The Extraordinary ‘Ordinary’:The Campaign for Comprehensive AIDS Treatment in South Africa
Steven Friedman
Johannesburg, South Africa
Web Version
September, 2007
This paper was prepared for the project on Citizen Engagement and National Policy Change, coordinated by John Gaventa at the Institute of Development Studies and Gary Hawes, of the Ford Foundation. We are grateful to the Ford Foundation for its support. We anticipate that shorter versions of the papers will be forthcoming as a printed volume.
Other papers in the series include:
Cultural Adaptations: The Moroccan Women’s Campaign to Change the Moudawana
Is Knowledge Power? The Right to Information Campaign in India
Mexico Case Study: Civil Society and the Struggle to Reduce Maternal Mortality
Protecting the Child: Civil Society and the State in Chile
Reforming the Penal Code in Turkey: The Campaign for the Reform of the Turkish Penal Code from a Gender Perspective
The National Campaign for Land Reform in the Philippines
Urban Reform, Participation and the Right to the City in Brazil
The Extraordinary ‘Ordinary’:
The Campaign for Comprehensive AIDS Treatment in South Africa
The fight for a comprehensive government response to HIV and AIDS is one of the more significantsagas of post-apartheid South Africa – and one of the strangest.
The campaign is justifiably seen as the clearest evidence thus far that citizen action can change policy in the new South African democracy. Popular mobilisation played a major role in ending racial minority rule. But most of the organisations which led this revolt were loyal to the African National Congress (ANC), the world’s oldest national liberation movement, which was formed in 1912 and became the governing party after democracy was achieved in 1994. The ANC’s status as the premier vehicle of majority aspirations for almost a century ensures it a high degree of legitimacy; it won just under 70 per cent of the vote in the 2004 general election. Experience in other countries in which a popular liberation movement won a fight for national self-determination prompted expectations that the ANC would dominate society, leaving little or no room for citizen influence and engagement.[1] The ability of a coalition of activists, opinion-formers and local and international civil society organisations to prompt the government to change a policy on HIV and AIDS which it had energetically defended seemed to confirm that citizen action could exert influence in post-apartheid South Africa.
But it also defied many routine assumptions of political analysis. Campaigns for policy change are generally needed when governments are divided from campaigners by differences in interest or ideology:the campaign can then be analysed as a process in which campaigners try to pressure or persuade political power-holders to revise their understanding of their interests. By contrast, the campaign for a change in South African government policy on HIV and AIDSwas fought between a government and a coalition who were not divided by any noticeable difference of interest or value. To the campaigners, and most analysts, the government position was not the consequence of the configuration of power in the society or of clear ideological commitments: it was inexplicable– so much so that the activists who led the fight for a change in policy had not been expecting to campaign against the government at all. Their intended target was the multi-national pharmaceutical companies who were expected to obstruct attempts to secure affordable treatment for people living with the virus.[2] Since the government had passed a law allowing it to undercut their dominance of the market by importing cheaper medicines[3], and since its own constituency is severely affected by the virus, it was expected to ally itself with the campaign for a comprehensive response to AIDS. Instead, it became its prime opponent.
This peculiarity has important strategic implications for the campaign. It also raises questions about its replicability for other societies and, indeed, other campaigns in South Africa. Fortunately, despite its unusual character,the campaign has many featureswhich help us gain a general understanding of citizen action to achieve national policy change. This paper will, therefore, discuss the campaign, its achievements and limits, andits implications for a clearer understanding of the obstacles and openings which face attempts by campaigners to alter national policy.
About the campaigners
The campaign for a change in government policy which would allow affordable AIDS treatment was led by the Treatment Action Campaign, which has often been cited as a model for social movements concerned to win incremental gains for a constituency. It and its chair, Zackie Achmat, have received several international awards and were nominated for the Nobel Peace Prize.[4]
Launched on 10 December, International Human Rights Day, in 1998, TAC was a response to the HIV and AIDS epidemic whose impact, obscured as a public policy issue by the pressures of political transition, was becoming apparent: over five million South Africans are believed to be HIV positive.[5] TAC was initiated to campaign for affordable treatment for people living with the virus, in particular for access to anti-retroviral (ARV) therapy, the only effective means of containing the impact of AIDS – in TAC’s own words, it sought to ‘campaign for greater access to treatment for all South Africans, by raising public awareness and understanding about issues surrounding the availability, affordability and use of HIV treatments’.[6] Its founders were two former anti-apartheid activists, Achmat (who is HIV positive) and Mark Heywood; they sought to use the techniques developed in the fight against apartheid to press pharmaceutical firms to offer affordable medication to people living with AIDS.[7]
TAC employs a multi-strategy approach to campaigning, and its methods range from civil disobedienceand street demonstrations through action in the courts to measured pamphlets spelling out scientific arguments. It is not only a campaigning organisation: it also runs programmes which provide important services to its members. Perhaps the most important are the treatment project, which provided medication for a limited number of TAC and ‘community’ members,[8] and the treatment literacy campaign which offers advice to people undergoing or administering treatment[9] - these attempts to equip people living with HIV and AIDS with information tend to include, alongside practical advice, content which may raise consciousness.[10] It has alsocombined service provision with civil disobedience –in 2002, it imported generics from Brazil, ignoring the patents held by pharmaceutical companies.[11]
TAC is a membership organisation, although important aspects of its internal structure are unconventional. Thus there seems no clear-cut distinction between members – who usually do not pay dues but do fill in membership forms– and ‘supporters’, ‘volunteers’ or ‘activists’.[12] It may, therefore, be more accurate to describe all people active in TAC as ‘participants’ rather than drawing a clear distinction between members and supporters. Membership is relevant in the election of office bearers although even here there is divergence from the norm: members do elect its national executive but social sectors are also represented - children, youth, faith based organisations, health care professionals and trade unions.[13] In KwaZulu Natal, clinic staff and local councillors are encouraged to attend TAC meetings.[14] Thus, while the recruitment of individual members is an important route to participation, TAC is not an entirely conventional membership organisation. In 2005, membership was said to be around 12,000[15] - a very small percentage of the population living with HIV and AIDS. Activists point out that the numbers participating in TAC marches – which they estimate at between 8,000 and 15,000 – indicate an ability to mobilise people well in excess of its membership.[16]
TAC has grown in size, scope of activities and funding. Unlike most social movements, it has substantial full-time staff, administration, and donor-funded programmes. In 2004, it employed 40 people and had a budget of R18m[17] - roughly double the income for the 2002-2003 financial year. Predictably, since it does not charge membership fees, all revenue is sourced from donations.[18] The presence of several official donor governments as funders despite TAC’s opposition to government policy and its civil disobedience campaign suggest a growing acceptability but this does not mean that official donor misgivings have disappeared –‘some are nervous of TAC because they see us as too critical of government’.[19] TAC does not accept donations from the South African government or pharmaceutical companies[20] or from USAID because ‘they are seen to promote the interests of the US government’.[21]
The bulk of TAC activity remains concentrated in the metropolitan areas of the provinces which house the country’s three largest urban centres – Gauteng, Western Cape and KwaZulu Natal. However, TAC does have active branches in smaller towns in KwaZulu Natal and Western Cape particularly, and is seeking to build a presence in provinces which are further removed from the major urban centres.[22]
TAC is not affiliated to a political party and members are said to support a variety of parties.[23] ANC members are numerically dominant[24] – as they probably are in most membership organisations given the size of the ANC’s electoral majority. Frequent statements by Achmat that he is a ‘loyal member of the ANC’ elicit criticism from activists in other social movements.[25] Senior officials acknowledge that, while TAC endorsed the role in the ARV ‘roll-out’ of a provincial government in which the ANC is in coalition, the same stance would have been very difficult – perhaps impossible – if the province was governed by the opposition Democratic Alliance.[26] So, despite its political independence and diversity, TAC has a political identity which ensures a relationship with the government and ANC unlike that of most social movements.
Its relationship with the ANC is more complex than Achmat’s statement might suggest. Achmat has called for the democratisation of the ANC which, he argues, largely ignores civil society. And, in an interview before the 2004 election, he suggested that ‘the ANC would like TAC to endorse a boycott of elections so that we can lose legitimacy’.[27] And, of course, substantial ANC support within TAC did not dissuade it from launching a civil disobedience campaign in which it attempted to charge the Ministers of Health and Trade and Industry with culpable homicide. TAC’s approach to the ANC is not, therefore, straightforward loyalty. To social movement activist Ashwin Desai, this attitude is a legacy of Achmat and Heywood’s days in the Marxist Workers’ Tendency, which sought to advance a left perspective within the ANC.[28] But, given that a degree of internal democracy is available to TAC members (see below), it is highly unlikely that two leaders would be able to shape the entire direction of the organisation unless their preferences were broadly consistent with membership sentiment. It is more accurate to see the ANC as the expression of the political identity of many TAC members – but one which does not impel them into loyalty to it when it is seen to deny or obstruct treatment to people living with HIV and AIDS. The closest analogy is to TAC’s ally the Congress of South African Trade Unions (Cosatu) which is loyal to the ANC but independently pursues its interests when these conflict with ANC policy and practice – although the analogy has clear limits since Cosatu is a formal ANC ally while TAC is not.
The ANC is a broad-based national liberation movement, not a programmatic political party. It unites a range of interests and political perspectives around a common commitment to ‘national liberation’. While its support remains high, it is often largely symbolic. Only a small fraction of ANC supporters actually belong to the movement: according to the ANC, membership has averaged 400,000 over the past decade, only about four per cent of its electoral support at the 2004 general elections.[29] The ANC itself regularly complains about its difficulties in maintaining vigorous participation and a common commitment to principle now that democracy has been achieved.[30] This suggests a gulf between leadership and membership. National leadership under the current president, Thabo Mbeki, has sought to impose greater uniformity on the movement but has been only partly successful – a demand for greater expression of diversity within the ANC gathered pace in 2005 and found partial expression in a coalition which rallied around former deputy president Jacob Zuma, who was relieved of his post after being charged with corruption.
One consequence of this context is that it is possible to express broad loyalty to the ANC without belonging to it – indeed, this is the norm among its supporters. Another is that support for the ANC does not, in principle, constrain activism by forcing supporters to support government policy positions. Within that minority which is actively engaged in the ANC, however, a strong ethic of loyalty or obedience prevails. As the story of Gordon Mthembu, told below, shows, this creates a tendency to close ranks against perceived attacks on the movement. A history of fighting racial domination has also prompted an ethos in which black dissenters may face far greater disapproval than their white counterparts (because unity in the face of white privilege is expected).
This presents activists with a complex array of choices. Operating within the broad ANC fold offers potential advantages: chief among them is that it makes it far easier for grassroots people to participate in or support an activist movement. It also opens up avenues for influence within government. But it is not a guaranteed route: the ANC’s two formal allies, the Congress of SA Trade Unions and the SA Communist Party, are forced into continual opposition to its economic policies, over which they have little influence. And working within the ANC camp – however broad and organisationally loose it may be – creates pressures for loyalty. The relationship between activist groups and the governing party can, therefore, pose delicate strategic questions and require complicated balancing acts. As this paper will show, these have posed a challenge to the campaign since it began.
Why do participants join TAC? More is at stake for people at the grassroots than the hope of receiving medication. Many noted the sense of hope, efficacy and self-worth which people drew from belonging.
TAC…talks and teaches positive living, that this illness is not a sin – life is not wasted or less valuable, it must go on. People who come to us are the poorest of the poor, those with no resources, education, information- that is what they come to TAC meetings for, that and the hope of getting treatment.[31]
TAC also seeks to play a role in eradicating the stigma of HIV/AIDS and to ‘provide vital information about HIV which the ordinary person has trouble accessing- TAC is there for the man or woman at ground level’.[32] People join TAC, in one activist’s view, not only ‘because it is vocal about important issues concerning them and has no political agenda’ but because ‘it is a forum to share the experience and pain of living with HIV’.[33] ‘TAC’s biggest success has been the way that it has gone some way to ending discrimination about HIV and AIDS. People are not afraid to be open about their HIV status any more’.[34] ‘I would be dead by now if it wasn’t for the TAC – they gave me the courage to accept my status and be open about it.’[35]
Most TAC members are women – one source estimates the proportion at 60-70 per cent.[36] This is not surprising, given evidence that women are far more likely to be infected by HIV:[37] a TAC official notes that statistics show that women aged between 15 and 30 are more vulnerable to the virus than any other group.[38] Women are also subject to domestic abuse and violence compounded by the advent of HIV and this is said to give them an added incentive to participate.[39] They also appear to be active participants: one interviewee notes that, while attendance at branch meetings differs from branch to branch in numbers and gender distribution, ‘overall I would say that about 50-60 per cent are women’,[40] who are said generally to attend in greater numbers than men and to be more active in TAC activities. [41] But, while some office bearers insist that gender balance has been achieved in TAC with a roughly equal gender distribution among office bearers and staff,[42] an interviewee estimates that only about one third of office bearers and about half of staff members are women.[43]
Who Governs TAC?
Despite its unconventional approach to membership, TAC has a formal structure which provides for internal representative democracy. The basic unit is the branch. Each province in which it is active also has a provincial executive committee (PEC); its prime decision-making structure is the national executive committee (NEC). National leadership is nominated by branches and elected at a national congress every two years where four national office bearers are also elected: chair, deputy chair, secretary and treasurer. Despite the ambiguities about membership, participation at branch meetings is largely restricted to members.