BAND XII Aspects of AIDS and AIDS-HILFE in Germany ~D e u tsc h e """'.AIDS-Hilfe e.V. AIDS-FORUM D.A.H. Band XII Aspects of AI DS and AIDS-HILFE in Germany © Deutsche AIDS-Hilfe e.V. DieffenbachstraBe 33 D-10967 Berl i n Mai 1993 Redaktion: Klaus-Dieter BeiBwenger, Christine H6pfner Gestaltung: Detlev Pusch Satz: CaJa Carmen Janiesch Druck: Oktoberdruck alle Berlin ISSN 0937-1931 Spendenkonto: Deutsche Apotheker- und Arztebank, Berlin, Konto 000 3500 000 (BLZ 10090603). Die DAH. ist als gemeinnOtzig und mildtatig und damit als besonders f6rderungswOrdig anerkannt. Spenden sind daher steuerabzugsfahig. CONTENTS Preface S On the History of the AIDS-Hilfe Kajo Pieper 9 Reactions of the Gay Community to AIDS inin East and West Berlin Michael Bochow 19 Gay Men and Health Promotion Rainer Schilling 47 Harm Reduction and the Political Concept of the "War on Drugs" in Germany Ingo IIjallja Michels 51 JES - History, Demands and Future Werner Hermann 65 Therapy Studies, Ethics and Design -- Involving Directly Affected People inin Clinical Trials Matthias Wienold 75 Caring for Out-Patients with AIDS Beate Steven 83 Non-Governmental Organizations inin Europe: Networking asäs a Tool for Information,Information, Education and Prevention Petra Narimani 95 Legal Measures Employed in Germany for Coping with AIDS Friedrich Baumhauer 101 PREFACEPREFACE The Deutsche AIDS-Hilfe (DAH(D.A. H..)) isis thethe only organization worldwide which combines self-help and serviceService functionsfunctions under one roof:roof: self-help of people with HIV/AIDS, of people fromfrom thethe main groups affected, thethe gay men and drug users, of partners, friendsfriends and relations;relations; serviceService functionsfunctions such asäs counselling and care, setting up self-help structures, education work and media productionsproductions.. The theoretical basis isis thethe health strategy of thethe WHO. Health and illnessillness are no longerlanger seen asäs being problems only of the body -- theirtheir mental and social components are also seen. They are dependent on contentment, social relationships, food, accommodation, work, attention from other people, and the general social climateclimate.. Prevention in the groups primarily affected means for the AIDS-Hilfe groups: providing people with knowledge, enabling them to determine their actions themselves. That can mean ee..gg.. handling risk situations, doing some­some- thing for their well-being. Whether infected or not, whether healthy or sick, effective prevention strengthens crumbling self-confidence, breaks the isola­isola- tion of the individual, and gives added meaning to the solidarity many people talk of, within the various scenes, but also between them. Prevention means for AIDS-Hilfe intervening wherever people are being used and manipulated, or discriminated and made outsiders, turning those affected into "cases" for doctors, researchers, lawyers and politicians.politicians. It also means public activity for a more level-headed approach to the problems of AIDS, with more consideration being shown for the interests of people with HIV/AIDS and the main groups affected. In Germany the AIDS prevention campaign is run by the Federal Centre for Health Education and the D.D.A.A.HH.. In a division of labour the government body provides Informationinformation for the general public, whereas the private assodationassociation concentrates on producing specific media for the groups particularly affected byAIDS.by AIDS. Such a partnership - when it works -- can offer advantages.advantages. The D.D.A.A.Hhl.. isis right inin thethe thickthick of AIDS matters. It therefore has credibility when it comes to acting quickly toto prevent problems building up -- a good example of efficient subsidiarity. The government organization, forfor itsits part, provides much of thethe fundingfunding which thethe private association would not be able toto mobilize. The D.D.A.A.H.,H., locatedlocated inin Berlin, isis thethe umbrella organization forfor samesome 130 locallocal AIDS-Hilfe groups inin Germany.Germany. Under thethe division of labourlabour with thesethese groupsgroups thethe taskstasks of thethe D.DAHA. H.. include:include: 5 • Planning and carrying out national information and education work; • Initiating and supporting the self-organization of people with HIV/AIDS; • Developing strategies for medical Servicesservices and psycho-social care; • Developing, producing and distributing information material; • Providing trainingtraining and further training for voluntary and full-time staff of local groups; • Public relations work; • Acting äsas organ and mouthpiece for the localgroups;local groups; • Representing political interests at national level. The tasks of the local AIDS-Hilfe groups include: .• Setting up self-help and discussion groups for people with HIV and people with AIDS, for their friends and relations; setting up Safer Sex discussion groups; .• Distributing Informationinformation material; .• Providing Informationinformation and counselling in the gay scene (bars, saunas), in the drug scene, in red-light districts; .• Looking after people with HIV/AIDS either at homehörne (including non-non­ stationary medical care), in hospital, in prison or in drug therapy institutions; .• Personal and telephone counselling for people from other groups of the population; .• Education and information meetings for various population and occupa­occupa- tional groups; .• Local public relations work. This publication gives the international readership an overview of its activitiesartivities and its ten-year history. The publication coincides with the IX.IX. International Conference on AIDS, being held from 7th to the 11th June 1993 in Berlin. Klaus-Dieter BeiBwenger,Beißwenger, Christine HopfnerHöpfner Print media office Berlin, May 1993 6 AIDS-HILFE ORGANIZATIONS IN GERMANY ______________________ Flensburg ___________________ Kiel Kiel _______________________ NeumünsterNeumOnster _ Heide. Rostock _-======--=========== LübeckHeide,Lubeck Rostock Wilhelmshaven __________ _____________________ Elmshorn _ ________________ MöllnMelln ________ Hamburg Neubrandenbg. Lüneburgg Oldenburg ____________ _ Bremen ______ ==================LUnebur Lingen ________ ___________________ Celle Lingen . Celle Potsdam, Berlin Nordhorn _ BrandenburgPotsdam, Berlin Rhefne,Rheine, OsnabrückOsnabruckNordhorn ::======--_ ______ -========== Hannover, Wolfsburg Ahaus _____ _ ________________ Braunschweig Münster,Munster, Bielefeld _____________ _ _____________ Hildesheim, Hamm, Ahlen,Ablen, PaderbornPaderbom Magdeburg cklicldinghausen,nghausen, Unna, Soest _________________ ~:lg~;s~~JIHalberstadt loiottrop,ttrop, Herne, Dortmund Oberhausen, Bochum Gelsenkirchen, Duisburg Essen, Haqen, Krefeld ~~~~~~:(~6s~~iJ~~Wuppertal, Düsseldorf ____________________ Gettingen iersen, Mönchenqladbach Göttingen lersen,N~~~S~lbt~~~~~~~ Reinhausen Neuss, Lüdenscheid > . < Halle )li)!ingen,ngen,Olpe, Olpe, leLeverkusenverkusen ------------ _ _ __ Kassel, Leipzig ,1 ~:~;~Ie~eipzigHalleDresden Aa~~~~Köln -_----- =::-:========= Aachen - Troisdorf, Siegen _ Erfurt, Weimar Troisdorf.Bonn, Marburg Siegen ::=====-=-====--__ _____ ---::======= ChemnitzErfurt, Weimar ___________ Zwickau t Zwickau GieBen ____________ _ ____________________ Fulda Gießen Fulda Koblenz Frankfurt 'iesbaden, OffenbachKoblenz 'iesbaden, Offenbach ==========::-:= _ ______________ Bamberg Trier, Mainz _ __________ Bamberg ____________________ Wurzburg Würzburg Darmstadt KaiserslauternKaiserslautem .r»rbfücken,brOcken, DarmstadtMannheim ~~~~~~~~~;~_ Heidelberg Nürnberg Landau _ Landau NurnbergFremdingen ~~i~~;~~~Heilbronn -================ _____________, _ Karlsruhe ___________ Regensburg Pforzheim PforzheimStuttgart ============--__ Tubingen ______________ Tübingen _ ___________________ Ulm Ulm _________________ Augsburg Augsburg ______________ Munchen Freiburg _ ______ Konstanz _____________ 7 ON THE HISTORYHISTORY OF THE AIDS-HILFE Kajo Pieper, Dr. phil., formerformer board member of thethe Deutsche AIDS-Hilfe e.V.e.V. (1988-1990) On 6 June 1983, the German public became acquainted with a new diseasedisease.. On that day, the West German weekly newsmagazine Der Spiegel published itsits firstfirst cover story on this new illness:illness: "AIDS: the Fatal Affliction/AAfflirtion/A Mysterious Disease." At that point in time, however, AIDS was not a new disease for certain circles which had become more aware. Der Spiegel reported that "100 suspected susperted cases and six deaths" had until that time become known inin West Germany. The Ger­Ger- man Federal Ministry of Health had warned physicians to take special precau­precau- tionary measures in treatment of AIDS victims. Even the German Minister for Youth, Family, and Health - at that time Heiner Geissler - had taken cognizance of AIDS and had, in the month before the article appeared, "called out for aa struggle against 'this dangerous disease'."disease'. " (All citations and references here are from:from: Der Spiegel, No. 23, 6 JuneJune1983, 1983, pp.. 144 ffff.).) It was only a few months later, beginning inin October of 1983, that the first AIDS-Hilfe organizations were founded in Germany: in Munich and BerlinBerlin.. A number of additional organizations were soon founded in the following year of 1984. The first founding boom of German AIDS-Hilfen occurred in 1985, with organizing activities continuing at a relatively low level in the following years.years. During 1988 and 1989, such organizational activities reached a new peak. By now, in 1993,