Introduction

The HIV/AIDS epidemic is framed, if not burdened, by many histories. There are histories of past epidemics and diseases, including sexually transmitted diseases; histories of scientific investigation, and of medicine and social hygiene; histories of the various groups affected by HIV and AIDS: of homosexuals, of drug users, of the poor and racially disadvantaged in the urban centres of western nations, and of the poor and exploited in the developing world; and there are histories of social policy and of welfare policies, or of their absence, which can help us to understand the various phases of the political and governmental response to HIV and AIDS. AIDS is already a deeply historicised phenomenon.

But at the centre of any attempt to understand the response to the epidemic in the west must be the history (or rather histories) of sexuality. At the most basic level this is because sexual intercourse is one of the most efficient means of transmission of the virus, and changing patterns of sexual interaction helps explain its rapid spread from the late 1970s. There is, however, a more profound reason why we need to situate HIV and AIDS in a history of sexuality. AIDS was identified at a particular moment in that history, when values and behaviour were in a period of unprecedented flux, and when sex-related issues came close to the top of the political agenda.

There is a different historical consciousness around AIDS at the end often years. AIDS now has its own history, rather than borrowing from the more distant past. Surveys of the recent past, looking back over a decade, are common. There is a realisation, too, that understanding AIDS requires an assessment of the ‘larger agenda’ of health, social and science policy development in the post-war period. The impact of the disease cannot be assessed without knowing something of this ‘pre-history’. This book is therefore framed around the twin areas of AIDS as history and the pre-history of the disease. Its concern is very much with AIDS as an issue in contemporary history and with the perspectives on the history of post-war health policy which it has revealed.

The purpose of this introductory chapter is not just to survey AIDS as a problem in contemporary history, but to reflect on the changing relationship of AIDS and history over the past ten years. For even in its early stages, the disease brought history in its train. The function of the discipline was different at that time. Much historical commentary aimed to point a ‘lesson of history’. Its concern was to draw parallels with the distant past rather than to locate AIDS in its immediate pre-history. The form of history has therefore changed over time. It has shifted from far distant events to those of only a few years ago. The function of history, too, has shifted.

Archival holdings available for research of all kinds in the UK are among the most rich and extensive in the world. The wealth of these collections is shown in British Archives which contains details of the material held by more than 1,000 archive repositories, libraries, institutions and societies. However, this is not exhaustive. There is more material to be discovered and records are being created continually.

The AIDS Social History Programme, based at the London School of Hygiene and Tropical Medicine and financed by Nuffield Provincial Hospitals Trust, has been engaged, since 1988, upon researching and writing the social history of AIDS in the UK. The work is concentrating on official policy making in the context of the various influences upon it from the statutory and voluntary sectors, the medical establishment and medical research. An initial aim of the Programme was to establish an AIDS archive. However, before any decisions could be made about taking in material it was desirable to investigate the records being generated by those individuals and organisations involved in the AIDS arena. As an initial phase, a pilot survey was established, in January 1990, as a four-month project to identify the extent and scope of primary documentation for the history of AIDS in the UK.

Surveys of primary source material are not new.

Introduction

The unexpected and sudden emergence of the HIV/AIDS epidemic in Britain in the 1980s – as in other countries – posed difficult issues for individuals, pressure groups and social movements, health care organisations, and the national political and policy process alike. This experience has to be captured quickly if memories are not to erode and while accounts are beginning to emerge of the governmental and ministerial process, of the formation of policy ‘communities’ and lobbies acting on formal policy making; and the role of professional experts in influencing the formation of national policy, there is still work to be done on the response by District Health Authorities which represent the operational tier of the National Health Service (NHS) although we can build on an earlier analysis of a single case in a high prevalence locality. Some American work has examined the organisational response in particular localities suggesting interesting local sources of variation. But we need to know more about how British health care organisations responded to an unanticipated epidemic – and new epidemics have been rare in First World health care systems – which has had such important societal consequences.

HIV can be seen as a single health care issue but one which was processed within a particular organisational form (District Health Authorities (DHAs)) which span a multiplicity of issues, involve a wide variety of interest groups, contain a strong political component and also a range of powerful professional groups.

In the 1970s, a decade before AIDS became epidemic, it was discovered that a hepatitis B (HB) pandemic existed. Hepatitis B, often referred to as serum, or transfusion hepatitis, had been thought to be an iatrogenic disease, caused by western medical technology, and of limited spread outside the developed world. Due to the work of the geneticist Baruch Blumberg, an antigen associated with hepatitis B (the so-called Australian antigen) was accidentally discovered, and from that discovery a blood test for the virus developed. With the aid of the test, it was found that hepatitis B was the most widespread viral disease in the world, infecting billions of people, especially in Asia and sub-Sahara Africa. It was also discovered that between 200,000,000 and 300,000,000 people were chronic carriers of the disease and constituted an infectious reservoir for the virus. In some Asian countries, such as Vietnam, fully 15–20% of the population were carriers of the disease.

In addition, researchers discovered that chronic hepatitis B infection was highly associated with the development of liver cancer; hepatitis B being a necessary (though not sufficient) cause of most of the world's liver cancer; and, in turn, liver cancer was the most frequent cancer in developing countries. Chronic carriership was also correlated with cirrhosis of the liver; most cirrhosis being caused by HB infection, not alcohol consumption.

Organisations for the prevention and cure of sexually transmitted diseases (STDs) have been battlegrounds for social conflicts and international tensions. Debates on control of STDs expose tensions between officially condoned pro-natalism and social purity movements, and dissident internationally minded feminists, socialist sympathisers and pacifists, demanding removal of police controls on public morality, sex education, freely available contraceptives and the socialisation of health services. Medical scientists were themselves divided between these contrasting viewpoints. The emergence of any unitary international consensus on STDs let alone any single authority has been undermined by governmental hostility to a supranational agency, controversies over medical power and the efficacy and distribution of new drugs like salvarsan and penicillin, and by birth control propagandists challenging traditional notions of the family.

Imperialist conferences and conflicts

Imperialist concerns with promoting national efficiency by combating physical degeneration and declining birth rates arose at the same time that campaigners for the abolition of police controls on prostitution were seeking comprehensive strategies to prevent and treat STDs throughout the totality of populations. Voluntaristic models of self-help clashed with state and policing regulatory measures. Whether there should be targeting of specific groups like prostitutes or education of total populations (recognising that STDs were not a monopoly of prostitutes) were issues. The extent that STDs were precipitated by poverty, the lack of basic sex education or immorality was keenly debated.

Most of the literature on HIV infection makes at least passing reference to ‘public health’. However, the meaning of the term varies enormously. The public health implications of AIDS may be identified as the ways of protecting the population from infection, or, especially in the USA, may raise the issue of how to provide health care services for persons with AIDS within a badly fragmented system that offers only limited access. The public health issues arising from HIV are usually agreed to cover its epidemiology, to which disease control centres in both Britain and the USA have made the major contribution, and also the controversial debates arising from the interpretation of epidemiological data, which have focused on the protection of civil rights in face of measures to test for and control the spread of the infection. The behavioural changes believed to be necessary to prevent the infection may also be referred to under the heading of public health education. The lack of clarity that marks the discussion of public health in the literature merely reflects the wide-ranging – some would say, less flatteringly, ‘rag-bag’ – nature of public health ideology and practice in the mid- and late twentieth century. Since the heroic battles of the nineteenth century for clean water and sanitation, and against infectious disease, the identity of public health as a specialty and in its relations to medicine has been far from clear.

Introduction

Many of the problems which face a society never disappear completely, but political interest in them often does. Political attention spans rarely do justice to the issue at hand. In 1972, the political scientist Anthony Downs described the ‘issue attention cycle’ that then applied to environmental issues. The cycle was characteristic of most public problems. ‘Each of these problems suddenly leaps into prominence, remains there but a short time, and then – though still largely unresolved – gradually fades from the centre of public attention’. This thought has become so common that it is now enshrined in the title of a textbook on British policy making: From Crisis to Complacency. There is a strong temptation to fit this conventional wisdom on to British AIDS policy.

The story would run something like this. From 1982 to late 1986, a sense of panic gradually developed within government. The spread of AIDS came to be seen as a ‘threat’ for which crisis action was needed. This impression was fostered in the pages of tabloid papers, and in a wave of television documentaries. The government had to be seen to act. A special Cabinet Committee was created, the budget for public education was vastly increased, as was research and treatment funding; television adverts were broadcast and every home received a leaflet explaining how AIDS was spread and how it could be avoided. And then, just as suddenly, AIDS disappeared from the front pages of the papers.

Introduction

This paper grew out of the realisation that the governing context of my appraisal of contemporary AIDS policies was the historical material that I was dealing with in my research on tuberculosis policy and health education. The debates surrounding HIV serotesting had a deep resonance in the correspondence in the Public Record Office (PRO) files of the Ministry of Health dealing with policy formation on mass testing and health surveillance. Here too there was long, careful and critical consideration of the mandate and responsibility for the extension of routine health services into new territories. There was also concern at the Cabinet level about international co-operation in epidemiological data collection and the consequences of exclusionary immigration controls. I was struck too by the problems, both epistemological and practical, which the notion of ‘presymptomatic illness’ had posed for policy makers.

In saying this, I must, however, be cautious of the methodological trap of ‘presentism’; i.e. attempting to interpret past actions and actors in terms of the cognitive structures, analytical paradigms and critical agendas of the present. This is a particular danger for sociologists such as myself who look for the broader dynamics involved in policy changes over and above those which are situation specific. However, it would be overcautious in the extreme to fail to bring to the table of contemporary discussions the longer history of experience of creating preventive health programmes.

In January 1988 Dr Stephen C. Joseph, the New York City Health Commissioner, gained approval from the state health administration for a medical experiment, a controlled clinical trial. Usually the conduct of a clinical trial is respectfully left to experts; rarely will its origins be announced on the front page of the New York Times, with its fortunes chronicled in subsequent editions. But this was no ordinary scientific trial. Law enforcement officials immediately called the experiment ‘unthinkable’, and many of the city's minority leaders denounced it as ‘genocide’. The trial was designed to recruit a limited number of drug addicts to a treatment group permitted to trade-in used needles and syringes for sterile equipment, and to compare their progress with a control group not given the same access to clean paraphernalia. From the beginning, New York's experimental needle exchange scheme, like so many other public health initiatives aimed at controlling HIV infection, was controversial, a focus for fear, frustration and political manoeuvre in the city. The troubled history of the needle exchange scheme illustrates the constraints on health promotion in a liberal American city overwhelmed by AIDS, drug addiction and racial tension.

Although it has recently been argued that the development of AIDS policy offers ‘many examples of the triumph of the ethic of professionalism over the confused and conflicting claims of morality and ideology’, the attempt to establish a needle exchange scheme in New York is not such an instance.

In the decade since AIDS was recognised in the United States, extraordinary public debate has surrounded the response of the medical establishment, especially the biomedical research enterprise, to the disease. Particular facets of this response have been considered by a number of authors. Gerald M. Oppenheimer, for example, has analysed factors involved in the epidemiological identification of AIDS at the Centers for Disease Control (CDC), and Daniel M. Fox has included biomedical research policy in his identification of a wider ‘crisis of authority’ in the United States health polity. Lacking, however, has been an interpretation of the capacities, policies, opportunities and restraints that governed how and to what extent federal research organisations could respond to AIDS.

Although such a full-scale evaluation is far too large for a single paper, we will examine two major policy issues and present two case studies that illuminate the context in which the emerging problem of AIDS was integrated into the existing framework of biomedical research sponsored by the National Institutes of Health (NIH). The two policy issues are the structure of the NIH system for distributing grants and the emergence of targeted disease programmes and planning. The NIH grants system had been constructed carefully over three decades and, when confronted with the AIDS challenge, we will argue, functioned with adequate flexibility within its historic edifice.