South African AIDS Activism and Global Health Politics

M. Mbali

• Publisher: Palgrave Macmillan
• Year: 2013
• Print ISBN: 9781349347995, 9780230360624
• eBook ISBN: 9781137312167
• Topic: Social Sciences
• Subtopic: Social Policy
• Index: Social Sciences

South Africa has the world's largest number of people living with HIV. This book offers a history of AIDS activism in South Africa from its origins in gay and anti-apartheid activism to the formation and consolidation of the Treatment Action Campaign (TAC), including its central role in the global HIV treatment access movement.

Part I

AIDS Activism and South Africa’s Transition

1

Health for All? Healthworker AIDS Activism, 1982–1994

Introduction

In July 1990, Mervyn Susser gave the keynote address at a gathering of anti-apartheid physicians in Durban just over five months after struggle-icon Nelson Mandela had made history in Cape Town by taking his first steps as a free man in 27 years. The South African anti-apartheid physician and epidemiologist was in his element: he had been a long-time supporter of desegregated social medicine, and he and his wife Zena Stein had left the country in the mid-1950s shortly after he had been fired from Alexandra Clinic because of his association with the African National Congress (ANC). He was now a professor at Columbia University in New York, but he knew Durban well as he and Stein had visited it on a number of occasions in the late 1940s and early 1950s. Susser’s elation at the possibility of a democratic transition in South Africa was tempered, however, by his awareness of a disturbing new trend: the continent of Africa was being ravaged by the epidemic of AIDS, a new, lethal sexually transmitted disease (STD). In Uganda it had been referred to as ‘Slim disease’, and it was obvious that most new cases were among heterosexual people in African countries, where it had been identified. A terrifying vision lay in his mind’s eye: AIDS was going to be a ‘conflagration’ on the continent of Africa, one which would be on a par with the syphilis epidemic in sixteenth-century Europe, and South Africa lay as dry kindling before its flames (Interview 7 August 2003).

These calculations lay behind his warning to the assembled anti-apartheid healthworkers that South Africa’s AIDS epidemic could turn into a catastrophe and that there was ‘little time to act’.¹ While antenatal clinic surveys had shown an infection rate of under 1%, this was not an indication of things to come: the rate of infections was doubling every 8.4 months, and within four years infection rates in Johannesburg would exceed Kampala’s, where one in four adults were infected with the virus.² Susser said that a combination of biological and behavioural changes would eventually ‘bring the pandemic into a steady balanced state’, but at that time epidemiologists did not ‘have long enough experience’ to predict what levels infection rates would reach before this would happen.³ So, Susser pronounced, with ‘professional deliberation as an epidemiologist’, that the epidemic was an emergency for the country, which needed to be politically prioritized.⁴ Indeed, nothing short of ‘a social movement on a national scale’ could hope to stem the tide of the advancing epidemic.⁵

This chapter traces how anti-apartheid healthworker activists such as Susser – who commonly referred to themselves as ‘progressive’ healthworker activists – took up the issue of AIDS in the early 1990s. It describes how the first National AIDS Plan (NAP) was shaped by two groups of healthworker activists: those who were internally based, and externally based anti-apartheid physicians, such as Susser, who had seen and learnt about the disease abroad. It then focuses on their engagements with internally based gay AIDS activists, such as Edwin Cameron, who demanded human rights-based policies in relation to the epidemic.

In this chapter, I argue that ‘progressive healthworkers’ were central to the development of AIDS activism from an early period, by virtue of their professional experiences and expertise in relation to the disease. But it is also important not to overstate healthworker activists’ prioritization of AIDS in the period. While AIDS was a small, but growing, issue for some healthworker activists, ending apartheid and ensuring that there would be a desegregated post-apartheid national health system remained their primary projects.

The chapter opens with an analysis of how internally based healthworker activists’ responses to the epidemic were shaped by both their early professional engagement with the epidemic and their adherence to the old idea of community-orientated primary health care (PHC). It shows how their political orientation as progressive healthworkers meant that they supported the older idea of PHC, which motivated them to disseminate their knowledge about AIDS more widely in ‘communities’. The chapter’s second section analyses how the return of ANC exiles and the end of South Africa’s international isolation facilitated greater contact between anti-apartheid physicians who had been trained abroad and those who had remained in the country, and enabled them to share ideas about how to tackle AIDS. Its third section then looks at how the political transition and the concomitant reintegration of South Africa into the international community enabled the government and ANC to collaborate on developing the first NAP with technical inputs from WHO. The final section of the chapter explores how the first NAP included human rights language at the insistence of the AIDS Consortium, an approach supported by the ANC which had an interest in combatting calls for returning exiles to undergo mandatory testing. This chapter will now turn to an analysis of how internally based progressive healthworker AIDS activism drew on the social medicine-related idea of PHC.

Primary health care in healthworker AIDS activism

Like many healthworker activists, Mervyn Susser’s thinking on AIDS-related planning – and health policy in general – was profoundly influenced by the concept of PHC, which, in a South African context, could be traced back to the work of Sidney and Emily Kark in the 1930s. In 1939, the union government established three experimental health centres in the ‘Native Reserves’ focused on health education and the prevention and treatment of disease (Kark and Kark 1999). The South African government’s thinking in this regard doubtlessly drew on that of their British counterparts who were in the earliest stages of planning to introduce a unified national health service (NHS). Sidney and Emily Kark’s Pholela Health Unit was the first of the South African health centres in the country’s native reserves. At this health unit they pioneered a new model of community-orientated PHC. They aimed to provide an alternative to medicine that was solely hospital-based and curative in focus by emphasizing disease prevention and the local provision of health care. Their programmes in Pholela were also implemented by ordinary community members who were trained as health assistants.

PHC, as implemented by the Karks, drew on ‘social medicine’, a body of thought that dated back to the late nineteenth century. The concept originated in the thinking of Rudolf Virchow, a physician, anthropologist and politician, who worked in Biskmarck’s Germany. He held that diseases were never purely biological in nature: instead, they emerged from the social context in which patients lived (McNeely 2002). Simply put, for Virchow there were firm causal links between poverty and ill health. Virchow’s social medicine, therefore, positioned physicians as the ideal advocates for the well-being of the poor. He also called for state funding so that they could provide free medical services to the disadvantaged (Harrison 2004).

Over the next few years, the Karks’ model of community-orientated PHC exercised an increasing influence over government policy. In 1944, the Gluckman Commission recommended that more local health centres be established and that they be combined with hospitals into a nationalized hospital system to comprise a health service along the same lines as that being proposed in Britain (Porter 1999; Susser 1999; Susser 2006). A year later, the Karks moved to Durban to head up a new Institute for Family and Community Health to train health assistants for newly established health centres. But the proposal for a South African NHS faded into the distance after the National Party’s 1948 ascension to power, which enabled it to implement its apartheid ideology (Susser 1999). For decades thereafter, hospitals remained segregated and ‘diseases of poverty’ became ever more entrenched among Africans (Digby 2008).

Despite these setbacks, the dream of free health care for all, with special emphases on disease prevention and maternal and child health care, continued to animate the anti-apartheid struggle within South Africa. In 1955, the Freedom Charter was adopted at the Congress of the People, which included representatives of the ANC, the South African Indian Congress, the Coloured People’s Congress and the Congress of Democrats. The charter had no less than three clauses dealing with health in a post-apartheid South Africa, in a section entitled ‘There Shall Be Houses, Security and Comfort!’⁶

The Natal University Medical School (founded in 1950) became an important space for the politicization of a younger generation of black anti-apartheid activists despite the fact that only Africans, coloureds and Indians could attend it. It attracted a distinguished, mostly white staff and a high concentration of the young black intellectual elite. This was a combination that made the medical school a critical space in terms of the politicization of the young, black intelligentsia (Ramphele 1995; Noble 2005). Durban’s Medical School was one of the incubators of the Black Consciousness (BC) movement, and Stephen Bantu Biko, the movement’s founder, was a student there. Doctors opposed to apartheid decried two physicians’ collusion in the activist’s torture and mistreatment which led to his death in detention in 1977 (Baldwin-Ragaven et al. 1999). Biko’s death also deepened anti-apartheid physicians’ antipathy towards the Medical Association of South Africa (MASA), which like the South African Medical and Dental Council (SAMDC), did not censure Biko’s doctors for their failure to carry out their ethical and professional duties while attending to him (Baldwin-Ragaven et al. 1999).

All of this occurred at a time when the idea of community-orientated PHC was gaining increasing traction at WHO (Kark and Kark 1999). While the Karks had been early developers of this idea and had also promoted it during their time at WHO, it was also shaped by the ‘barefoot doctors’ of China and NGOs and medical missionaries across the ‘Third World’ (Brown et al. 2006). PHC was the focus of the Declaration of Alma-Ata, which was unanimously adopted by WHO member states in September 1978. The declaration emphasized the importance of community participation in health planning, disease prevention and health promotion, collaboration between health and development programmes and local provision of health care. It also, famously, called for ‘Health for All’ by the year 2000 (WHO 1978). Needless to say, the goals of Alma-Ata were not met. This was due to a number of factors, which included the global rise of the Washington Consensus approach to economics from the late 1970s and the successful promotion of market-based health care provision by the Rockefeller Foundation and a much reduced set of technical interventions by UNICEF, the World Bank and WHO. This approach was referred to as ‘Selective Primary Health Care’ (Hall and Taylor 2003; Brown et al. 2006). South African health policy was also influenced by these international developments, and from the late 1970s, the government promoted private sector provision of health care to contain costs to the state. However, such privatization barely dented racial disparities in access to quality health care: by 1986, while between 70% and 75% of the white population benefitted from medical aid membership (health insurance coverage), just under 4% of Africans enjoyed such privileges (Price 1989, p. 126). Indeed, most Africans continued to use drastically overcrowded state facilities designated for ‘non-whites’. In this context, health activists in the country continued to refer to the Declaration of Alma-Ata in a positive light, as is evident in an early leaflet outlining the goals and activities of the PPHC network which alluded to its goal of ‘Health Care for All by 2000’.⁷

In the eyes of doctors who were opposed to apartheid, MASA and the SAMDC had failed to address human rights abuses in the provision of health care, so they set up their own alternative association called the National Medical and Dental Association (NAMDA) in 1982 (Baldwin-Ragaven et al. 1999). NAMDA members researched and publicized the effects of apartheid on health, pressed for the desegregation of the health system and provided health services and first aid training through affiliated entities such as the Emergency Services Group (ESG). Throughout this period, PHC continued to be one of healthworker activism’s guiding ideas. Indeed, in 1987 NAMDA convened meetings of healthworker activists and organizations which culminated in the formation of the PPHC network in September of that year.

So when AIDS entered their professional lives, South African healthworker activists were politically focused on an end to apartheid and ‘health for all’. For instance, in this period, Hoosen ‘Jerry’ Coovadia, a Natal University-trained paediatrician was a firm NAMDA supporter. The Durban-based doctor saw his first AIDS patients in 1989. For most of the 1980s, he knew about AIDS ‘academically’ by virtue of his profession, but he told me that he thought of it as a ‘white male epidemic mostly in Johannesburg’ (Interview 3 September 2003). In the late 1980s and early 1990s, he was engrossed in the more quotidian diseases seen by a paediatrician in the public sector of the health system: diarrhoea, tuberculosis and malnutrition. In this period, he saw ‘a few patients’ and gained a ‘nodding acquaintance’ with the disease, and his colleagues ‘spent a lot of time, maybe a whole five years until the mid-90s trying to become familiar with the symptoms’. By contrast, at the 1987 NAMDA conference he was voluble on the topic of the need for a desegregated, equitable NHS in South Africa: for a ‘transition from racist, capitalist, exploitative medicine into socialized health care’ and from a hospital-based, cure-centred heath system to a community-based preventive-focused one (Coovadia 1988, p. 11).

By the end of the 1980s, some healthworker activists were, however, starting to hold informal, regional meetings on AIDS. For example, on 30 October 1988 an ad hoc Southern Transvaal PPHC AIDS forum met for the first time at the Centre for the Study of Health Policy at Wits University. Representatives from 16 different organizations attended the meeting which PPHC activists set up so that they could share information on their ‘AIDS work’ with each other.⁸ They were also told about ‘AIDS efforts in [the rest of] Africa and among minority groups in the United States’ and discussed ‘which policy issues needed to be addressed’.⁹ AIDS was only one of the issues the PPHC network addressed at the group’s second meeting, held on 8 April 1989, and it was by no means the most prominent: in the Southern Transvaal it also held workshops on the ‘relationship between health and politics’ and ‘informal settlements’.¹⁰

Meanwhile, according to Thoko Makhanya, a nurse-educator at King Edward VIII hospital, a PPHC AIDS-related network was also created in Natal in 1988 (Interview 13 September 2007). Similarly, a network was formed in the Western Cape in August 1989 which aimed to ‘pull together organizations who support the PPHC [network]’ and to ‘lobby the state and challenge their AIDS strategy’.¹¹ The Western Cape PPHC AIDS Forum was very actively involved in both advocacy and awareness raising. On the advocacy front, it wrote a letter to the Ministry of Health critiquing their pamphlets and their newspaper campaigns.¹² It was also in negotiations with the Congress of South African Trade Unions (COSATU) and the United Democratic Front (UDF) to collaborate with them on AIDS.¹³ To raise awareness, they produced a pamphlet for the 1989 World AIDS Day and gave talks at schools.

In August 1990, a US congressman, Jim McDermott, visited South Africa to explore which AIDS projects he wanted to recommend for USAID funding. PPHC assisted the ANC in preparing a submission for the Democrat on its position on the epidemic and its recommendations for new programmes which could be developed with US funding. In the document, PPHC claimed that its AIDS forums involved ‘more or less 80% of AIDS activists’.¹⁴ This was a deeply significant development in that anti-apartheid activists of various types discussed in this book had previously referred to themselves as gay or progressive health activists interested in, or working on, AIDS. Their new self-definition as ‘AIDS activists’ indicated that they saw their political goals and identities as crucially linked to their efforts to limit new HIV infections and improve the well-being of those who were already living with the virus.

By September 1990, these voluntary AIDS forums organized by healthworker activists had crystallized into the PPHC’s AIDS Working Group.¹⁵ The PPHC network developed an AIDS programme driven by community AIDS workers. These were frequently not health professionals but rather people who lived in the areas where they worked or who had ex...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• List of Figures
• Acknowledgements
• A Note on Racial Terms
• List of Acronyms and Abbreviations
• Introduction: South African AIDS Activism and Global Health Justice
• Part I: AIDS Activism and South Africa’s Transition
• Part II: The TAC and Global Health Politics
• Notes
• Bibliography
• Timeline
• Index