Partnership and Pragmatism

The German Response to AIDS Prevention and Care

Rolf Rosenbrock, Michael Wright, Rolf Rosenbrock, Michael Wright

• Publisher: Routledge
• Year: 2003
• Print ISBN: 9780415241052
• eBook ISBN: 9781134549740
• Topic: Medicine
• Subtopic: Health Care Delivery

This book provides a comprehensive overview of the most important themes in German HIV/AIDS prevention and care from the beginning of the epidemic to the present. Multidisciplinary in approach, it highlights the unique contributions of Germany to AIDS work, making available for the first time knowledge which can be applied to other countries as well as to other fields of public health practice. Topics discussed include:
*structural prevention, a concept which unites political and behavioural change
*the synchronistic relationship between AIDS policy and gay politics
*the dominance of love and intimacy over other 'risk factors'
*an approach to prevention among drug users which emphasis human rights and accepts the using behaviour
*a unique partnership between public authorities and the voluntary sector
*services for women working in cross-national border prostitution
*an AIDS survivor syndrome among gay men
*HIV in the context of emotional risks taken by women in relationships.
In addition, specifically German themes are described, including special needs of gay men from the former East Germany, the difficulties of providing adequate outpatient care for people with HIV/AIDS and the history of the AIDS prevention debate in Germany.
The book offers medical, nursing, public health, sociological, psychological and social work perspectives on the German response to AIDS.

Part I
Introduction

1 Pragmatism and partnership
An overview of this volume

Rolf Rosenbrock and Michael T. Wright

It has been a daunting task to bring together in one volume a selection of articles depicting the cultural, social, political and scientific debates which have characterised the HIV epidemic in Germany. In such a limited space it was impossible to include contributions from all the women and men who have shaped the discourse over the years. We believe we have succeeded, however, in assembling a collection of writing which offers an international readership insight into many of the primary issues raised by AIDS in Germany. In selecting the themes and authors for this book we were guided by two questions: what have been the major topics in Germany’s attempt to manage the epidemic, and what has been uniquely or characteristically German in the approaches taken? The former question led us to opt for a wide range of authors and subjects so as to present the many facets of HIV in this country. The latter question helped us to focus on aspects which to this point have not been accessible to the larger international audience, given that the discussion has taken place predominantly in German. The result is the only overview of HIV and AIDS in Germany available in English, offering an ideal starting point for those interested in the subject.

Although the authors represent a large diversity of professional backgrounds, philosophical perspectives, and political motivations, an important theme tying together the various contributions – and AIDS work in Germany more generally – is that of partnership and pragmatism. The partnership is evident not only in the formal collaborative structures which have been established between government and the voluntary sector, the national and local levels, the primarily affected groups and public authorities, social science and prevention practice – to name but a few. One also finds partnership in terms of a hard-won consensus regarding a new paradigm for disease prevention which was first pioneered on a large scale during the AIDS crisis. This approach, which Rolf Rosenbrock et al. (Chapter 20) call the ‘new public health’ rejects control and containment measures in favour of community-based models, state support for self-help structures, and the inclusion of social minorities in the design and implementation of interventions. The innovation brought to public health by AIDS is not unique to Germany; however, the forms which innovation has taken, both in terms of research and practice, reflect larger historical and social themes in German society which can be found in the articles presented here.

The aspect of pragmatism represents a compelling unifying principle which was an important factor in bringing the various players together to organise HIV prevention in Germany in its present form. Although the German discourse about HIV and AIDS – and about most aspects of life in general, and politics in particular – continues to be characterised by German philosophical idealism with an emphasis on principle, the search for a pragmatic approach to the epidemic provided a focus and a direction for prevention which made innovation possible.

Part I provides the introduction. Chapter 1 offers an overview of the volume’s contents and unifying themes. Chapter 2 presents a brief description of key concepts within the German social welfare and health care systems which make up the context in which HIV and AIDS first appeared in Germany. This latter chapter is a sort of primer on important aspects of life in Germany related to the issue of HIV for those having minimal experience with the country.

Part II, ‘History, policy, and epidemiology’, describes the primary characteristics of the spread of HIV in Germany (Marcus, Chapter 3) as well as the political and social history of the country’s response to the epidemic (Frankenberg and Hanebeck, Chapter 4). This is followed by descriptions of the structure and role of the three major players in HIV prevention on the national level: the Ministry for Health (Miesala-Edel and Schöps-Potthoff, Chapter 5), the Federal Centre for Health Education (Pott, Chapter 6), and the Deutsche AIDS-Hilfe, the National German AIDS Organisation. The description of the latter is divided into a chapter on the history and role of the AIDS service movement (Schilling, Chapter 8) and one describing the theoretical basis for prevention work with the primarily affected groups; namely, structural prevention (Etgeton, Chapter 7). Etgeton argues that the “structural” barriers in society need to be addressed – for example, discrimination, income disparity, and culture difference – if prevention is to have long-lasting effect. These chapters as a whole offer the reader insight into the development of the structures for prevention in German, the underlying principles of their work, and the ways in which they have been explicitly designed to address different aspects of the epidemic. Of course, the problems inherent in these structures are also discussed by the authors, particularly in light of the changing epidemic and growing financial constraints.

Part III entitled ‘Risk perception and decision making in safer sex’, presents in Chapter 9 data from national samples which show how perception of HIV risk in the general population is related to popular theories of disease aetiology (Jacob, Eirmbter and Hahn). The authors demonstrate the importance of these theories in defining risk, and how common explanations for the spread of disease are affected by such sociodemographic characteristics as age, education and social status. Chapter 10 by Heinrich W. Ahlemeyer presents HIV risk in terms of the intimate relationship, arguing from a systemic perspective that prevention targeting the individual is not enough in order to address risk-taking in a couple. This focus on the psychosexual dynamics of HIV risk has been an important basis for the development of prevention in Germany, standing in contrast to approaches which emphasize identifying risk factors and promoting behavioural change at the individual level. The main question driving prevention research and practice in this country has been: what is the political, social and relational context of risk-taking and healthy behaviour as opposed to what are the psychological risk factors for those engaging in unsafe sex, and how can we intervene with these individuals? In this vein, Martin Dannecker (Chapter 11) has ironically labelled love itself as being a risk factor. Dannecker makes clear, from the perspective of depth psychology, that risk and illusion are inherent aspects of the intimate sexual relationship. The challenge is not to eradicate these, but to develop interventions which acknowledge and respect their necessity while informing couples of the dangers involved.

In Part IV, ‘Responding to specific target groups’, the chapters present several aspects concerning the segments of the population particularly targeted by prevention and care measures. Four chapters discuss homosexual men, the largest group affected by HIV in Germany. Michael Bochow (Chapter 12) presents data from the National Gay Press Survey, which has been conducted at regular intervals since 1987. He discusses trends within the gay population over time, including the growing phenomenon of men of lower socioeconomic status being disproportionately affected by the disease. Rainer Herrn (Chapter 13) examines the unique situation of gay men from eastern Germany since the Wall fell, discussing how the characteristics of the prior East German society necessitate different approaches to prevention in that part of the country. Michael T. Wright (Chapter 18) and Rolf Rosenbrock (Chapter 19) look at the interplay between collective gay life and the epidemic. Wright presents evidence suggesting trauma reactions among gay men due to their community being disproportionately affected by the disease. He argues that these reactions resemble the ‘survivor syndrome’ found among other populations collectively faced with unusually high levels of disease and death. Rosenbrock considers the interaction between gay politics and AIDS politics, proposing that the epidemic has brought both positive and negative results to the gay liberation movement in Germany.

Also within the section concerning specific target groups is the contribution by Gundula Barsch (Chapter 14) in which the pioneering approach to drug use made possible by the HIV epidemic is presented. This approach emphasizes harm reduction and acceptance of drug using as the basis for intervention and policy. The ramifications of this approach are revolutionising drug prevention and treatment services in Germany. Cornelia Helfferich (Chapter 15) discusses risk perception among heterosexually active women, based on the results of national samples. Her analysis places HIV risk in the context of the other risks inherent in relationships, demonstrating that the perception and management of HIV risk is based on a host of social and relational factors. The unique situation of female prostitutes working on the border of Germany and Eastern European countries is discussed by Elfriede Steffan and Michael Kraus (Chapter 16). They present the work of the Umbrella Project which is designed to provide prevention services to that population. Finally, Doris Schaeffer (Chapter 17) discusses people with HIV/AIDS and the problems they encounter within the health care system. She argues that long overdue reforms within home care in Germany along with other deficits have led to mixed results as the system has attempted to cope with the changing needs of this patient group.

In Part V, ‘The future of AIDS policy and practice’, Rolf Rosenbrock, Doris Schaeffer and Martin Moers (Chapter 20) examine the process of ‘normalisation’ of AIDS in Germany; that is, the way in which HIV/AIDS has increasingly moved from the status of being an exceptional illness to a treatable condition. The authors depict the challenge now facing the German preventative and curative care system to adapt the innovations in AIDS prevention and care to other diseases. This challenge is made all the more difficult by the trend to re-medicalise the AIDS discourse and to neglect primary prevention, both in terms of resources and public attention.

It is our hope that this book not only provides documentation of HIV and AIDS in Germany for the years to come, but that it meaningfully contributes to the debate in industrialised countries about what we can learn from the AIDS epidemic so as to improve the effectiveness of public health and patient care more generally.

2 AIDS in a German context
A primer

Michael T. Wright

When HIV arrived in Germany in the early 1980s, there was already a dynamic landscape of tradition, law and organisational structure shaping and re-shaping society’s response to social and health care problems. It is not the intent here to take on the impossible task of describing in one chapter the intricacies of this landscape. However, in these few pages an attempt is made to offer a schematic map which points out some of the important landmarks along the way, thereby making the following chapters more readable. This will be done by presenting a series of terms alphabetised by their English translations. Each term will be defined in its own right and as it relates to the other entries. The symbol –> indicates that the word immediately following has its own entry. In some instances, the term is discussed explicitly by the authors in this volume. Where this is the case, the corresponding chapters are noted at the end of the entry. The terms included here represent important underlying assumptions and traditions which have shaped the response to HIV in Germany.

This chapter is meant to function as a reference within the course of reading the book as well to be a quick glossary of important terms for HIV in Germany, in general. For a more detailed description of the German health care system, the reader is referred to Knox (1993), Stone (1980), Rosenberg (1986), Webber (1992), Wysong and Abel (1996), and Kirkman-Liff (1990). An insightful comparison of the concept of solidarity (see definition below) as found in the US and Germany is offered by Reinhardt (1996).

AIDS Service Organisations (AIDS-Hilfen) The AIDS Service Organisations (ASOs) in Germany are voluntary organisations (non-profit making) with the mandate of providing various prevention and care services to the primarily affected groups. All ASOs receive the majority of their funding from public authorities and employ both paid and non-paid staff. Almost all ASOs are members of the –> Deutsche AIDS-Hilfe. (See Schilling, Chapter 8; Etgeton, Chapter 7; Frankenberg and Hanebeck, Chapter 4.)

Associations (Vereine, Verbände) There is no adequate English translation for the German words Vereine and Verbände, as these words denote particular organisational forms based in a specific cultural tradition. There is a joke which says that wherever three Germans are, there is at least one association. This alludes to the important role which clubs and associations of various sizes have within German society and to the cultural tendency to create formal organisations for each specific interest. Of course, associations of various sorts exist in all cultures where people are free to associate. Characteristically German, however, is the establishment of local, regional, and national chapters for each particular activity, with co-ordination structures and areas of responsibility being outlined for each organisational level. Already in 1983 the –> Deutsche AIDS-Hilfe was founded as the national organisation. Since that time over 120 other –> AIDS Service Organisations (ASOs) have been founded and nearly all of them are members of the national organisation. Although each ASO is incorporated separately and is technically not obliged to follow recommendations from the national office, the cultural tendency to create unifying regional and national structures and to identify common principles has resulted in a co-ordinated, relatively uniform, and geographically comprehensive network of HIV prevention in the country.

Deutsche AIDS-Hilfe, the National German AIDS Organisation The Deutsche AIDS-Hilfe (DAH), which translates literally as ‘German AIDS Assistance’, is the national federation of –> AIDS service organisations (ASOs) in Germany. The DAH is a voluntary organisation funded almost entirely by the –> Federal Ministry for Health through the –>Federal Centre for Health Education. The DAH has over 120 member ASOs which are themselves organised at the local and regional levels. The DAH acts as a lobby group for HIV at the national level, produces prevention concepts and materials for the primarily affected groups, and provides technical support for the work of its members. (See Schilling, Chapter 8; Etgeton, Chapter 7.)

Federal Centre for Health Education (Bundeszentrale für gesundheitliche Aufklärung, BZgA) The Federal Centre for Health Education (BZgA) is a governmental organisation which was set up to be the official provider of prevention campaigns to the general public regarding a variety of health issues. The BZgA is funded by the –> Federal Ministry for Health to conduct HIV prevention. The BZgA designs and implements campaigns at the national level for the general population and contracts with the –> Deutsche AIDS-Hilfe to provide prevention and education for the primari...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Figures
• Tables
• Contributors
• Acknowledgement
• Part I: Introduction
• Part II: History, Policy and Epidemiology
• Part III: Risk Perception and Decision Making In Safer Sex
• Part IV: Responding to Specific Target Groups
• Part V: The Future of AIDS Policy and Practice