- Email: [email protected]
Beyond stigma: social responses to HIV in South Africa
Comment
comparable scores. Corresponding assessment of military expenditures indicate that absolute military expenditures are 3·9-fold higher in the 13 highest recipient countries (including China) than in the 26 lowest recipients (mean annual military expenditure US$5·7 vs $1·5 billion) and proportional government funding for health lower among the major GFATM funding recipients (45·0% vs 57·1%, figure 2).9,12,13 Notwithstanding the above considerations, the GFATM must be congratulated for the degree of openness in sharing the information on the process and disbursal of funds. I look forward to additional independent evaluations of the effect of GFATM funding on health outcomes, equity indicators, and overall health-sector financing. Zulfiqar A Bhutta Department of Paediatrics and Child Health, Aga Khan University, Karachi 74800, Pakistan zulfi[email protected] I declare that I have no conflict of interest. 1
Lu C, Michaud CM, Khan K, Murray CLJ. Absorptive capacity and disbursements by the Global Fund to Fight AIDS, Tuberculosis and Malaria: analysis of grant implementation. Lancet 2006; 368: 483-88.
2
Filmer D, Pritchett L. The impact of public spending on health: does money matter? Soc Sci Med 1999; 49: 1309–23. 3 Burnside C, Dollar D. Aid, policies, and growth. Policy research working paper 1777. Washington, DC: World Bank, Policy Research Department, Macroeconomics and Growth Division, 1997. 4 Schieber G, Baeza C, Kress D, Maier M. Financing health systems in the 21st century. In: Jamison DT, Breman JG, Measham AR, et al, eds. Disease control priorities in developing countries, 2nd edn. New York: Oxford University Press, 2006. 5 Ensor, T, Cooper S. Overcoming barriers to health service access: influencing the demand side. Health Policy Plan 2004; 9: 69–79. 6 Attaran A, Barnes KI, Curtis C, et al. WHO, the Global Fund, and medical malpractice in malaria treatment. Lancet 2004; 363: 237–40. 7 Gupta S, Clements BJ, Pivovarsky A, Tiongson ER. Foreign aid and revenue response: does the composition of aid matter? In: Gupta S, Clements BJ, Inchauste G, eds. Helping countries develop: the role of fiscal policy. Washington, DC: International Monetary Fund, 2004: 385–406. 8 Tandon A. Attaining millennium development goals for health: isn’t economic growth enough? ERD policy brief number 35. Manila: Asian Development Bank, 2005. 9 WHO. Statistical information system. 2006: http://www3.who.int/whosis/ core/core_select.cfm (accessed July 17, 2006). 10 Kaufmann D, Kraay A, Mastruzzi M. Governance matters IV: governance indicators for 1996–2004. The World Bank policy research working paper 3630, June, 2005: http://www.worldbank.org/wbi/governance/govdata (accessed July 14, 2006). 11 Hargreaves S. Time to right the wrongs: improving basic health care in Nigeria. Lancet 2002; 359: 2030–35. 12 Lambsdorff JG. The methodology of the 2005 corruption perceptions index. September, 2005: http://ww1.transparency.org/cpi/2005/cpi2005_infocus. html#cpi (accessed July 11,2006). 13 Center for Arms Control and Non-proliferation. US Military spending versus the world. http://www.armscontrolcenter.org/archives/002244.php (accessed July 11, 2006).
Beyond stigma: social responses to HIV in South Africa 6 years ago, the International AIDS Conference was held in Durban, South Africa, shortly after the hate-crime murder of a young HIV-positive woman, Gugu Dhlamini.1 The enormity of this act gave Gugu a special place in the history of the epidemic, and in South Africa she has come to epitomise HIV stigma at its most cruel. Since her death, international attention to HIV-related stigma has grown and has been translated into a burgeoning literature of science and activism that describes, measures, and comments on the social exclusion of people with HIV/AIDS. Whilst driven by a central preoccupation to change singularly distressing and harmful responses to HIV/AIDS, this work has been characterised by a central weakness: a failure to take a serious look at the divergent nature of these social responses, particularly in sub-Saharan Africa. Much has changed in South Africa during the course of the epidemic, and particularly in the past 8 years. Not only have more people become infected with HIV,2 but many so-called invisible HIV infections have become 430
apparent after progression to AIDS. As a result, in much of the country, every family, street, church, workplace, and community has become, often painfully, aware that among them are people with HIV/AIDS. To map changes in the prevalence of social exclusion related to HIV in South Africa is difficult because of an absence of data, but social responses may have, at least, diversified. A national survey concluded that the prevalence of stigmatising attitudes overall was low,3 lending support to smaller-scale research findings from Cape Town4 as well as those from long-term ethnographic research in the small town of Mthatha.5 Indeed, as a researcher working in rural areas and a participant in South African society, I have seen that, when faced with the reality of HIV as the disease of a brother, mother, daughter, husband, uncle, colleague, or school friend, Africans from all social positions often regard it as a normal misfortune. Without empirical focus on the range of social responses, it has been impossible to properly address the critical question: what drives this type of change in attitude? Analysis of the different ways in www.thelancet.com Vol 368 August 5, 2006
Comment
normalisation of HIV/AIDS. This idea is not intended to imply in any sense a denial of the enormous social and health effects of this disease, but to suggest that, in a social environment where family and communities are familiar with illness, death, and other misfortune, HIV/AIDS has become part of the repertoire of normal misfortune. Normalisation has started as a bottom-up response, emerging from poor African families and communities. The process presents substantial opportunities for rolling back the remaining discrimination against people with HIV/AIDS, but at the same time profoundly challenges much of our thinking about HIV/AIDS and responses to the epidemic.
We do not have the rights to reproduce this image on the web.
AP
which Africans are negotiating and coming to terms with a world that is increasingly affected by HIV is impossible. A predominant focus on stigma might thus have negatively influenced our ability to develop interventions to reduce stigma. These interventions have mostly emphasised building knowledge of HIV, challenging attitudes, and antidiscrimination legislation. These approaches are limited, because educational interventions have little effect on stigma,6 and legislation generally has little effect on private life. If the focus shifts, we could provide positive role-modelling in care and support, and, in so doing, shift discourse from the negative (this is what we do, and it is wrong) to the empowering (this is what we do, we care for people with HIV/AIDS). Such approaches have been notably absent from discussion of strategies for stigma reduction (eg, Campbell and co-workers7) and fit much better with established theories of behaviour change, as well as with contemporary political imperatives to end the propagation of negative stereotypes of black Africans. Stigma and fear of stigma are well-recognised barriers to HIV testing, disclosure, and treatment seeking but unless we have a more nuanced approach to understanding stigma, differentiation between external stigma and self-stigmatisation will be difficult. Although these forms of stigma are related, the strategies needed to overcome them are different. Unless both types are independently and appropriately addressed, people with HIV will not fully benefit from the developments in medical interventions for people with AIDS, including antiretroviral therapy. South Africa has entered a phase of the epidemic that is marked by divergence in social response and increasing
Rachel Jewkes Gender and Health Research Unit, Medical Research Council, Pretoria 0001, South Africa [email protected] I declare that I have no conflict of interest. 1
2
3
4
5
6 7
Cameron E. The deafening silence of AIDS. Plenary presentation at 13th International AIDS Conference, Durban, South Africa. July 10, 2000: http://www.actupny.org/reports/durban-cameron.html (accessed July, 21, 2006). South Africa Department of Health. National HIV and syphilis antenatal sero-prevalence survey in South Africa 2004. Pretoria: South African National Department of Health, 2005. Shisana O, Rehle T, Simbayi LC, et al. South African national HIV prevalence, HIV incidence, behaviour and communication survey, 2005. Cape Town: Human Sciences Research Council, 2005. Kalichman SC, Simbayi LC, Jooste S, et al. Development of a brief scale to measure AIDS-related stigma in South Africa. AIDS Behav 2005; 9: 135–43. Wood K. An ethnography of sexual health and violence among township youth in South Africa. PhD thesis, London School of Hygiene and Tropical Medicine, 2003. Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned. AIDS Educ Prev 2003: 15: 49–69. Campbell C, Foulis CA, Maimane S, Sibiya Z. “I have an evil child at my house”: stigma and HIV/AIDS management in a South African community. Am J Public Health 2005; 95: 808–15.
Microbicides: stopping HIV at the gate For 4 days in April, 2006, 1300 scientists, funders, policymakers, and activists from all over the world attended the Microbicides 2006 Conference in Cape Town, South Africa, to discuss the latest research findings, exchange information, and consider future directions in developing microbicides for preventing the sexual transmission of HIV.1 This conference was the largest such gathering ever, and the conference location in sub-Saharan Africa, which has seen 77% of the world’s AIDS deaths and is home to some two-thirds of all people living with HIV,2 vividly reminded participants of the misery and devastation wrought by this virus. www.thelancet.com Vol 368 August 5, 2006
The global HIV/AIDS epidemic continues largely unchecked2 and hopes of developing a preventive vaccine in the near future look increasingly remote. Condoms can provide a high level of protection against the sexual transmission of HIV if used correctly and consistently, but the truth is that many women lack the social or economic power to persuade their partners to use them. These facts have highlighted the importance of efforts to develop other approaches to prevention, especially female-controlled measures, including microbicides. Microbicides are antimicrobial medications formulated for vaginal administration to prevent the transmission of 431
comparable scores. Corresponding assessment of military expenditures indicate that absolute military expenditures are 3·9-fold higher in the 13 highest recipient countries (including China) than in the 26 lowest recipients (mean annual military expenditure US$5·7 vs $1·5 billion) and proportional government funding for health lower among the major GFATM funding recipients (45·0% vs 57·1%, figure 2).9,12,13 Notwithstanding the above considerations, the GFATM must be congratulated for the degree of openness in sharing the information on the process and disbursal of funds. I look forward to additional independent evaluations of the effect of GFATM funding on health outcomes, equity indicators, and overall health-sector financing. Zulfiqar A Bhutta Department of Paediatrics and Child Health, Aga Khan University, Karachi 74800, Pakistan zulfi[email protected] I declare that I have no conflict of interest. 1
Lu C, Michaud CM, Khan K, Murray CLJ. Absorptive capacity and disbursements by the Global Fund to Fight AIDS, Tuberculosis and Malaria: analysis of grant implementation. Lancet 2006; 368: 483-88.
2
Filmer D, Pritchett L. The impact of public spending on health: does money matter? Soc Sci Med 1999; 49: 1309–23. 3 Burnside C, Dollar D. Aid, policies, and growth. Policy research working paper 1777. Washington, DC: World Bank, Policy Research Department, Macroeconomics and Growth Division, 1997. 4 Schieber G, Baeza C, Kress D, Maier M. Financing health systems in the 21st century. In: Jamison DT, Breman JG, Measham AR, et al, eds. Disease control priorities in developing countries, 2nd edn. New York: Oxford University Press, 2006. 5 Ensor, T, Cooper S. Overcoming barriers to health service access: influencing the demand side. Health Policy Plan 2004; 9: 69–79. 6 Attaran A, Barnes KI, Curtis C, et al. WHO, the Global Fund, and medical malpractice in malaria treatment. Lancet 2004; 363: 237–40. 7 Gupta S, Clements BJ, Pivovarsky A, Tiongson ER. Foreign aid and revenue response: does the composition of aid matter? In: Gupta S, Clements BJ, Inchauste G, eds. Helping countries develop: the role of fiscal policy. Washington, DC: International Monetary Fund, 2004: 385–406. 8 Tandon A. Attaining millennium development goals for health: isn’t economic growth enough? ERD policy brief number 35. Manila: Asian Development Bank, 2005. 9 WHO. Statistical information system. 2006: http://www3.who.int/whosis/ core/core_select.cfm (accessed July 17, 2006). 10 Kaufmann D, Kraay A, Mastruzzi M. Governance matters IV: governance indicators for 1996–2004. The World Bank policy research working paper 3630, June, 2005: http://www.worldbank.org/wbi/governance/govdata (accessed July 14, 2006). 11 Hargreaves S. Time to right the wrongs: improving basic health care in Nigeria. Lancet 2002; 359: 2030–35. 12 Lambsdorff JG. The methodology of the 2005 corruption perceptions index. September, 2005: http://ww1.transparency.org/cpi/2005/cpi2005_infocus. html#cpi (accessed July 11,2006). 13 Center for Arms Control and Non-proliferation. US Military spending versus the world. http://www.armscontrolcenter.org/archives/002244.php (accessed July 11, 2006).
Beyond stigma: social responses to HIV in South Africa 6 years ago, the International AIDS Conference was held in Durban, South Africa, shortly after the hate-crime murder of a young HIV-positive woman, Gugu Dhlamini.1 The enormity of this act gave Gugu a special place in the history of the epidemic, and in South Africa she has come to epitomise HIV stigma at its most cruel. Since her death, international attention to HIV-related stigma has grown and has been translated into a burgeoning literature of science and activism that describes, measures, and comments on the social exclusion of people with HIV/AIDS. Whilst driven by a central preoccupation to change singularly distressing and harmful responses to HIV/AIDS, this work has been characterised by a central weakness: a failure to take a serious look at the divergent nature of these social responses, particularly in sub-Saharan Africa. Much has changed in South Africa during the course of the epidemic, and particularly in the past 8 years. Not only have more people become infected with HIV,2 but many so-called invisible HIV infections have become 430
apparent after progression to AIDS. As a result, in much of the country, every family, street, church, workplace, and community has become, often painfully, aware that among them are people with HIV/AIDS. To map changes in the prevalence of social exclusion related to HIV in South Africa is difficult because of an absence of data, but social responses may have, at least, diversified. A national survey concluded that the prevalence of stigmatising attitudes overall was low,3 lending support to smaller-scale research findings from Cape Town4 as well as those from long-term ethnographic research in the small town of Mthatha.5 Indeed, as a researcher working in rural areas and a participant in South African society, I have seen that, when faced with the reality of HIV as the disease of a brother, mother, daughter, husband, uncle, colleague, or school friend, Africans from all social positions often regard it as a normal misfortune. Without empirical focus on the range of social responses, it has been impossible to properly address the critical question: what drives this type of change in attitude? Analysis of the different ways in www.thelancet.com Vol 368 August 5, 2006
Comment
normalisation of HIV/AIDS. This idea is not intended to imply in any sense a denial of the enormous social and health effects of this disease, but to suggest that, in a social environment where family and communities are familiar with illness, death, and other misfortune, HIV/AIDS has become part of the repertoire of normal misfortune. Normalisation has started as a bottom-up response, emerging from poor African families and communities. The process presents substantial opportunities for rolling back the remaining discrimination against people with HIV/AIDS, but at the same time profoundly challenges much of our thinking about HIV/AIDS and responses to the epidemic.
We do not have the rights to reproduce this image on the web.
AP
which Africans are negotiating and coming to terms with a world that is increasingly affected by HIV is impossible. A predominant focus on stigma might thus have negatively influenced our ability to develop interventions to reduce stigma. These interventions have mostly emphasised building knowledge of HIV, challenging attitudes, and antidiscrimination legislation. These approaches are limited, because educational interventions have little effect on stigma,6 and legislation generally has little effect on private life. If the focus shifts, we could provide positive role-modelling in care and support, and, in so doing, shift discourse from the negative (this is what we do, and it is wrong) to the empowering (this is what we do, we care for people with HIV/AIDS). Such approaches have been notably absent from discussion of strategies for stigma reduction (eg, Campbell and co-workers7) and fit much better with established theories of behaviour change, as well as with contemporary political imperatives to end the propagation of negative stereotypes of black Africans. Stigma and fear of stigma are well-recognised barriers to HIV testing, disclosure, and treatment seeking but unless we have a more nuanced approach to understanding stigma, differentiation between external stigma and self-stigmatisation will be difficult. Although these forms of stigma are related, the strategies needed to overcome them are different. Unless both types are independently and appropriately addressed, people with HIV will not fully benefit from the developments in medical interventions for people with AIDS, including antiretroviral therapy. South Africa has entered a phase of the epidemic that is marked by divergence in social response and increasing
Rachel Jewkes Gender and Health Research Unit, Medical Research Council, Pretoria 0001, South Africa [email protected] I declare that I have no conflict of interest. 1
2
3
4
5
6 7
Cameron E. The deafening silence of AIDS. Plenary presentation at 13th International AIDS Conference, Durban, South Africa. July 10, 2000: http://www.actupny.org/reports/durban-cameron.html (accessed July, 21, 2006). South Africa Department of Health. National HIV and syphilis antenatal sero-prevalence survey in South Africa 2004. Pretoria: South African National Department of Health, 2005. Shisana O, Rehle T, Simbayi LC, et al. South African national HIV prevalence, HIV incidence, behaviour and communication survey, 2005. Cape Town: Human Sciences Research Council, 2005. Kalichman SC, Simbayi LC, Jooste S, et al. Development of a brief scale to measure AIDS-related stigma in South Africa. AIDS Behav 2005; 9: 135–43. Wood K. An ethnography of sexual health and violence among township youth in South Africa. PhD thesis, London School of Hygiene and Tropical Medicine, 2003. Brown L, Macintyre K, Trujillo L. Interventions to reduce HIV/AIDS stigma: what have we learned. AIDS Educ Prev 2003: 15: 49–69. Campbell C, Foulis CA, Maimane S, Sibiya Z. “I have an evil child at my house”: stigma and HIV/AIDS management in a South African community. Am J Public Health 2005; 95: 808–15.
Microbicides: stopping HIV at the gate For 4 days in April, 2006, 1300 scientists, funders, policymakers, and activists from all over the world attended the Microbicides 2006 Conference in Cape Town, South Africa, to discuss the latest research findings, exchange information, and consider future directions in developing microbicides for preventing the sexual transmission of HIV.1 This conference was the largest such gathering ever, and the conference location in sub-Saharan Africa, which has seen 77% of the world’s AIDS deaths and is home to some two-thirds of all people living with HIV,2 vividly reminded participants of the misery and devastation wrought by this virus. www.thelancet.com Vol 368 August 5, 2006
The global HIV/AIDS epidemic continues largely unchecked2 and hopes of developing a preventive vaccine in the near future look increasingly remote. Condoms can provide a high level of protection against the sexual transmission of HIV if used correctly and consistently, but the truth is that many women lack the social or economic power to persuade their partners to use them. These facts have highlighted the importance of efforts to develop other approaches to prevention, especially female-controlled measures, including microbicides. Microbicides are antimicrobial medications formulated for vaginal administration to prevent the transmission of 431