International Politics of HIV/AIDS

Global Disease-Local Pain

Hakan Seckinelgin

• Publisher: Routledge
• Year: 2007
• ISBN:
  9781134123728
• Edition: 1
• Topic: Politics & International Relations
• Subtopic: Politics
• Index: Politics & International Relations

This book examines the global governance of the HIV/AIDS epidemic, interrogating the role of this international system and global discourse on HIV/AIDS interventions. The geographical focus is Sub-Saharan Africa since the region has been at the forefront of these interventions. There is a need to understand the relationship between the international political environment and the impact of resulting policies on HIV/AIDS in the context of people's lives.

Hakan Seckinelgin points out a certain disjuncture between this governance structures and the way people experience the disease in their everyday lives. Although the structure allows people to emerge as policy relevant target groups and beneficiaries, the articulation of needs and design of policy interventions tends to reflect international priorities rather than people's thinking on the problem. In other words, he argues that while the international interventions highlight the importance attributed to the HIV/AIDS problem, the nature of the system does not allow interventions to be far reaching and sustainable.

Offering a critical contribution to the understanding of the problems in HIV/AIDS in Sub-Saharan Africa, International Politics of HIV/AIDS will be invaluable to students and researchers of health, international politics and development.

1 Governance of HIV/AIDS

The HIV/AIDS epidemic is one of the most catastrophic phenomena that has impacted and will continue to impact people’s lives in Sub-Saharan Africa. According to UNAIDS in December 2005 an estimated 40.3 million people are living with HIV. Around 25.8 million of these are living with the disease in Sub-Saharan Africa. In 2005, 3.2 million people contracted HIV (UNAIDS 2005a: 2–3).¹ The epidemic is generalised largely in eastern and southern Africa, influencing all aspects of society. It also seems to be intensifying in southern Africa (UNAIDS 2005a: 4). In addition, there are predictions that estimate a steady increase in the infection rates in the years to 2010 in many countries. This includes western Africa, where numbers at present are not as high as in other parts of Africa. These terrible numbers do not reflect lack of attention. Far from it, the problem has been given importance in the international development and aid policy agendas for the best part of the last ten years. International funding for interventions has been gradually increasing for the region. This has been boosted by the Bush administration’s US$15 billion pledge to 12 African and two Caribbean countries for HIV/AIDS interventions over five years from 2003. The aim is to support treatment and prevention in the designated countries. Despite controversy over its focusing on abstinence as a prevention method, the funding presents a major contribution to the global attempts. Considered in relation to projections of UNAIDS, which forecast a US$3.07 billion requirement by 2005 for Sub-Saharan Africa in order to provide care and support for those who are in need, the US contribution is of considerable importance. It is at this point that the question of internationalisation of the policy frameworks that gives a global outlook to HIV/AIDS becomes important. To analyse this, the chapter first looks at the process of internationalisation and how this process has created a governance system for HIV/AIDS policies. Here, the aim is to unpack the role of governance structure in influencing the behaviour of particular actors. Then it highlights some effects of this system as expressed by people who are targeted by the policies.

The existing policy intervention models channel funds through diverse policy actors. These typically include governments, non-governmental organisations, community groups and private sector groups. Arguably, existing intervention channels and actors have not been as productive as expected or hoped. This is demonstrated in a report by the Global HIV Prevention Working Group (GHPWG). The report points out an important problem, the problem of reaching people who are in need. It suggests that in general fewer than one in five people have access to basic HIV prevention programmes. In terms of Sub-Saharan Africa, the report argues that ‘only six percent have access to voluntary counselling and testing (VCT) and only one percent of pregnant women are able to obtain access to treatment to prevent mother-tochild transmission’ (GHPWG 2003: 2). What conclusions should one draw from this?

It could suggest that (a) there has not been sufficient sustained and focused support, both politically and financially, as most of the interventions require such steady and constant support, and (b) actors that are initiating these interventions have been unsuccessful in engaging with large parts of the infected and affected populations to change their behaviour. These two conclusions are linked. For example, one might assume that if a were solved then b would be too. In this way, the US contribution could be seen as a way of bridging the gap discussed in the GHPWG report. The financial input could allow programmes to be scaled up to address the needs of people within a larger population. However, while addressing (a) is central, it is questionable that (b) will automatically follow as a result. If this alternative logic is correct then there is a danger of putting large funding into ineffective policy intervention structures that will not produce satisfactory results at the end of a given time period. This in turn may have long-term consequences for the sustainability of the programmes created. For example, funders might become reluctant as a result, and people infected and affected might become disillusioned in relation to behaviour change. To determine which logic is correct, therefore, it is imperative to look at the existing mechanisms of policy implementation rather than to assume that once finances are in place things will improve. Indeed, contributing factors to the depressing gap discussed in the report may even be related to the characteristics of agents that are considered to be the most effective channels for policy implementation. If this is the case, it indicates a severe problem for the international policy actors in understanding what needs to change in the existing system to achieve desired goals.

Internationalisation

The internationalisation of the debate can be looked at through a gradual institutionalisation of the HIV/AIDS issue in the intergovernmental organisations’ agenda through which the issue became an important part of the international political debate. By looking at responses to the disease in various country contexts it is also possible to discern an earlier internationalisation process based on the image of the disease as a Western problem. I start by briefly commenting on this as the first phase of internationalisation. The internationalisation of HIV/AIDS, of course, did not mean the emergence of the disease in the South for the first time. The disease had been in the South from its onset and the way it had been considered was influenced by international discussions. However, a different kind of influence emerged at the end of the 1990s which was related to the perception of the disease through the gaze of medical science and international politics. Before the second wave of internationalisation, the image of AIDS and its context was of a Western homosexual disease. This was promoted by the media where available in developing countries. This early association of the disease with homosexuality created problems for various countries at the onset of the epidemic in the South. The early identification of patients in developing countries resulted in a very limited response from public policy quarters. The response largely amounted to branding the disease as a foreign import from the West confined to high-risk groups such as gay men or the denial of the existence of AIDS altogether (Treichler 1999: 99–126; Farmer 1993: 111). Since it was possible to deny the existence of homosexual identity in certain cultures, the public authorities were able to be inactive in relation to HIV/ AIDS, considering it an alien problem. The impact of initial and sustained opposition to certain prevention methods, in addition to the disbelief in such a complex disease among traditional communities by various faith groups, hindered the possibility of early interventions. As a result, respected community leaders had to take on the burden of talking about living with AIDS as a possibility and not a cause of hopelessness. Archdeacon Zebulon Mung’esi of Bunyole, Uganda, talked about AIDS in his family (Whyte 1997: 216). At national level, in Uganda for example, Revd Gideon Byamugisha was the first practising priest in Africa to declare his HIV positive status publicly to educate people about the disease. At the international level there was the intervention of President of Zambia Kenneth Kaunda in 1987 who announced that his son had died of AIDS and demanded his fellow leaders around the world and in Africa in particular engage with the AIDS epidemic with an open mind (Foster and Lucas 1991: 38). While the inaction of African governments was clear from the First International AIDS Conference in 1985, where no African government was present, Kaunda’s intervention was a turning point for some African countries. It also highlights a central difference between people’s reactions and the way subsequent internationalisation has influenced the debate. While in the developed world people with HIV/ AIDS took the initiative and forced governments and drug companies to provide what they needed, in the South AIDS was articulated by outsiders rather than by people living with it.

This also influenced the nature of local activism and the reluctance of governments to engage with AIDS. At the time, the problem was addressed by and large by existing religiously based groups and services and some international non-governmental organisations (NGOs) already working in the affected countries. One of the first groups to provide services was the International Family Planning Agency, which locally distributed a manual on AIDS (Harper 1989).² In addition, international funding agencies got involved in funding HIV/AIDS-related programmes, for example USAID and the Canadian International Development Agency (CIDA) supported prevention and sensitisation work in Senegal from as early as 1985. Actions of these groups focused on informing people about the disease and generally talking about prevention methods. Although the immediate reaction to the disease in 1984 was to ignore it as an alien homosexual problem, towards the end of the 1980s governments were pressurised to engage with the disease (Ford 1994: 89). As the second phase of internationalisation emerged, funding from international sources created many local NGOs and supported the continuity of local initiatives. In some countries already-existing NGOs and community groups provided the grounds for international interventions.

In the late 1980s international organisations gradually came to accept HIV/ AIDS as an international problem. In this internationalisation of the debate, actions of individuals and their groups made a considerable difference, such as the already-mentioned intervention from Kenneth Kaunda in 1987. Another important intervention was by Dr Halfdan Mahler, the then director of the WHO, who in 1988 stated that ‘many people at first refused to believe that a crisis was upon us. I know because I was one of them’ (Panos Institute 1988). Activist groups also played an important role in opening up the international fora for people with AIDS (PWAs)’ participation in the debates.

These perspectives were supported and stimulated by individual experiences of medical professionals coming from developing countries. Dr Jonathan Mann was one such professional. He became a central figure in the debate, making a case for a comprehensive global approach to the epidemic that incorporated concerns for the developing world. For him it was clear from his experience in Zaire as directing officer of the Centre for Disease Control (CDC)-led project to follow up ‘early cases of the disease in Europe that involved Africans’ that the disease was an important social issue on a global scale (Mann et al. 1986). Arguably it was the political activism in the developed countries which pushed the disease into the international political frame of mind. As the awareness of the scale of the disease emerged through the activism of people working in various contexts and their lobbying in the WHO, this stimulated the debate to create a space for discussion and to create a mechanism for international interventions. These attempts toward internationalisation of the response to the epidemic were built on time spent in convincing professionals of the WHO that the epidemic was influencing people in the developing countries and was not only an industrialisedcountry problem based on gay communities (Gordenker et al. 1995: 42).³

The international debate was also created through the intervention of both the Northern activists and informed discussions provided by medical professionals experiencing the diseases in developing countries. The support subsequently provided by the WHO to host international conferences on AIDS provided an important global space for people to come together and discuss emerging issues and medical advancements around AIDS. The meetings early on involved only medical professionals, health specialists and policy-related participants. Patients were not considered to be relevant participants. Gradually these international gatherings were pushed to open themselves up to include people with AIDS too. It was in 1989 that ACT UP with its counterparts in Canada stormed the Fifth AIDS Conference in Montreal. It was the first time PWAs were in such fora. ‘PWA Tim McCaskell grabbed the microphone and “officially” opened the conference “on behalf of people with AIDS from Canada and around the world”’ (ACT UP). In other words, activism was spilling over the national borders and creating international links among activist groups from across the globe. Groups such as GMHCs and ACT UP were providing know-how for civil society action in this area (Watney 1994). The activism in these areas allowed PWAs to assert their right to participate in discussions that were central to their lives. This was an important challenge to both the medical profession and intergovernmental organisations. Arguably these events and activists’ interventions were also part of the internationalisation process that was crystallising around the issue of HIV/AIDS and PWAs globally. The main source of this expansion into the global was the values and beliefs people – PWAs – held in relation to feeling solidarity with others who were suffering from the same disease, in addition to simply giving their pain a voice. However, the global perspective beyond this deeply rooted camaraderie quickly turned into international institutionalisation.

In 1987 the WHO established its Special Programme on AIDS, which later became the Global Programme. Around this time Perez de Cuellar, the then secretary-general of the United Nations, brought the issue to the General Assembly and called AIDS ‘a global conflict’ (Gordenker et al. 1995: 41). From 1987 onwards, under Mann’s directions, through the Global Programme on AIDS (GPA) the WHO played an important role; NGOs were considered to be partners in this move. The GPA has become the focal point for communication between intergovernmental policy discussions and NGOs that have already moved to work with people on HIV/AIDS in the South. Its approach was ‘medically and epidemiologically driven and adopted a short term and conceptually limited fire-fighting perspective’ (Barnett and Whiteside 2002: 74). The GPA became a specialised agency in 1996 called the United Nations AIDS Programme. Its mandate is to coordinate the UN system’s response to the global HIV/AIDS crisis. UNAIDS replaced GPA as a much more visible face of the response of international organisations and it has also become a knowledge centre with its Geneva offices on HIV/AIDS. Arguably it has inherited GPA’s model where ready-made policies were produced based on best-case medical interventions for behaviour change implemented in various countries. The internationalisation process became even more intense in the late 1990s, culminating in a special meeting of the UN General Assembly (UNGASS) in June 2001 to discuss HIV/AIDS. This is generally seen as an important turning point for HIV/AIDS. The meeting and its final declaration set HIV/AIDS right in the centre of the international political debate as a global concern. It was also at this UNGASS meeting that creation of a global funding mechanism for HIV/AIDS was envisioned. Subsequently malaria and TB were added to the mandate of the organisation and it was entitled the Global Fund to Fight AIDS, Tuberculosis and Malaria. The organisation acts as a financial instrument rather than an implementation agency, with its budget funded by international donations from individual states. It has introduced several interesting structural innovations as an international organisation. The changing attitude of the international fora also reflects a gradual change in the perspectives of the governments of industrialised countries. This is important, as intergovernmental organisations became highly influential in the health policies in the developing countries.

In the meantime another process also influenced the internationalisation process and strengthened the motivations that were behind new international organisations such as the Global Fund. The announcement of the possibility of multiple drug therapy in the Eleventh International AIDS Conference in Vancouver held in July 1996 brought hope to people with AIDS. Around 15,000 scientists, activists, politicians and representatives of pharmaceutical companies (particularly those involved with drug trials) came together to discuss new developments. According to accounts of the conference, the event took place in an uncharacteristically optimistic mood despite voices to keep things in perspective. One such voice was Dr Peter Piot, head of the newly created UNAIDS, who warned that ‘[T]here is hope, yes, but let’s not exaggerate. Let’s not switch from very dark pessimism to hype and overoptimism so we will have a hangover within six months or a year’ (Piot 1996). As a poster in Britain in December 2001 rightly noted, ‘No One Has Been Cured’; however, the disease in developed countries has become a treatable (HAART) chronic disease which does not influence people’s everyday lives any more in the way it did before. The possibility of keeping people alive by controlling their immune system with the use of a combination of drugs revolutionised the debate. By providing a new way of tackling the disease in developed countries, it provided a renewed hope for people living with the disease. One of the most important complications of the new situation, however, was the cost of multi-drug therapy. It is this aspect of the new situation which has proved to be an important hurdle for people living in developing countries in particular. The high cost of the drugs created a situation in developed countries where treatment was incorporated into the medical system. In contrast in developing countries treatment has remained unavailable and interventions are kept to prevention and care. A case of drugs for us, condoms for you. The possibility and conditions for treatment provision in developing countries have highlighted a number of international issues and cleavages which are still at the centre of the debate, as discussed earlier, in the Introduction.

The production costs of multi-drug treatment meant that the hope presented by the new technology was out of reach for most developing countries. This fact immediately positioned the big pharmaceutical companies that produced the drugs, and thus were very protective of their patent rights, and activist groups in many countries at loggerheads. The latter were arguing that benefits from these medical innovations were everyone’s right independent of the interests of the big pharmaceutical companies. This situation also strained the relations between governments that were attempting to protect big industrial interests, such as the US, and AIDS activists who were trying to help people in Africa once they realised the benefits of treatment. Here, we have the internationalisation of treatment and treatment activism. In this process there were many actors that were trying to make drugs internationally available to those who were in need. These included medical professionals, international NGOs, governments and international organisations. It was clear that there had to be a number of new initiatives to support access to the drugs. In 1997 ‘France launched [the] French International Therapeutic Solidarity Fund (FSTI) to pilot treatment projects in Francophone Africa’ (D’Adesky 2004: 20). And in 1998 the UN established its Drug Access Initiative, which was then run by activist groups such as the Health Global Access Project. Some of these initiatives were attempts to provide funding for purchase of drugs to make access to treatment possible without breaching patent rights. However, the scale of the problem in developing countries required faster and wider availability of cheap treatment than was available at the time. Initially Thailand and Brazil and then South Africa argued for generic drugs to be produced and utilised within their own countries, arguing that generics be made available to whoever needed them. This was encouraged by the decision in February 2001 of an Indian generic pharmaceutical company, Cipla Ltd, to provide AIDS combination drugs to frontline groups like MSF for US$1 a day. In this way a new stage in the efforts to tackle the disease was begun.

While treatment had become a possibility for people in developing countries, it also made treatment with generic drugs a major component of international trade discussions and disputes. In particular this occurred within the ongoing discussions on the World Trade Organization’s trade-related aspects of intellectual property law.⁴ The provision of generic drugs was also supported by international activists such as Médecins Sans Frontières (MSF) and Health Action International. In May 1999 they organised a conference together with Consumer Project on Technology (CPT) entitled Increasing Access to Essential Drugs in a Globalised Economy Working Towards Solution. At the end they issued a statement to officials of WTO, the ‘Amsterdam Statement’, that called ‘for health to be made a priority at the WTO Seattle negotiations and demanded a balance between the rights of patent holders and the rights of citizens in intellectual property rights regulations’.⁵ Furthermore, the statement called on the WTO to create a Standing Working Group on Access to Medicines which would look at the conflict between access to medicine and patenting rights and develop ways of operationalising the existing WTO regulations. Among its list of recommendations two are particularly important: ‘compulsory licensing of patents (under Article 31 of TRIPS)’ under emergency circumstances and ‘allowing for exceptions to patent rights (under Article 30 of TRIPS) for production of medicines for export market, when the medicine is exported to a country with a compulsory license’.

The pressure on pharmaceutical companies to reduce their prices to make drugs available was mounting. One way this emerged was as a joint initiative in 2000 by the UN system (UNAIDS, WHO, UNICEF, the UN Population Fund and the World Bank) and five big pharmaceutical companies (Boehringer Ingelheim, Bristol-Myers Squibb, GlaxoSmithKline, Merck & Co., Inc., and F. Hoffmann-La Roche – joined later by Abbott Laboratories in 2001 and Gilead Sciences in 2004). This was the Accelerating Access Initiative (AAI), which aimed to provide discounted drugs for HIV/AIDS-related illnesses to the least developed countries based on country GNP. The aims included to ‘accelerate sustained access to and increased use of appropriate, good quality interventions’ and to ‘strive to ...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Acknowledgements
• Introduction
• 1 Governance of HIV/AIDS
• 2 Constructing Agency in the Time of an Epidemic
• 3 Medicalisation
• 4 What Do We Need to Know for HIV/AIDS Interventions in Africa?
• 5 Language as a Transformative Mechanism
• Conclusion
• Notes
• Bibliography