Health and Human Services of the City of Bulawayo, and her staff, who approved and encouraged the Zimbabwean research. We acknowledge with gratitude the support we received from R. Dlodlo from the International Union Against Tuberculosis and Lung Disease. This research could not have been done without the following research assistants: E. Jiri, K. Karumbidza, C. Moonga, J. Moonga, F. Moyo, F.M. Moyo and C. Mweemba. 2 S. Reynolds Whyte, S. van der Geest and A. Hardon, Social Lives of Medicines (Cambridge, Cambridge University Press, 2002); F.G. McNeill and I. Niehaus, Magic – AIDS Review 2009 (Pretoria, Centre for the Study of AIDS, 2009). 3 P. Dlamini, T.W. Kohl, L.R. Uys, R.D. Phetlu, M.L. Chirwa, J.R. Naidoo, W.L. Holzemer, M. Greef and L.N. Makoae, ‘Verbal and Physical Neglect as Manifestations of HIV/AIDS Stigma in Five African Countries’, Public Health Nursing, 24, 5 (2007), pp. 389–99; S. Kalichman and L.C. Simbayi, ‘HIV Testing Attitudes, AIDS Stigma and Voluntary HIV Counseling and Testing in a Black Township in Cape Town, South Africa’, Sexually Transmitted Infections, 79, 6 (2003), pp. 442–47; L.C. Simbayi, S. Kalichman, A. Strebel, A. Cloete, N. Henda and A. Mqeketo, ‘Internalized Stigma, Discrimination, and Depression among Men and Women Living with HIV/AIDS in Cape Town, South Africa’, Social Science and Medicine, 64, 9 (May 2007), pp. 1,823–831; J. Stein, ‘HIV/AIDS Stigma: The Latest Dirty Secret’, African Journal of AIDS Research, 2, 1 (November 2003), pp. 95–101. 4 S.C. Watkins and A. Swidler, ‘Hearsay Ethnography: Conversational Journals as a Method of Studying Culture in Action’, Poetics, 37, 2 (April 2009), pp. 162–84. 5 R.H. Bernard, Research Methods in Anthropology: Qualitative and Quantitative Approaches (Walnut Creek, Altamira Press, 2002), pp. 322–64. 6 R.H. Bernard, Research Methods in Anthropology: Qualitative and Quantitative Approaches (Walnut Creek, Altamira Press, 2002), pp. 203–39. 7 We used Open Code 3.6, which was developed by the Department of Public Health and Clinical Medicine, Umeå University (2011), available at http://www.phmed.umu.se/english/divisions/epidemiology/research/open-code, retrieved on 4 April 2012. B. Glaser and A. Strauss, The Discovery of Grounded Theory: Strategies for Qualitative Research (Mill Valley, Sociology, 1999). 8 UNAIDS, Country Report Zambia (2011), available at http://www.unaids.org/en/regionscountries/countries/zambia/, retrieved on 4 April 2012. 9 R. Thornton, Unimagined Communities: Sex, Networks, and AIDS in Uganda and South Africa (Berkeley, University of California Press, 2008). 10 AVERT, HIV and AIDS in Zambia, available at http://www.avert.org/aids-zambia.htm, retrieved on 4 April 2012. 11 Central Intelligence Agency, The World Factbook: Zimbabwe, available at https://www.cia.gov/library/publications/the-world-factbook/geos/zi.html, retrieved on 4 April 2012. 12 United Nations General Assembly Special Session, Report on HIV and AIDS: Zimbabwe Country Report (New York, United Nations, 2010). 13 Ministry of Health and Child Welfare, Guidelines for Antiretroviral Therapy in Zimbabwe (Harare, Government of Zimbabwe, 2007); Ministry of Health and Child Welfare, Guidelines for Antiretroviral Therapy in Zimbabwe (Harare, Government of Zimbabwe, 2010). 14 Ministry of Health and Child Welfare, Zimbabwe National HIV Estimates (Harare, Government of Zimbabwe, 2009). 15 E. Frank, ‘The Relation of HIV Testing and Treatment to Identity Formation in Zambia’, African Journal of AIDS Research, 8, 4 (December 2009), pp. 515–24; E. Frank, ‘Shifting Paradigms and the Politics of AIDS’, African Studies Review, 52 (2009), pp. 33–53; A. Rödlach, Witches, Westerners and HIV: AIDS and Cultures of Blame in Africa (Walnut Creek, Left Coast Press, 2006); A. Rödlach, ‘Apocalypse Now – Interpretations of HIV/AIDS in an Urban Township in Bulawayo, Zimbabwe’, in A. Lūse and I. Lázár (eds), Cosmologies of Suffering – Post-Communist Transformations, Sacral Communication and Healing (Newcastle-upon-Tyne, Cambridge Scholars Publishing, 2007), pp. 206–29. 16 World Health Organization, Antiretroviral Drugs for Treating Pregnant Women and Preventing HIV Infection in Infants: Recommendations for a Public Health Approach (Geneva, WHO Publications, 2010). 17 Integrated Regional Information Networks, Doctors and ARVs in Short Supply, available at http://www.irinnews.org/report.aspx?reportid = 85166, retrieved on 4 April 2012; Staff reporter, ‘Economic Crisis Tough on HIV, TB’, The Standard (Harare), 14–20 June 2009, p. 14; Staff reporter, ‘Doctors and ARVs Shortage Hits Bulawayo’, The Zimbabwean (Harare), 12 July 2009, p. 17. 18 D. Skinner and S. Mfecane, ‘Stigma, Discrimination and the Implications for People Living with HIV/AIDS in South Africa’, Journal of Social Aspects of HIV/AIDS Research Alliance, 1, 3 (November 2004), pp. 157–64; L. Gilbert and L. Walker, ‘“My Biggest Fear Was That People Would Reject Me Once They Knew My Status...”: Stigma as Experienced by Patients in an HIV/AIDS Clinic in Johannesburg, South Africa’, Health & Social Care in the Community, 18, 2 (March 2010), pp. 139–46; V.A. Bond, ‘“It Is Not an Easy Decision on HIV, Especially in Zambia”: Opting for Silence, Limited Disclosure and Implicit Understanding to Retain a Wider Identity’, AIDS Care, 22, Supplement 1 (2010), pp. 6–13. 19 Central Intelligence Agency, The World Factbook: Populations Below Poverty Line (Washington, CIA, 2011), available at https://www.cia.gov/library/publications/the-world-factbook/fields/2046.html, retrieved on 4 April 2012. 20 Central Intelligence Agency, The World Factbook: Zimbabwe. 21 Central Intelligence Agency, The World Factbook: Zimbabwe 22 Integrated Regional Information Networks, Zimbabwe: Remittances Saved the Country from Collapse (2010), available at http://www.irinnews.org/report.aspx?reportid = 83053, retrieved on 4 April 2012. 23 CIA, The World Factbook: Zambia. 24 For example: E. Colson, ‘Resilience as a Way of Life in Gwembe Valley’, Working Paper on Social-Ecological Resilience Series (Kyoto, Research Institute for Humanity and Nature, 2011). 25 For example: E. Colson, ‘Resilience as a Way of Life in Gwembe Valley’, Working Paper on Social-Ecological Resilience Series (Kyoto, Research Institute for Humanity and Nature, 2011) 26 We do not want to give the impression that there is no evidence that people provide support without expecting something in return. Behaviour relating to market values and selfish pursuit of options is but one among many types of behaviour found within community life in the fourth decade of the HIV/AIDS pandemic. In both countries, we encountered many voluntary home-based caregivers, individuals involved in the social ministries of their respective church communities, neighbours concerned with the well-being of others and nurses and AIDS counsellors committed to providing selfless service. We have argued this elsewhere, see, for example, A. Rödlach, ‘Religious Institutions and Volunteering to Provide Care to People Living with HIV and AIDS in Zimbabwe’, Journal of Religion and Society, Supplement 7, pp. 198–215. Here we highlight a different dynamic that is often concurrently at work and at times competing with compassion and selfless care, though in different contexts with varying emphases. 27 McNeill also observes that among the South African Venda the access to outside resources available to people on ART is viewed with suspicion by others: F. McNeill, ‘Venda: Magic? Talking about Treatment’, in F. McNeill and I. Niehaus (eds), Magic – AIDS Review 2009 (Pretoria, Centre for the Study of AIDS, 2009), pp. 59–114, p. 102. 28 This echoes what McNeill observed. He reports that people on ART are thought by some to be zombies who have died but returned to life through treatment: McNeill, ‘Venda: Magic?’, p. 85. 29 Various studies conclude that the desirability of a pregnancy often outweighs considerations of the danger of HIV infection, for example, as argued in: N. Rutenberg, C.E. Kaufman, K. Macintyre, L. Brown and A. Karim, ‘Pregnant or Positive: Adolescent Childbearing and HIV Risk in KwaZulu Natal, South Africa’, Reproductive Health Matters, 11, 22 (2003), pp. 122–33. See also A. Young, ‘In Sorrow to Bring Forth Children: Fertility Amidst the Plague of HIV’, Journal of Economic Growth, 12, 4 (December 2007), pp. 283–327. 30 J.S. Stringer, I. Zulu, J. Levy, E.M. Stringer, A. Mwango, B.H. Chi, V. Mtonga, S. Reid, R.A. Cantrell, M. Bulterys, M.S. Saaq, R.G. Marlink, A. Mwinga, T.V. Ellerbrock and M. Sinkala, ‘Rapid Scale-Up of Antiretroviral Therapy at Primary Care Sites in Zambia: Feasibility and Early Outcomes’, Journal of the American Medical Association, 297, 7 (2006), pp. 782–93. 31 AVERT, HIV and AIDS in Zambia; World Health Organisation, Antiretroviral Drugs for Treating Pregnant Women and Preventing HIV Infection in Infants; Ministry of Health and Child Welfare, Guidelines for Antiretroviral Therapy in Zimbabwe (2010). 32 V-K. Nguyen, The Republic of Therapy: Biopolitics Before and After HIV in French West Africa (Durham, NC, Duke University Press, 2007

Expanded access · Scarcity · Social stigma · Stigma · Adolescent Sexual and Reproductive Health · HIV/AIDS Research and Interventions · Poverty, Education, and Child Welfare

• Bewitching sex workers, blaming wives

  Open Access•Elizabeth J Pfeiffer, Harrison M K Maithya•Global Public Health•2016

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