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 Oldenburg ______======LUneburBremen

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, there are appropriately 120 AIDS organizations in Ger­Ger- many, most ofwhichof which are organized asäs members in the umbrella organization Deutsche AIDS-Hilfe ee..V. (DAH.)(D. A. H.) Writing on the history of German AIDS-Hilfe organizations at this point in time - even in the form of an interim report - has proved to be a difficult ven­ven- ture: one necessarily associated with numerous shortcomings.shortcomings . The reasons be-be­ hind this Situationsituation are many and various: the great variety and divergence of the subjective recollections of the "founding fathers"; the lack of sufficient detachment of those who were very involved in the AIDS-Hilfe movement, or of those who are still active there; äsas weilwell äsas the countless hurts, the perplexity and the bewilderment, and the fears and anxieties - to which those active in AIDS work were and are still being subjected - and which are all still too fresh and too little reflected upon.upon. As a result, this attempt represents a further attempt to become more close-close­ ly acquainted with the history of German AIDS-Hilfen.AIDS-Hilfen. In any case, it will at-at­ tempt toto present one aspect of this history - and will be presented here with aa goodly number of reservations of relativizing nature. Il can predict already at

9 thisthis point that many other women and men involved in AIDS-Hilfe will recall the history of their work in AIDS-Hilfen,AIDS-Hi/fen, and the work of other AIDS-Hilfen, in a different fashion. lI also know very well that "erroneous" emphasis may appear in my account - and that even accusations of polluting our own well could easily turn up. But lI am prepared to accept the risks, and Il willingly admit from the be-be­ ginning that my account here is subjectively shaded. This attempt for me means thethe opportunity to reflect upon and to assimilate a period of six years of collaboration in AIDS-Hilfe including two years in which Il undertook responsibility for AIDS-Hilfe with others on the German federal level. First of all, in looking back, we cannot help but consider the marvelous achievements which took place averover the six to seven years from the end of 1983 to the end of 1989, the period in which approximately 100 German AIDS associations were founded and officially recognized äsas nonprofit, charitable organizations. This has also meant that between 4000 and 6000 men and wo-wo­ men have, on a voluntary and honorary basis, offered their servicesServices to the work of the AIDS-Hilfe: frequently under tremendous physical and psychic pressure, and often under extremely constricting structural conditions. These developments alone deserve recognition asäs a unique phenomenon in German history. An extraordinary diversity of innumerable motivations and objectives, however, seethes beneath the "smooth skin" of the German AIDS-Hilfe move­move- ment which Il have sketched here. The following sketch of the history of the founding of AIDS-Hilfe organizations will hopefully make this a bit clearer. With reference still to the period from 1983 to the end of 1989, we may distinguish among the following three phases of founding activities, although chronologically they are not neatly separated from each other:

1. The period from 1983 up to around the middle and end of 1985: The first AIDS groups were organized by gay-motivated activists, HIV-positive orga­orga- nizers, and circles of their friends and acquaintances. The first groups pri­pri- marily came to life in German metropolitan and megalopolis centers which featured distinctively developed gay subcultures, or, at least,least, they were founded in the immediate environment of these areas. 2. The period until around 1987 and 1988 was distinguished by work which made up for lostlost time inin relatively largelarge and middle-sized German cities. The group work was still strongly influencedinfluenced by gay contributors, but a growing tendency became evident inin the direction of participation by professionalProfessional specialists inin social work and social pedagogy. 3. Around 1987 to 1989 furtherfurther regionalizationregionalization of the AIDS-Hilfe became apparent, with increasingincreasing "non-gay" orientation. There was significant founding influenceinfluence from drug counseling centers, asäs well asäs further further profes­profes- sionalization by social workers.

Il admit that this classification intointo phases isis ratherrather vague and impreciseimprecise with respect to time spans,Spans, founding motivation, and nature of participation inin thethe organizational work. Il nevertheless consider this this breakdown useful to enable a first approximation towardtoward gaining insightsinsights intointo influences,influences, motivations, and phenomena involvinginvolving the German AIDS-Hilfe organizations.

10 It is undisputed that initialinitial founding action for AIDS-Hilfe organizations -- and this applies not only to Munich and Berlin - took place inin those metro­metro- politan areas in which the first and most numerous AIDS cases and deaths were registered. Precisely because AIDS struck gays - more strikingly inin the be­be- ginning of AIDS-Hilfe work than now - gays represented, inin the traditional sense, the group predominantly involved.involved. These people with AIDS underwent diagnosis and therapy inin those medical centers - usually university medical complexes - which were, for various reasons, more willing and able than were other facilities to confront the challenge presented by new syndromes, and to carry out the associated research workwork.. The availability of superior medical therapy and research infrastructureinfrastructure inin urban centers such asäs Berlin, Munich, Hamburg, and Frankfurt coincided merely by chanceChance with the existence of substantial, distinctive, and differentiated gay subcultures inin precisely these-these German citiescities.. Even at the risk of sounding cynical, it may be pointed out that the gay subculture of largelarge West German cities provided the locallylocally available medical infrastructure with the cases required for research of the new symptomsSymptoms complex AIDSAIDS.. The powerlessness of modern medicine and the fear among the gay sub­sub- culture - manifested often enough, even today, asäs inflexibleinflexible forms of psycho­psycho- logical repression - were doubtless not insignificantinsignificant factors inin prompting the search for new, different, and mutual approaches toward coping with the challenges presented by AIDSAIDS.. An additional element was the fact that there were still remnants of a gay movement, particularly inin the gay centerscenters:: inin other words, gays who had gained experience inin political movements not associated with or constrained by government factors, and who were willing and able to employ this experience for the attainment of new objectivesobjectives. . Notwithstanding the aspects already stated here, it is definitely not possible to comprehend Phase 1 of this process without at the same time being able to realistically imagine the general political situationSituation inin West Germany during those yearsyears.. A so-called constructive vote of no confidence inin October of 1982 brought down the national ruling coalition which had includedincluded the Social Democratic Party and the Free Democratic PartyParty.. The subsequent new elec­elec- tions for the lower house (Bundestag) inin 1983 formally established the new coalition of Christian Democrats (CDU), Free Democrats (FDP), and Christian Social Democrats (CSU).(C5U). Helmut Kohl, who was elected Chancellor of West Germany, declared the beginning of a moral and spiritual transformationtransformation. . Many so-called fringe groups understood this declaration asäs the beginning of a new phase of repression against themthem. . Harsh changes in the climate of social legislation and political discussions - for example, on the topics of foreigners in GermanyGermany,, asylum seekers, and abusers of welfare privilegesPrivileges - confirmed these fearsfears.. The fact that many inin West Germany had evaluated AIDS asäs God's revenge for a depraved way of life,life, created additional fearsfears:: not only fear of AIDS, but also fear that still existing refuges of tolerance for gays would be rigorously closed. Political action inin dealing with AIDS and AIDS Hilfe organizations was strongly influenced by two essential factorsfactors.. First was the lack of sufficient knowledge of AIDS, asäs well asäs the resultant therapeutic powerlessness of medical possibilities. Second was the fact the primary group of those afflicted

11 by AIDS was - and still isis - the gay populationpopulation.. This latterlatter aspect was elabo­elabo- rated on asäs follows by Professor DrDr.. Steinbach, ofthe German Federal Ministry for Youth, Family, WomenWomen's's Affairs, and Health, then responsible for this question complexcomplex:: "If AIDS were a bakersbakers'' disease, then we would have to 'suppress''suppress' the bakers - we'd have to harass them and penalize them. But it'sit's the homosexuals, and they suffer from a heavy historical burdenbürden of socio-political dimensionsdimensions.. This fact makes the situationSituation incredibly more complicated but itit does not excuse us, in the context of the entire epidemiologic and hygienic problem complex, from taking account of this fact and nevertheless implementingimplementing the necessary measuresmeasures.." (from(from Der Spiegel, No. 52, 1984, p. 31) In this situation,Situation, it was possible for a German federal minister, in the person of Rita SOssmuth,Süssmuth, to truly beneficially influenceinfluence the political processes underway. SheShe,, for example, was able to confine the public repressions and mandatory measures which threatened to develop around this timetime:: most notably, in the federal State of Bavaria under the influence of the politician GauweilerGauweiler,, where such measures received especially pronounced supportsupport.. Manifestations of the incipientincipient politicization of AIDS included the action of the AIDS Investigating Committee of the German Bundestag, asäs well asäs the establishment of a national AIDS Commission inin the German Federal Ministry for Youth, FamilyFamily,, Women's Affairs, and HealthHealth.. At the same time, efforts increased for providing psycho-social servicesServices and care for AIDS victimsvictims.. These efforts were exemplified inin the foundation of the German AIDS foundation called ""positivpositiv leben"leben",, and somewhat later inin the National AIDS FoundationFoundation.. An additional indication for such politicization was readiness to ""invest"invest" considerable sums of money inin HIV researchresearch,, asäs well asäs inin model projects with various objectives. These processes initially tended - often without conscious intentintent - to attenuate the odium of depravity originally connectedconnerted with AIDS. AIDS had inin fact become a political matter, furnished with a relatively largelarge amount of moneymoney.. And this meant that prestige beckoned to researchers able to achieve new insights into HIVHIV.. And a new field of activity opened for the professions of social work and social pedagogy - the only aspect of expansion on a sector of the market which otherwise promised no chanceChance of additional jobsJobs.. This was one reason why more and more social workers rrushedushed intointo AIDS­AIDS- Hilfe organizations and that these women andancf men otherwise began to play an increasingly active role inin the founding of new AIDS-HilfenAIDS-Hilfen.. IndividualIndividual men and women from AIDS-Hilfen also accepted lectureshiplectureship responsibilities at colleges and universities involvedinvolved with the problemproblem.. Special curricula for highlighting and ongoing-study courses were even set upup.. The consequence for the AIDS-Hilfen was that they became professionalized at a breathtaking raterate.. Money and jobsJobs took oveaverr the roles of recognition which had been earlier granted for work on an voluntary basisbasis.. Some of those involved have interpreted this development asäs indirectindirect public recognition -- and legitimation - of their own being gay, with the not infrequentlyinfrequently observed effect that they have not expressed or livedlived out their being gay asäs clearly asäs had been the case in earlier years. Talk about "degayification"degayification"" made the rounds. Such talk was no more right than it was wrong.

12 Whoever callscalls toto mindmind AIDS-HilfeAIDS-Hilfe membersmembers'' conventionsconventions ofof 19871987 oorr 19881988 associates thesethese memories withwith large-scalelarge-scale gaygay meetingsmeetings.. AsAs thethe yearsyears passed,passed, howeverhowever,, itit becamebecame impossibleimpossible toto overlook thethe increasingincreasing numbernumber of women working inin AIDS-HilfenAIDS-Hilfen,, asäs wellwell asäs thethe involvedinvolved men whowho made iitt clearclear inin private circles -- or even fromfrom thethe lecternlectern -- thatthat theythey were notnot gay. ItIt would also be just asäs wrong toto denydeny thethe presencepresence of thosethose who stood up forfor theirtheir work inin thethe AIDS-HilfeAIDS-Hilfe,, but who also absolutely avoided definitely comingcoming on asäs gaygay.. Work inin AIDS-HAIDS-Hilfeilfe organizations thereforetherefore attained a certaincertain distincdistinc-­ ttion;ion; at thethe same timetime,, howeverhowever,, thethe regaregardrd forfor being gay thatthat somesame wished forfor,, or were content to merely accept, did not go hand inin hand with thisthis dede-­ velopmentvelopment. . The sentence about degayification of thethe AIDS-Hilfen actually meant toto say that the originally almost purely gay organizations had become a more multimulti-­ faceted endeavorendeavor.. One of thethe significant factorsfactors contributing toto thisthis devedeve-­ lopmentlopment was the fact thatthat more and more varied groups - gay and not gay -- had become organized inin AIDSAIDS-Hilfen.-Hilfen. This period also saw the beginning of efforts made by the AIDS-Hilfe organizations and by the DD..AA..H. to avoid being labeledlabeled strictly asäs the organiorgani-­ zations responsible for gaysgays.. Rather, they attempted to gain recognition asäs the organizations generally competent and accountable for AIDS informationInformation work. The claim for exclusiveexdusive representation inin the area of AIDS informationInformation work was, in addition to others, one motivating ground for softer-pedaling to the public the still rrecentecent and predominantly gay history of AIDS work, asäs wellweil äsas the fact that many AIDS-Hilfe workers were gaygay.. In the most recent founding work of AIDS-Hilfen in Germany, this tendency has definitely attained a new emphasis: beginning about 1987 and 19881988,, AIDS-AIDS­ HilfeHi lfe organizations have been founded to a great extent in association with drug counseling centers, or even with support from these centers.centers. It was no langerlonger the case that the gay iimpetusmpetus was the driving force behind many of the new AIDS-Hilfen.AIDS-Hilfen. Instead, the Situationsituation of the people with AIDS,AIDS, increasingly increasingly composed of men and women drug users, prompted Professionalprofessional drug counselors to extend their previously limited area of activity to the AIDS-AIDS­ Hilfen.Hilfen. This development was to samesome extent a reaction to the fact that more and more male and female drug users had been diagnosed äsas HIV positive, and/or became illill of AIDS.AIDS. Also to samesome extent,extent, this development anticipated the expected development in the drug area of AIDS:AIDS: for example, the organization of a Drug Section inin the D.D.A.A.HH.. in 1987.1987. This process was also accompanied by a more pronounced tendencytendency toward professionalism.professionalism. The greater emphasis placed on drug work placed us gays inin the AIDS-Hilfen inin a dilemma.dilemma. On thethe one hand, gays were neither willing nor able toto deny thethe necessity of suchsuch a development -- especially since thethe new fieldfield of activity in-in­ volving drug work offered thethe possibility of eliminating thethe exclusive iden-iden­ tificationtification inin thethe public eye of AIDS with being gay. This Situationsituation was -- and still isis -- countered, on thethe other hand, by thethe factfact thatthat thethe social livingliving conditions and behavioralbehavioral patternspatterns of men and women drug users appeared and still appearappear -- perhapsperhaps unavoidablyunavoidably -- forfor thethe most part foreign,foreign, incomprehensible,incomprehensible, and alarmingalarming forfor gays.gays.

13 In a number of AIDS-Hilfe organizations, it was possible after difficult initial phases toto very successfully overcome and to constructively work with such incompatibleincompatible factors and such tendencies toward irreconcilability.irreconcilability. There have been other groups, however, in which it has not proved possible to develop aa mutual image. In such cases, the general result after tedious initial work has been suppression of the drug aspect of the image. Less frequently has it been the case that the gays are the ones to retreat sulkily. The founding phases of AIDS-Hilfe organizations roughly sketched here correspond conspicuously to the development of AIDS cases according to regions and groups afflicted.afflicted. They furthermore correspond to numerous other developments which can by no means be completely listed and much less described here.here. A number of comments, however, will perhaps suffice to en-en­ courage further analysis. It has been observed - beginning roughly with the onset of the stated professionalization tendencies, and parallel with increasing publicity of AIDSAIDS­ - that the impression became established in wide sectors of public opinion that being gay and AIDS were more or less one and the same. Such mistaken preconceptions have demanded a double degree of self-assurance from the AIDS-Hilfe staff, once they detect that they have been identified asäs gay merely by virtue of their activity in AIDS-Hilfe. Double because of the self-assurance required for being gay, and for being active in AIDS issues - since those in­in- volved in the latter are labeled often enough asäs HIV positive, or asäs "AIDS people,"people, " merely because of such an associationassociation.. In such a situation,Situation, it is logi­logi- cally understandable for the followingfollowing::

•. that those so involved gladly turned over to professionalsProfessionals the whole busi­busi- ness of representing AIDS-Hilfe toward the outside •. that the share of gay staff and their life style was fully accepted on the internal level at AIDS-Hilfe,AIDS-Hil-fe, but that it should be soft-pushed with respect to the public •. that the claim was vigorously pressed to represent all sectors of the popu­popu- lation asäs the competent and responsible organization with respect to AIDS.

An initial countermovement materialized lessless on the basis of experience and insights gained in AIDS-Hilfe thanthan asäs a result of impulsesimpulses from the outside. Noteworthy here is above all the founding and thethe generally developing acti­acti- vities of the German Federal Association for Homosexuality (Bundesverband(Bundesverband Homosexualitat,Homosexualität, BVH). Now, asäs initially,initially, one of itsits prime motivations - despite and because of AIDS - isis without doubt thethe formulation, the focussing, and the political and social representationrepresentation of interestsinterests characteristically involvinginvolving gaysgays.. It would not have really been possible for relationshipsrelationships between thethe AIDS­AIDS- Hilfe organizations - especially the the D.A.H.D.A. hl. - and the German Federal Associa­Associa- tion for Homosexuality (BVH)(BVH) to remainremain peaceful and harmonious. One reason was that many gays, with emphasis on being gay, now asäs before became engaged inin AIDS-Hilfen, and thatthat theythey asäs a natural matter of course emphasized the AIDS-Hilfe aspects above those those of gay political issues.issues. Indeed,Indeed, very few of these members were able to contribute actively inin both organi-

1414 zations. An additional factor factor was was the the factfact that that governmentgovernment subsidies,subsidies, or or eveneven financing,financing, forfor AIDS-Hilfen tremendously tremendously outweighedoutweighed thethe financialfinancial resourcesresources of thethe BVH. A number ofof BVHBVH activitiesactivities whichwhich were nearlynearly doomeddoomed forfor finan­finan- cial reasonsreasons w wereere rescuedrescued and implementedimplemented by support support fromfrom AIDS-HilfeAIDS-Hilfe.. From From thethe standpoint of a numbernumber of BVH representativesrepresentatives,, such supportSupport action should properly have takentaken place more frequentlyfrequently and inin more generous mannermanner.. A number of AIDS-Hilfe staff, on thethe other handband,, have consideredconsidered such support asäs misuse of funds,funds, and would have preferred toto see suchsuch activities curtailedcurtailed.. Behind thethe most apparent conflict overaver fundingfunding lurkedlurked a more concealed struggle involvinginvolving professionalProfessional jealousyjealousy:: one which concerned competition overaver the possibilities of eexertingxerting an influenceinfluence on society -- possibilities which had inin all likelihoodlikelihood been considerably exaggerated inin thethe expectation ofofthe the partiesparties.. Even deeper behind thesethese issuesissues laylay a furtherfurther issueissue:: irritationirritation which arose from the expectations and objectives shared by each of thethe organi­organi- zations. IndeedIndeed:: gay politics could not then, and cannot now, ignoreignore AIDS - - and AIDS-Hilfe could not, and cannot, ignoreignore gay politicspolitics.. In addition to the intersectionintersection between sets composed of BVH and DD..A.H.!AIDS-Hilfen,A. H. /AIDS-Hilfen, there are now asäs before independent fields of activity. Without doubt, it has for easily understood reasons proved more difficult for BVH than for DD..A.H.A. H. to define these stand-alone areas. This tense relationship, which occasionally demonstrates a degree of absurdity, can be illustrated using the following exampleexample.. In 1989 members of BVH initiated a campaign advocating deletion of Section 17S175 from the German Criminal Code. BVH championed this campaign asäs its own issue and worked to rally support for it, while basing its efforts on an urgent recommendation formulated by the Official Investigating Committee of the German Bundestag on AIDS.AIDS. This recommendation read: "Examination is required of the possibility of revision of the Criminal Code with the objective of deleting the Special Stipulation of Section 175 of the Criminal Code, and of implementation of a uniform protective regulation for male and female youth.youth."" (source:(source: "AIDS:"AIDS: Fakten und Konsequenzen,Konsequenzen,"" taken from the series "Zur Sache", no.no. 3,3,1988,1988, p.p. 23) It was precisely thisthis approach of argumentation which D.D.A.A.H. refused to accept at thatthat time:time: i.i.ee.,., that AIDS be used äsas "Justification""justification" for an already legi-legi­ timatetimate and necessary socio-political demand. D.D.A.A.H.H. reasoned that deletion of Section 175 fromfrom thethe German Criminal Code was langlong overdue,overdue, regardless of AIDS, and further,further, thatthat it represented a weakening of gay-political argu-argu­ mentation toto exploit AIDS äsas justificationjustification in thisthis context. As a result, so the argument went, thisthis approach amounted to superfluous and potentially damaging resortresort toto an erroneous argument. The world apparently topsy-turvy:topsy-turvy: here was D.D.A.H.,A. H., defending "pure gay-gay­ political principles" against BVH,BVH, thethe rightful guardian of such theory.theory. Despite thisthis confrontation, D.D.A.A.HH.. and BVH inin factfact laterlater conducted a mutual conven-conven­ tiontion inin Bonn organizedorganized forfor thethe purpose of deleting Section 175. At thisthis conventionconvention itit became definitely clear -- toto thethe extent thatthat itit had not already beenbeen so before -- thatthat itit was hardly possible toto logicallylogically followfollow thethe position D.D.A.A.HH.. hadhad assumedassumed onon pure principles.

1515 AtAt thisthis convention itit furthermorefurthermore became clear thatthat agreement on sub-sub­ stance did not exist inin all points between thethe D.D.A.A.H.H. äsas national federation,federation, and thethe ground-roots groups consisting of individualindividual AIDS-Hilfe organizations. Additional suchsuch examples are indicatedindicated inin thethe followingfollowing sketches:

.• One AIDS-Hilfe organization allegedly refused to distribute D.D.A.HA. H.. inform-inform­ ation material, inin thethe form of brochures and posters, because it was "too gay."gay." .• Another AIDS-Hilfe attempted to sue D.D.A.A.H.H. after D.D.A.H.A. H. had provided addresses of AIDS-Hilfe member groups to a gay Publishingpublishing house, for the purpose of indicating on a new addition of a gay calendar the AIDS-Hilfen äsas organizations essential for gays.gays.

It is not pure coincidence which prompted me to mention precisely these episodes: indeed, they describe the gay-political dilemma from other per-per­ spectives such äsas this - a dilemma in which D.D.A.HA. H.. and the individual AIDS-AIDS­ Hilfen found themselves, and can easily still find themselvesthemselves,, again and again.again. From the very beginning, impulsesImpulses and reactions from the D.D.A.HA. H.. member groups have prompted DD..A.HA. H.. to concentrate its efforts on gay men asäs target group. For this purpose D.A.HD.A. H.. has developed a great number and variety of materials:materials: posters, brochures, folders, comics, and video clipsclips.. Today asäs before, the characteristic feature of all of these materials is a language oriented to this target group, äsas well asäs provision of more than just information:information: ii..ee.,., the promotion of acceptance of gay lifelife styles - not only among gays, but also among the hetero population. The main effort of D.A.H.D.A. H. and the AIDS-Hilfe organizations which support itit is to achieve the goal which they themselves have established: work toward the prevention of AIDSAIDS.. The three associated primary servicesServices performed by AIDS-Hilfen are informative work, counseling, and carecare.. Counseling and care are relatively uncontroversial: telephonetelephone counseling asäs well asäs confidential consultation on an individual, man-to-man basis, are part of thethe core offerings of any AIDS-Hilfe organizationorganization. . Just as äs essential isis the the offering to assist persons with HIV/AIDS to receive care as äs it it isis individuallyindividually required required -- insofarinsofar as äs men and women providing AIDS carecare are inin factfact availableavailable.. On the other hand, thethe goal of informativeinformative work -- asäs thethe only sensible and effective typetype of prophylaxis -- has indeedindeed been a controversialcontroversial pointpoint.. Rela­Rela- tivelytively widely accepted here, however, are thethe followingfollowing effortsefforts:: provisionProvision of informationinformation to interestedinterested parties on HIV/AIDS, on thethe dangers of infection,infection, on thethe possibilities of prophylaxisprophylaxis,, on thethe possibilities of treatment,treatment, and on ways toto avoid or toto delay outbreak of thethe disease -- inin suchsuch a manner thatthat thosethose interestedinterested can assimilate thisthis information,Information, learnlearn toto livelive with itit andand handle it,it, and be capablecapable of allowing itit toto becomebecome relevantrelevant forfor theirtheir actions andand behaviorbehavior.. A history of GermanGerman AIDS-HilfeAIDS-Hilfe could indeedindeed bebe writtenwritten usingusing asäs leitmotifleitmotif thethe strugglesstruggles whichwhich havehave takentaken placeplace onon thethe conflictingconflicting viewpointsviewpoints and strategiesstrategies involvinginvolving informativeinformative AIDSAIDS workwork..

The basicbasic messagemessage of allall AIDS-HilfeAIDS-Hilfe informative informative workwork reads:reads: HIV/AIDSHIV/AIDS repre­ repre- sentssents an an actual actual danger. Prophylaxis Prophylaxis in in the the form form of of protection protection from from possiblepossible HIV HIV

1616 infection is, however, possible if "safer sex" isis practiced. From the beginning, however, even this message was never uncontroversial: "safer sex" is,is, after all, not really entirely safe. Even those who practice only "safer sex" could indeedindeed become infected with HIV. InIn the final analysis, there isis no real, total protection from possible HIV infectioninfection - except by completely giving up sex with other men or women.

17

REACTIONS OF THE GAY COMMUNITY TO AIDS IN EASTEASTAND AND WEST BERLIN

Michael Bochow, Dr. rer. polo,pol., social scientist, Gese"schaftGesellschaft furfür interdisziplinareinterdisziplinäre Sozialforschung in Anwendung mbHmbhl (lntersofia),(Intersofia), Berlin

I/ dedicate this article to the memory of Andreas Salmen, who was one of the most importantimportant AIDS-activists inin the 1980's inin West Berlin

Acknowledgements From the very beginning inin 1983, a great many gay men were involvedinvolved inin campaigns to prevent a further dramatic increaseincrease inin HIV and AIDS inin West BerlinBerlin.. Thus when Il began to write this chapter itit was obvious to me that lI should talk to those involvedinvolved and take fullfüll account of their pointpo/nt of view.view. All of those Il consulted took great time and trouble inin supplying exact answers to my many questions and Il would likelike to give them my very heartfelt thanks. InIn particular Il wish to thank Sabine Lange, without whom the Deutsche AIDS­AIDS- Hilfe would never have been so purposefully founded inin 1983, Stefan Reiss from the first Deutsche AIDS-Hilfe board, and Gerd Paul, the chairperson of the second board from 1985 to 1987.1987. Further thanks and gratitude are due to Egmont Fassbinder, Karl Lemmen, Joachim MOller,Müller, Klaus Nolden,Holden, Rolf Rosenbrock and Marc Wiltzius who supplied me with many useful insightsinsights intointo the development of AIDS campaigns inin West Berlin, and to GOnterGünter Grau, Rainer Metz and Hubert Thinius who were very illuminatingilluminating about developments inin the east part of the city. VlrichUlrich Marcus of the AIDS Center of the Federal Health Office inin West Berlin was extremely helpful inin providing me with epidemiological material on the West German federal states and West Berlin, and Wolfgang Kiehl, who up to the end of February 1991 worked at the Central InstituteInstitute for Hygiene, Microbiology and Epidemioloy inin East Berlin and was a mine of informationInformation about the tem'toryterritory of the former German Democratic Republic. Last but not least the Prinz Eisenherz bookshop collective has to be mentioned who keptkept me so efficiently supplied with specialist literatureliterature and who have built up the most comprehensivecomprehens/ve department of sociological and psychological literatureliterature on -4/DSAIDS and gay men inin Berlin.

Sophinette Becker, Martin Dannecker and Albert Eckert all read and generously commented on the draft of this manuscript. Margret Meyer showed inexhaustable patience and good humor inin typing the various drafts of the manuscript and itsits many insertions,insertions, and Paul Morland considerable resourcefulness inin translating the whole intointo itsits readablereadable English equivalent.

19 The Berlin Gay Scene before AIDS

During thethe lastlast decade of thethe nineteenth century Berlin was already aa flourishingflourishing gay capital; during thethe Weimar Republic inin the 1920's, however, itsits reputation spread farfar beyond the confines of thethe German-speaking world. In the period after thethe Second World War, even though it was no langerlonger thethe capital and had dramatically lost all of its former economic importance, West Berlin developed intointo a center for homosexual men in Germany, a process unimpeded bytheby the building oftheof the Berlin Wall bytheby the GDR government in 1961. Indeed, it is probable that the resulting confined "insular" Situationsituation strengthened West Berlin's importance äsas a gay metropole. To counter the city's political and econ-econ­ omic decline successive federal governments, regardless of their political co-co­ louring, pumped massive subsidies into West Berlin cultural, scientific and touristic spheres. Such permanent windfalls helped to create a variety of little ecological havens which served to attrartattract many young people with non-non­ conformist political ideas and life styles to the citycity.. One unique and valuable feature of life in Berlin for any young West German gay was that the Wall-Wall - "an anti-fascist rampart" in the Jargonjargon of the East German Communist Party - assumed for them the advantageous function of an "anti-family rampart". Berlin's remote and fortress-like geo-political situationSituation was highly attractive to young West-German gays precisely because it deflated interference from their parents and families and so screened many of them from the social control of the petit bourgeois and provincial milieus from which they originated. To a certain extent of course every largelarge town or city has this function for gays - inin West Germany main cities such asäs Francfort and Munich, Hamburg and Cologne. But although at a greater geographical removeremove from West and South Germany, the predominant role it enjoyed cannot be explained inin terms of distance alonealone.. West Berlin held a further attraction forfor nonconformist young men which no other West German city could rival: inin thethe whole of post-war period up toto thethe accession of the GDR to thethe Federal Republic residenceresidence inin West Berlin meant automatic exemption from military serviceService and fromfrom thethe prolonged civil service intendedintended for conscientious objectors. Thus thethe decision to move to Berlin functionedfunrtioned asäs a sort of political filterfilter which leadlead toto thethe political spectrum among West Berlin students being more stronglystrongly colouredcoloured by the the leftleft -- particularly after thethe debates on the Vietnam war inin West Germany - - thanthan was the the casecase for for most West German university citiescities (with(with thethe possiblepossible exception of Francfort,Francfort, Heidelberg, Marburg and "reform""reform" universitiesuniversities suchsuch asäs Bremen, Bremen, foundedfounded inin thethe 1970's). InIn thethe 1980's West Berlin had a populationpopulation of approximatelyapproximately 1,91, 9 million inhabitantsinhabitants.. An estimated ratioratio ofof 8 toto 1010 perper centcent homosexualhomosexual or bisexualbisexual men inin thethe adult (over(aver 18)18) male population,population, takingtaking intointo accountaccount thethe particularparticular situationSituation of thethe city, wouldwould give anan approximateapproximate populationpopulation ofof 6060 toto 8080 thousandthousand gay and bisexualbisexual men.'men. 1 IndeedIndeed aa variety ofof reasonsreasons makemake itit probableprobable thatthat thethe actual figurefigure lieslies somewhatsomewhat underunder thesethese estimates.estimates. ForFor instance,instance, forfor reasonsreasons of convenience,convenience, allall foreignforeign malesmales werewere includedincluded inin thethe estimate.estimate. ButBut itit isis improbableimprobable thatthat thethe percentage ofof homo-homo- andand bisexualbisexual menmen withinwithin thethe twotwo mainmain Berlin ethnicethnic minorities,minorities, thethe TurksTurks andand thethe Kurds,Kurds, isis asäs overproportionallyoverproportionally high asäs itit isis withinwithin thethe GermanGerman malemale grouping.grouping.

2020 This reservation brings us to the role of socio-cultural differentials inin the construction of gender roles and psycho-sexual identity,identity, a question that has been much discussed inin recent yearsyears.. It must not be assumed, for instance,instance, that Turkish men in West Berlin have same sex encounters any less frequently than their German counterparts; howeverhowever,, it isis most probable that the quota of self­self- identified gay men among Turkish males isis considerably lowerlower than among the West Berlin German male groupinggrouping.. From 1967 to 1970 Berlin and Francfort were the two main centres for the West German studentStudent movement. The ensuing gay movement in the Federal Republic of the 70's for the most part had a studentStudent or at leastleast academic background, so it was not surprising that once more Berlin should become its epicentre. The Homosexuelle Aktion Westberlin (HAW) was founded in 1971, and during the 1970's provided the forum for many heated debates inin which "revolutionaries", "anarchists", "revisionists", and "reformists" attacked one another with asäs much vigour and passion asäs their counterparts inin the studentStudent movement which by now had collapsed intointo a plethora of sectarian factionsfactions.. From 1974 onwards the HAW increasinglyincreasingly fellfeil apart; inin 1977 it finally dis­dis- integrated and transformed itselfitself intointo the "Gay Centre" ("Schwulenzentrum" = SchwuZ) which is now well-known inin Western Europe. Together with the studentStudent movement the gay movement helped shape the "Zeitgeist" and has had a long-term effect on styles of lifelife,, persons and institutions. The first gay bookshop in GermanyGermany,, the "Prinz Eisenherz"Eisenherz",, opened inin 19781978,, and one ofofthe the most widely read intellectual gay periodicals inin the Federal Republic, the "Siegessaule""Siegessäule" ("Victory Column"Column":: this title alludes to one of the most fre­fre- quented cruising grounds inin Berlin's central park, the "Tiergarten"), was founded in Berlin in 19841984.. As early asäs 19841984the the project-group "Friends"Friendsofa of a Gay Museum" were able to mount a largelarge exhibition on a hundred years of lesbianlesbian and gay city life in the Berlin Historical Museum, which enjoyed considerable critical success in the German speaking world (the lesbian section was put together by a women's group of course, asäs was the lesbianlesbian part of the 1984 exhibition catalogue; see Eldorado 1984)1984).. By the end of the 70's West Berlin's flourishing commercial gay scene was unrivaled by any other inin the German speaking worldworld.. Two gay publishingPublishing houses were established inin the beginning of the 19801980's.'s. The first fully com­com- prehensive gay city guide to appear since the war was published at the beginning of the decadedecade.. Devoted exclusively to West Berlin, it listedlisted a total of 50 pubs, bars and cafescafes.. Despite itsits marginal geographical position, off the beaten track for most of West Germany and West Europe (600km east of Cologne, 800km east of Brussels)Brüssels) many gays still found itit well worth the journey.journey.

21 The Beginnings of the "AIDS-Hilfe""AIDS-Hilfe"

All this isis to say that inin 1983, when thethe firstfirst 3 casescases of AIDS were diagnosed among West Berlin gay men, thethe gay community disposed of a wide and richrieh variety of informal and formalformal networks of groups, projects and initiatives.initiatives. During 1983 and well intointo 1984 AIDS inin Germany was considered by gay men primarily asäs an American problem -- so far asäs they they considered it at all. Thus itit isis all the more remarkable thatthat inin thethe summer of 1983 a group of gay men was meeting regularly with Nurse Sabine Lange of thethe InstituteInstitute for Tropical Medicine to discuss the extremely disturbing reportsreports coming from America. '2 InIn September 1983 this group foundedfounded the Deutsche AIDS-Hilfe asäs a non-profit making organization. It isis also remarkable thatthat with a few exceptions thethe members of this group did not belongbelang to politically active groups within the gay movement and in most cases were not connected with other gay initiativesinitiatives and projects. Although influencedinfluenced inin no small measure during their professionalProfessional training or university studies by ideologicalideological spin-offs from the studentStudent and gay movement, they were nevertheless more representative of aa certain hedonistic middle class; their closestdosest equivalent inin the States would be "young urban professionals".Professionals". "Yuppie" isis widely held to be a synonym for egotistical consumerism and lack of or contempt for social responsibility. But whereas the AIDS activists of the first hour might also have been avid consumers, they were by no means devotees of the cult of narcissistic indi­indi- vidualism but showed every sign of a strong social conscience. For many of them the yearly trip to New York or California was a matter of course. InIn common with other gay men their lifelife style was the result of a longlang and often laborious process of self-emancipation and AIDS, in their eyes, posed a global threat to everything achieved up to 19821982.. Thus although the reaction to AIDS was not primarily politically motivated it was quite the reverse of "unpolitical". Indeed, the two crucial points around which early AIDS activists in Berlin organized should not go unmentionned. First of all, the blatantly dis-dis­ criminatory treatment of the first AIDS patient by the staff of a Berlin Uni­Uni- versity Clinic. And, secondly, the unwarrented use of the first AIDS patients asäs guinea pigs for medical trials. Much of the treatment they underwent had more to do with the cold curiosity of the doctors assigned to them than with effective therapeutics. Thus, shortly before his death, an AIDS patient was "prepared" to undergo a completely pointless brain operation,Operation, which was only prevented by a resolute demonstration of AIDS activists before the operating theatre doors - an ACT-UP intervention "avant la lettre". It's one of the ironies of history that the first AIDS activists were viewed with mistrust and suspicion by fellow gay political activists. In Germany and France they viewed AIDS äsas a dangerous instrument in the hands of conser-conser­ vative governments and the anti-gay media, whielded to annule the first ten-ten­ tative advances made by the gay liberation movement. Even the Gay Doctors Group - a working party of former medical students who published the widely esteemed little book "Sumpffieber - Medizin fürfur schwule Männer"Manner" in 1978 - were highly reluctant at first to associate with the AIDS-Hilfe. Nevertheless,

22 manyofthemany of the men (and women) ofthefirstof the first hourwerehour were competent in thefieldsthe fields of medicine and social therapy. lI he early activists knew that in order to meaningfully counter the threat posed by AIDS the essential prerequisite was to activate the enourmous Potentialpotential for self-help among gays.gays. Gay self-help was of vital importance, and the more so since, äsas they saw it, the bodies and institutions of Professionalprofessional medicine which produced the dominant discourse on sickness and health averover the years had heavily colluded in defining and containing homosexuality within the twin paradigms of psychiatry and pathology.pathology. Moreover,Moreover, the vicious Paragraph!Paragraph175,75, a legacy of Prussian Germany and the Nazi era,era, was a valid part of the legal code up to 11969969 when it was finally revised.revised. DpUp to then every homosexualhomosexual contact between men in Germany was illegal and punishable by law. HomosexualHomosexual contact between men averover the age of 21 was first allowed in 19691969.. Four years later, in 1973, the "age" age of consent" was lowered to 1818.. In England and the States asäs wellweil asäs in Germany the two principal academic professions, jurisprudence and medicine, were seen asäs providing the legal Justificationjustification and scientific rrhetorichetoric for state persecution and psychiatric harassment. And underlaying this, specific to Germany, was the memory of the appalling brutality of the treatment of homosexuals under fascismfascism.. Con­Con- sequently politised German gays showed much greater distrust ofofthe the state and all its activities than their counterparts in the USA or FranceFrance.. This marked scepticism pre-empted a closedose and confidential collaboration with the German General Practitioners and the established medico-scientific community, such asäs was developed in San Francisco from 1981-85 and in Paris from 1984-881984-88.. But aa further explanationexplanation for the critical distance German gays maintained to medical bodies lies in the fact that the German medical authorities are substantially more conservative in outlook than their North American counterparts (at leastleast in the two states of most importanceimportance to gaysgays,, California and New York)York)..

The Expansion ofofthe the Self-Help Groups

However, during the course of 1984, it became increasinglyincreasingly apparent to the first Deutsche AIDS-Hilfe activists that effective informationInformation and counselling work to the Berlin gay community requiredrequired the mobilization of ressourcesressources on such a largelarge scale that without financialfinancial state backing itit was completely un­un- feasiblefeasible.. InIn 1984 the Deutsche AIDSAIDS-Hilfe-Hilfe applied forfor a grant toto thethe West Berlin Parliament and the West Berlin Senat and was allocated 50,00050, 000 DM for 19851985.. This money was used to set up thethe Berlin AIDS-Hilfe, which was conceived inin 1985 asäs a special project ofofthe the Deutsche AIDS-Hilfe and for which two people were now employed toto ensure a minimum of continuity inin thethe workwork.. The Berlin project was immediatelyimmediately successful and served asäs a favourablefavourable prece­prece- dent facilitating the passage of a largerlarger grant of 300,000300, 000 DM for thethe Deutsche AIDSAIDS-Hilfe's-Hilfe's nation-wide work inin 1985. InIn 1986 itsits annual expenditure, financed by government grantsgrants,, had risenrisen toto overaver 2 million DM mainly forfor informationinformation campaigns and by thethe end of thethe year itit was employing tenten

23 people on a full-time basis. InIn 1987 the number of permanent employees rose to 20 and the budget was increased to 5 million DM. During this period the Berlin AIDS-Hilfe was also able to rapidly expand itsits budget and the number of its activitiesactivities.. In 1986 it disposed of a budget of 280,000280, 000 DM and five per­per- manent postsposts.. In 1987 the budget and personnel doubled inin size, and by 1988 the annual budget had risen to 1,21, 2 million DMDM.. One of the main reasons for the spectacular success inin building up the two AIDS-Hilfen certainly lieslies inin the adept political manoeuvering of activists and lobbyistslobbyists from the Deutsche AIDS-Hilfe who were later joined by their colleagues from the Berlin AIDS­AIDS- HilfeHilfe.. The highly proficient work of the second board of the Deutsche AIDS­AIDS- Hilfe (1985-87) under the presidency of Gerd Paul was so effective precisely because it was an amalgam of self-confident assertive lobbying,lobbying, and pragma­pragma- tism, clearly defined goals and strategies, imaginationImagination and sensitivity. But fund raising from state institutions inin Berlin and West Germany - so very efficacious in comparison to other European countries - was also facilitated by the happy chanceChance that the Portfolio for Health inin the conservative government was held by a woman whose unusually liberalliberal and innovative views were not always shared by the rest of her party but fortunately by the West Berlin Health Senator. Indeed, the founding years of the German and Berlin AIDS-Hilfen are unthinkable without the (sometimes contentious) co-operation of Senator Ulf Fink in Berlin and Minister Rita SOssmuthSüssmuth inin Bonn. They both displayed great political acumen in dealing with the material and personnal requirements of the two AIDS-Hilfen in a circumspect calculation that this would further serve their political careercareer..

Conflictual Cooperation: The Deutsche AIDS-Hilfe and Public Institutions

Even though during the SOssmuthSüssmuth era the co-operative elements inin the rela­rela- tionship between the AIDS-Hilfen and the Health Ministry by far outweighted the conflirtualconflictual ones, the AIDS-Hilfen never veered from their initialinitial principle of "the readiness to troubleshoot and resilience (of self-help organizations) when standing up for members' interestsinterests against public and private insti­insti- tutions" (Rosenbrock 1986, pp..73). Shortly after the Deutsche AIDS-Hilfe was founded a conflict arose with the leading authorities inin viral research inin Berlin. From its very inception the German medical profession viewed the HIV­HIV- antibody test asäs an important prophylactic measure, whereas the AIDS-Hilfen spoke out forcefully against blanket antibody testing and insistedinsisted that the antibody test should be used solely asäs a means of differential diagnosis, of checking blood products, or asäs an instrument inin certain epidemiological surveys (comp. Rosenbrock 1986, p.93)p. 93).. The antibody test was also declared medically invalid for symptomsymptomless less individualsindividuals on the grounds that it could not entail any specific form of treatment (comp(comp.. Rosenbrock 1986, p.115).p. 115). It was expressly stated that this position would be revised asäs soon asäs new forms of treatment became available which could either postpone or even block the outbreak of AIDS, thus prolonging the patient's lifelife (Rosenbrock 1986, pp..127).

24 Early in 19911991,, after the introductionintroduction ofofAZT, AZT, DDI and Pentamidin the Deutsche AIDS-Hilfe duely changed itsits position on the HIV-antibody test. NeverthelessNevertheless,, asäs langlong asäs no meaningful therapeutic consequences could be drawn from an antibody test it was seen asäs completely irresponsibleirresponsible to produce masses of healthy, symptomsymptomless less "patients"patients"" by inordinateinordinate and indiscriminate testing. And so when members of the Deutsche AIDS-Hilfe distributed a leafletleaflet inin 1984 warning about the undifferentiated use of the testtest,, a group of renowned Berlin Professors of Medicine publically resigned from the board of trusteestrustees,, a body that had been created inin the first place to increaseincrease the organization's prestige and standingstanding.. This was an acid test for the organization's readiness and ability to stand up for the interestsinterests of those itit claimed to represent, and itit avoided running into "a collaboration-trap", a course which would have vitiatedvitiatecf its own specific innovativeinnovative positionspositions.. And this in spite of the fact that these positions - at first - held no broad consensual basis, not even among the majority of Berlin gays who were more than eager to be HIV-antibody testedtested. . But when the initial phase of ""testtest euphoria" had faded away, it became increasingly apparent to many gays that the AIDS-Hilfen were right inin advocating a wary, critical approach to the antibody testtest.. After a period of initial irritation this "advocatory"advocatory"" role the Deutsche AIDS-Hilfe had assumed actually served to strengthen itsits general credibility - not least among those gays who for the most disparate reasons had either taken the test or were continuing to do soso..

Safer Sex: Problems in Shaping the Message

The specific development of the Safer Sex message through the channels of the German and Berlin AIDS-Hilfen from 1986 to 1987 served to consolidate the prestige and standing of the various AIDS-Hilfe groupsgroups.. Ignorance and uncertainty about possible transmission means of the HI-Virus - doubts which its identification could by no means totally dispel - promoted a great crop of catalogues with abstruse safer sex rules throughout the USA and inin San Francisco in particular. Such catalogues were not only indigestableindigestable but tended to increase rather than dispel anxiety. However, during 1985-86 it became increasingly obvious that the main sexual means of transmission of the HI­Hl- Virus was during anal and vaginal intercourse (see van Griensven etal. 1987)1987).. Acting on the recommendations of Nathan Fein, a leadingleading member of the Gay Mens' Health Crisis (GMHC) inin New YorkYork,, the Deutsche AIDS-Hilfen embarked on a radical simplification ofoftheir their prophylactic message.

Two basic rules were introducedintroduced:: •. During anal intercourse use a condomcondom. . •. During oral intercourse don't get sperm inin your partner's mouthmouth..

It was hoped that these technically - though not psychologically - simple mes­mes- sages would integrate more easily intointo the life styles and sexual mores of the

25 targetedtargeted groups, "without"without being lessless effective thanthan other practicable con-con­ cepts" (Rosenbrock(Rosenbrock 1986,1986, p.p.46).46). This never meant toto implyimply thatthat followingfollowing thesethese twotwo golden rulesrules would assure hundred per cent protection:protection: toto underscore this thethe comparative formform "Safer Sex" was deliberately adopted whilst thethe old ab-ab­ solutesolute termterm "Safe"Safe Sex" was scraped. Thus thethe German prevention message was clearly differentiated from that of thethe Netherlands, forfor instance,instance, which urged a general stop to anal intercourseintercourse and reserved thethe use of the condom for the rare "emergency" when the need forfor anal intercourseintercourse could not be resisted. West German sexologists such äsas Martin Dannecker, Volkmar Sigusch and GünterGunter Schmidt subscribed to the AIDS-Hilfen view thatthat the psychic funrtionfunction of anal intercourse was too important for the vast majority of gay men to make calls for a total ban on the practise a viable proposition.proposition. The perspective then developed by the AIDS-AIDS­ Hilfen postulated that wide-spread acceptance of Safer Sex among gay men plus long-term stability in the trend to Safer Sex could only be achieved when the indispensable recommendations for changes in sexual behaviour were kept äsas few in number and asäs sexually affirmative asäs possiblepossible.. Rolf Rosenbrock's pointed question summed up the whole debate in a nutshellnutshell:: "How to bring about the maximum reduction of transmission-means (of the HI-Virus M.B.)M. B.) through the minimum ofofchange change in sexual behaviour?" (Rosenbrock 1986, p.49)p. 49) The divergence between the Safer Sex guidelines of West Berlin and West Germany and the Netherlands stems for the most part from differing methods of risk assessment. The Dutch guidelines are based on the probability of con­con- domdorn rupture during anal intercourse, and give high priority to the irreductibleirreductible "danger margin" of regularregulär condom useuse.. This assessment strategy is empir­empir- ically based. But whilst giving due weight to unavoidable practical considerconsider-­ ations, German risk assessment was more psychologically oriented, and held the view that campaigns based on undiscountable "danger margins" inin the use of condoms and advocating the totaltotal elimination of anal intercourseintercourse would only provoke situations whose participants would simply jetisonjetison all safety precautions. Without concerted efforts toto habitualize condom use anal intercourseintercourse would occur without itit.. The 1985 Berlin pamphlet "Join In!In! The Safer Sex Action!" still followedfollowed thethe San Francisco model of a checklist grading a rangeränge of 12 sex techniquestechniques intointo categories of unsafe and possibly unsafe,unsafe, safesafe and possibly safe.safe. The firstfirst brochure toto be published by thethe German AIDS Hilfe inin compliancecompliance with thethe simplified Safer Sex guidelines - - "Prevention:"Prevention: Safer Sex" -- came out asäs latelate asäs July 19861986.. However thethe debate thatthat ragedraged around thethe moral admissibility of attempts toto influenceinfluence sexualsexual behaviour were much more protracted andand controversial thanthan inin thethe USA or FranceFrance..

2626 Safer Sex Controversies inin West German Debates

The urgent need to dispense educational material about the transmission means of the HI-Virus was acknowledged by all parties. But leftleft wing "alternative" circles, includingincluding those of the gay movement, hotly contested the ethical admissibility of public campaigns whose aim was to influenceinfluence and change the sexual behaviour of the private individual.individual. Two distinct lines of argument emerged. The first, more politically grounded, held Safer Sex campaigns to be albeit unwilling tools of the state or other private institutions for the "standardization"standardization"" of sexual behaviourbehaviour.. Any attempt by the state to establish norms inin the sexual domaine had to be unconditionally rejected on political grounds, since itit impliedimplied nothing lessless than a "nationali­"nationali- zation" of sexuality. The politically motivated critique further rejected the counter-argument that quite apart from the impossibilityimpossibility of compelling be­be- havioural changes inin sex, such campains could only offer guidelines inin a con­con- fused and precarious situationSituation on which the individualindividual could base his or her decisiondecision.. A particularly vehement diatribe was penned by GOnterGünter Amendt - a well known West German author - inin 19861986:: "The AIDS campaign can only function because its 'Safe Sex' message presents a sanitary counter-image, that trans­trans- forms victims of disease intointo guilty parties if and when they don't grovel to the rules of 'Safe Sex'. 'Safe'Safe Sex' isis a social hygiene campaign propagating a new repressive sexual orderorder.. 'Safe'Safe Sex' is an expression of North American moral imperialism, transplanting the dominant sexual ideologyideology of the white middle class into everything itit touches. 'Safe'Safe Sex' isis a prescriptive catalogue inin the fullfüll tradition of American technocratic sexology. With itsits restrictive and puritan exhortations it does not merely signalSignal the end of the epoque of 'sexual liberalization', it expresses itsits very essenceessence.. But not only that: 'Safe'Safe Sex' isis also a very welcome excuse for the propagandists of the AIDS-Hilfe groups, the left-overs of the gay movement and itsits apologists; itit spares them the trouble of confronting lifestyles and forms of relationships inin which solidarity, mutual respect and a will to end exploitation played a central rolerole...... SDI isis the collecting bowl for a collective obsession with security, 'Safe'Safe Sex' the response to a collective sexual neurosis; SDI asäs condom, 'Safe'Safe Sex' asäs a rocket shield, - the same phantasies - who can spotspät the differencedifference.. Following the seizure of power by the American industrialindustrial military complex, the sexual ideologyideology of the white middle class is now beginning to make headway against libertarianlibertarian and emancipatory trends. Safety and cleanliness are promised, and these are the twins of law and order.order."" (Amendt 1986, p.26)p. 26) Such phrases are self-explanatory and need no further comment. The second line of argument stemmed more from psychological consider­consider- ations, and contained three main critical objections.

1. Safer Sex rules comprise of a series of "Do's" and "Don'ts" and so tend to in­in- fantilise their target groups who may no longerlanger assume responsibility for their sexual lives but, inin Freudian terms,terms. must abandon itit to the authori­authori- tarian dictates of a collective Superego.

27 2. Although Safer Sex means in fact a drastic limitation to sexuality publicitypUblicity campaigns present itit äsas though it were the hattesthottest of all possible forms of sex:sex: "Disavowal of the restrictive and to a certain extent castrating nature of Safer Sex gives these campaigns their unequivocal nature.nature. Renunciation and lossloss are forcedforced intointo and maintained in the unconsdous"unconscious" (Clement 1986, p.p.232).232). 3. North American Safer Sex campaigns accentuate exhibitionistic and voyeur-voyeur­ istic sexual tendencies to the detriment of vital intersubjective elements.elements. Thus sexuality is robbed of its erotic content and degraded into a set of technical rules for the release of accumulated tension. This psychologically-orientedpsychologically-oriented criticism, brought forward by a large number of sexologists, was far more perceptive and sophisticated than the politically­politically- oriented kind which mainly stemmed from left-wingleft-wing sections of the gay move­move- ment. The sexologists mainly sought to warn AIDS-Hilfen activists of the dangers of naive suppositions and a too simplistic presentation of their in-in­ formation and educationeducation materialmaterial,, whereas, all too often, the political cri­cri- ticism aimed at the practical closure of all Safer Sex campaigns. This discussion still continues; within the Berlin AIDSAIDS-Hilfe-Hilfe it lead to the first Safer Sex brochure being distributed only after several months' delay.delay.33

Difficulties in Coping with AIDS

The number of diagnosed cases of AIDS among gay men in Berlin tripled in the firstfirstthreeyears(1982:3cases, three years (1982: 3 cases, 19831983:8cases,: 8 cases, 19841984:: 25 cases)cases).. From 1985 to 1986 the number of new cases doubled (1985(1985:: 41 cases, 1986: 101 cases)cases).. (Comp(Comp.. Table 2). Thus it became a matter of increasingincreasing urgency not only for the Berlin AIDS-Hilfe but also for many non-related projects inin the West Berlin gay communitycommunity,, to drastically raise awareness among West Berlin gays about the global threat posed by AIDS and the consequent crisis it would provoke inin the gay communitycommunity.. In June 1985 a benefit concert for the Deutsche AIDS-Hilfe was organised in the "Tempodrom", a favorite circus tent venue for many young Berliners, also due to the efforts of Rosa von Praunheim. Famous TV personalities, actors and actresses, and stars from pop and cabaret all took part in a televised program which was widely acclaimed by the Berlin and West German media, but especially by the West Berlin gaysgays.. InIn thethe autumn of 1986 appeared the first of a series of Safer Sex posters toto be printed by thethe Deutsche AIDS-Hilfe which were subsequently to be greatly admired not only inin West Germany but inin many other European countriescountries.. These posters were charac­charac- terized by a high degree of esthetic styling and throughthrough theirtheir use of good­good- looking charismatic young men they provided rolerole models for many gaysgays.. The first poster, depicting two naked male torsi,torsi, was hung not only inin most gay bars but displayed on hoardings inin thethe Berlin undergroundunderground.. InIn BerlinBerlin,, asäs inin many other cities, the public presentation of gay lifelife styles -- financedfinanced,, more­more- over,aver, wwithith public fundsfunds -- firstfirst became possible throughthrough thethe advent of AIDS. ItIt was indeedindeed feared that AIDS would threatenthreaten thethe socialsocial emancipation of gay

28 men, and reinforcereinforce once once moremore theirtheir marginalizationmarginalization and and stigmatization.stigmatization. How­How- ever, one of thethe many paradoxicalparadoxical effects effects of of thethe epidemicepidemic isis that that itit isis actually actually accelerating thethe processprocess ofof socialsocial integrationIntegration ofof gaygay menmen.. A thirdthird action inin thethe winter ofof 1986/19871986/1987 was was also also well-received by gaysgays inin West-BerlinWest-Berlin:: thethe gay magazine "Siegessaule""Siegessäule" brought out aa special issueissue on AIDS, a comprehensive and widely-distributed publication made possible byby a 20,00020, 000 DM grant fromfrom thethe Senator forfor Health. During thethe middle 80's gay pubs, bars and cafes were aa focusfocus forfor thethe campaigning work of thethe Berlin AIDS-HilfeAIDS-Hilfe.. After somesame initialinitial resentmentresentment AIDS­AIDS- Hilfe activists were soon accepted asäs welcome guestsguests.. For thethe gay clienteledientele of the Berlin AIDS-Hilfe itit was particularly reassuringreassuring toto know thatthat a telephonetelephone helpline had been set up inin 1984; fromfrom 1985 onwards itit was staffed around thethe clock. In the first three years of thisthis serviceService half of all callers were homosexual; by the end of the decade the the situationSituation had altered somewhat, and by now two two thirds of those calling for advice are heterosexual. Cooperation with thethe gay bathhouses proved much harder toto establish. The bathhouse owners were afraid that open talk about AIDS would mean a further drop inin thethe number of their customerscustomers.. The"The "AIDS-Shock" AIDS-Shock" of 1984-85 had already caused a dramatic falling off of business and was responsible for the closure of one of the three West Berlin bathhouses. Unlike San Francisco or Stockholm, however, inin West Berlin there were no calls from either heterosexual or homosexual circles for the closure of the bathhousesbathhouses.. The Health Senator of the time was swayed more by the arguments of the German and West Berlin AIDS-Hilfen - and by the pragmatic approach of his adroit advisors - which held gay bathhouses to be the most appropriate venue, among all others of the gay subculture, in which an efficient prarticalpractical dissemination of Safer Sex techniques could be conducted. In this context the elaborate, ritualised behaviour-patterns of the gay scene would provide an expedient base from which the AIDS-Hilfen could promote forms of sexual interartioninteraction that were fully adapted to the threat posed by AIDS. Closure of such venues would simply mean that sexual contartcontact would be displaced into other areas less accessible or indeed impervious to reasonable influence.influence. Consequently, there was no official move to shut down the two remaining Berlin bathhouses.bathhouses. The partythrownparty thrown to celebrate the 10th annivers-annivers­ ary of one of the bathhouses in 1987 was the spring-board for a series of regulärregular events run by the Berlin AIDS-Hilfe in conjunction with the Gay Switchboard "Mann-0-Meter"."Mann-O-Meter". Since 1988 they take place monthly and are hosted alternatively by the two bathhouses. None of thethe debates within thethe West Berlin gay community about AIDS-AIDS­ related issuesissues was äsas controversial äsas that around the closure of the backrooms inin thethe leatherleather bars. Anticipating legallegal prohibition, the bar owners had provi-provi­ sionallyshutthem;sionally shut them; inin 1989, however, three ofthemof them were reopened. Writing inin thethe major German news weekly "Der Spiegel" ("The Mirror") inin 1990 Rosa von Praunheim used theirtheir reopening äsas a starting point toto launchlaunch a much publicised and lengthylengthy attack on thethe AIDS-Hilfen and what he saw äsas theirtheir collusion inin thethe dramatic increaseincrease inin high-risk sexualsexual practices among gays.gays. He accused thethe AIDS-HilfenAIDS-Hilfen of implodingimploding under thethe sheer weight of theirtheir state-state­ financedfinanced "successes","successes", and of stultifying bureaucratic paralysis. Moreover, he continuedcontinued theirtheir permissivepermissive and slip-shod Safer Sex strategies actually promo-

29 tedted favourablefavourable conditions forfor thethe furtherfurther spread of thethe HI-Virus. The AIDS-Hil-AIDs-Hil­ fenfen responseresponse waswas sharp and personnel, labellinglabelling von Praunheim äsas hysterical and vindictive.vindictive. During the ensuing debate itit became clear that thethe prota-prota­ gonists were using one another inin factfact äsas screens on which toto project theirtheir mutual unsolved dilemmas. Rosa von Praunheim admitted in press Interviewsinterviews thatthat his personal difficulties in coming to terms with Safer Sex and his deep-deep­ rooted fearfear of infectioninfection formed the motives for his diatribe against the AIDS-AIDs­ Hilfen. For theirtheir part the AIDS-HilfenAIDs-Hilfen feitfelt so fundamentally insecure about theirtheir adopted positions that they over-reacted by breaking off contact and calling forfor a boycott of the most famous German gay film director since Fassbinder.Fassbinder. So50 at least a well-intentioned summary of the debate might run, untinted by partisan malice.malice. In Berlin at the time, however, various cynics claimed that the only intention von Praunheim had in writing the "Spiegel""spiegel" article was to stage yet another meretricious personality show, giving a further hype to his media-image.media-image. Whatever the case might be, for a short time the West Berlin gay community was radically divided. The majority of gays found von Praunheim'sPraunheim's polemic to be lacking in solidarity and largely discreditable, whilst his conduct was dismissed asäs egotistical and narcissistic in the extreme. Only a minority found that he had shown great courage in opening a debate that was longlang overdue.overdue. This temporary but complete communication break-down, occuring precise­precise- ly in a situationSituation where communication was of the utmost importanceimportance to the gay community, is clearly indicativeindicative of the traumatic impactimpact of AIDS on gay men. At the Berlin conferenceConference on "AIDS prevention and the Social Sciences" early in 19891989,, Martin Dannecker had already warned that the massive threat posed by AIDS both to the sexuality and the physical and psychological integrity of homosexual men had plunged them intointo a crisis of self-esteem of unprecedented proportions (Dannecker(Dannecker 1990a, pppp..216-217)216-217).. The bitter polemic between the AIDs-HilfenAIDS-Hilfen and Rosa von Praunheim demonstrates thatthat such traumata have consequences thatthat reachreach out far beyond thethe sphere of thethe purely sexual to have a marked influenceinfluence on thethe whole domaine of inter­inter- actionalartional patterns between gay menmen.. That AIDS had effected a radicalradical transformation of sexual behaviour became glaringly apparent asäs early asäs 1987, fromfrom the findingsfindings of thethe survey of gay men inin West Berlin and thethe Federal Republic, commissioned by the the Deutsche AIDs-Hilfe. AIDS-Hilfe. The resultsresults of thethe survey were backed up by a second one which was carried out inin 19881988.44 The resultsresults of both surveyssurveys show that that the the Deutsche AIDs­ AIDS- Hilfe and thethe Berliner AIDs-HilfeAIDS-Hilfe had succeededsucceeded inin creatingcreating a considerableconsiderable degree of sensitivity and riskrisk awarenessawareness among thethe gaysgays inin West Berlin and West Germany (comp (comp.. Bochow 1988, 1988, 1989,1989, 1993)1993).. This This risk risk awareness lead lead to to a significant decline inin thethe number ofof HIV relevantrelevant situationssituations of transmissiontransmission among gays since thethe mid-80'smid-80's.. However,However, thisthis resultresult cannotcannot bebe attributedattributed solely to to thethe prevention effortsefforts of of bothboth AIDs-Hilfen.AIDS-Hilfen. TheirTheir prevention prevention conceptconcept couldcould be successful,successful, becausebecause bothboth organizationsorganizations werewere supportedsupported byby variousvarious institutionsinstitutions andand projectsprojects whichwhich had had come come intointo beingbeing inin thethe coursecourse of of thethe 80's80's.. SomeSame ofof them,them, whichwhich had alreadyalready existedexisted before,before, hadhad shiftedshifted partsparts ofof theirtheir manpowermanpower toto thethe fieldfield ofof primaryprimary andand secondarysecondary AIDSAIDS prevention.prevention.

3030 The Contribution of Gay Networks inin Coming to Terms with AIDS

First of all it should be noted that during the 70's in West Berlin a number of gay medical practices had sprungSprung up, informallyinformally catering for a gay clientele and mainly specializedspedalized inin the treatment of sexually transmitted diseases (STDs) and Hepatitis-B. Thus, even before the advent of AIDS, a domaine of the West Berlin Public Health Service was adapted to the specific needs of gay men and, to a certain extent, had established a tradition for their health carecare.. Even inin pre-AIDS times the risk of infectioninfection from syphilis or Hepatitis-B meant that "promiscuous" gay men had every cause to keep a careful check on their state of health. These ready-made structures for gay health care furnished the basis for a prompter response to AIDS - an aspect that has been largelylargely neglected inin previous discussions of the subject, although itit isis by no means particular to West Berlin and may be equally noted inin other gay metropoles with an open liberal climate such asäs Amsterdam, Paris or San Francisco. InIn 1987 the medical practices specializing inin AIDSAID5 officially regrouped asäs "The Working Party on AIDS", two thirds of whose members were gay doctors. But before AIDS be­be- came a public issue inin Berlin, a further bond of co-operation had been forged between the Public Health Service and the gay community that was to prove invaluable in dealing with the epidemic. InIn 1982 the InstituteInstitute for Tropical Medicine launched a campaign for immunizationimmunization against Hepatitis-B inin con­con- junction with gay doctors and gay groups and the Green Cross, a branch of the World Health Organization. This campaign had a very positive feed-back from the gay community and was viewed by many gay men asäs exemplary inin that aa Public Health Authority had taken activeartive stepsSteps to support the health of the gay section of the population withoug patronizing, moralizing or seeking inin any way to control them. When the AIDS epidemic reached Berlin, the InstituteInstitute for Tropical Medicine immediately became a central clearingclearinghouse house for informa­informa- tion and counselling. And when the HIV-antibody test was introduced,introduced, the gay men who came forward to take itit showed confidence inin the Institute's assurances of anonymity and impartialityimpartiality. .s5 That such bonds of trust could be forged in the first place is due inin largelarge part to the unstinted efforts of one co­co- worker at the Institute, Nurse Sabine Lange, who was particularly successful in building up a sound working relationship with the leather scene, which inin Berlin, asäs elsewhere, was particularly hard-hit by the epidemic. InIn 1986 she received one of the two posts assigned to Berlin from the federal govern­govern- ment's pilot project "Streetwork". With guaranteed state backing for the next five years, it provided another major strandStrand inin the Berlin network of AIDS prevention work. In order to adequately document the sheer diversity of initiativesinitiatives that sprungSprung from the gay community and the extent of social support such initiatives received, two further projects should be mentioned, both of which have played an important role inin AIDS prevention work, although neither was founded asäs a result of the syndrome. The Gay Switchboard "Mann-O-Meter""Mann-0-Meter" founded inin 1985, has received substantial backing from state funds since 1987 (in 1988 it was allocated 200,000200, 000 DM). Originally planned asäs a communication, informationInformation and coun-

31 selling center forfor gaygay men, averover thethe past fewfew years itit has widely extended itsits scope toto taketake on an increasingincreasing role inin AIDS prevention work. Its contribution isis twofoldtwofold and consists of disseminating informationinformation on counselling and welfare options forfor AIDS specific problems in West Berlin, plus thethe organization of safer sex workshops. In thethe heady days followingfollowing the collapse of the Berlin Wall on thethe 9th November 1989, its rooms were packed with gays from East Berlin; wanting general Informationinformation on West Berlin, but also showing a keen interestinterest inin Informationinformation material on AIDS.AIDS . The work of thethe "Schwulenberatungsstelle" (Gay Counselling Agency) is less well-known thanthan thatthat of the Gay Switchboard, but over the past years it too has expanded its counselling and therapy options to encompass psychosocial Problemsproblems arising fromfrom AIDS.AIDS. From the agency staff of 13 persons, 3,3,55 full-time employees are involved in continuous psychotherapeutic support for HIV-HIV­ Positive or people with AIDS. The above account, dealing äsas it does mainly with areas of primary preven-preven­ tion for gay men, is by no means exhaustive;exhaustive; however it does attempt to indi-indi­ cate the main actions and projectsprojerts in West Berlin between 1983 and 1989. The author hopes that he has managed to convey at least somesame impression of the sheer diversity of responses to AIDS in West Berlin. HoweverHowever,, any account of the Situationsituation in West Berlin would be incomplete without more than a passing reference to the situationSituation in East Berlin. Not only because the Berlin Wall fellfeil in November 1989, and ever since 1990 the two halves of the "divided city" have strived to re-unite.re-unite. Even before 1989 the Berlin Wall was by no means insurmountableinsurmountable,, but rather constconstituted,ituted, inin the catch-phrase of Meinrad Koch, Head of the German AIDS-Center, "a semi-permeable membrane" - pervious, that is, from one side only.only.

AIDS inin East Berlin

In the latterlatter part of the 80's West Berliners paid about twotwo million visits a year to the east part of thethe citycity.. Most of thesethese visitors crossed overaver to visit relativesrelatives inin thethe EastEast,, but itit may be safely assumed thatthat gay men made up an over­over- proportionally largelarge part of thosethose visiting thethe east forfor other thanthan familyfamily reasonsreasons.. This hypothesis isis basedbased on thethe recognizedrecognized greater mobility of gay men, especially thosethose adapted toto lifelife inin big citiescities.. Moreover, inin 19871987 thethe decrees regulatingregulating overnight staysstays forfor West Berliners were relaxedrelaxed somewhat:somewhat: previously West Berliners with a dayday visa had to to leaveleave thethe EastEast byby midnightmidnight at at thethe latestlatest;; nownow,, under certain conditionsconditions theythey could stay overnight. ViewedViewed fromfrom thisthis context itit isis surprisingsurprising howhow widelywidely disparatedisparate thethe epidemiologicalepidemiological situationssituations are inin thethe twotwo citiescities.. TablesTables 1-21-2 summarisesummarise thethe differentdifferent incidenceincidence ofof HIV and AIDS inin West and EastEast Berlin.Berlin. Given the the permeabipermeabilitylity of of the the Wall Wall the the vast vast divide divide between between EastEast and and West West is is by no means self-explanatoryself-explanatory.. ItIt needsneeds to to bebe askedasked whywhy the the HIVHIV incidence incidence inin EastEast Berlin Berlin isis notnot muchmuch higherhigher than than itit actuallyactually isis.. AA possiblepossible answeranswer mightmight bebe thatthat gaygay tourism tourism inin EastEast BerlinBerlin waswas moremore ofof thethe sightseeingsightseeing kind,kind, conduciveconducive toto

3232 social rather than sexual contact (which by no means impliesimplies that sexual contact is anti-social). Although East Berlin could offer flourishing cruising areas and restrooms, it was an ill-advisedill-advised Western visitor who sought his "quick sex" therethere.. Quite simply, until the AIDS-Shock made itselfitself feltfeit inin 1983-1983 - 1984 and lead to a distinct drop inin the number of sexual contacts, itit was much easier to find a partner for casual sex inin one of the West Berlin darkrooms, bathhouses or parks. Two further factors should also be notednoted::

1. For every trip to East Berlin itit was obligatory at the border to make aa disadvantageous change of 25 DM for 25 East MarksMarks.. West Germans and foreign visitors had to pay an additional chargeCharge of 5 DM for an entry visavisa.. Thus the "entrance fee" for East Berlin was considerably higher than that for a West Berlin bathhousebathhouse.. 22.. Account must also be taken of the influenceinfluence of sexual networks asäs Michael Pollak has described them inin his analysis of the situationSituation inin France (Pollak 1988, pp.pp.5S-68).58-68). Such sexual networks were of course also existant in East Berlin and the GDR. Since a commercial gay scene existed only inin East Berlin - and there only in the most rudimentary form - the circle of gay friends and acquaintances became of incomparablyincomparably more importance than inin West Berlin or West Germany. But West Berlin gays day-tripping to the East had no easy or direct success to such private circles. On the contrary: West Berliners and West Germans - and not just the gays among them - were often accused of being patronizing and arrogant. Aggressive behaviour, flashy clothes and other forms of conspicuous consumption were viewed with great distaste by many GDR citizenscitizens.. The cultural clash between West and East and the low-keylow-key but permanent cultural imperialismimperialism shown by many Westerners confirmed many East Germans inin their guarded aloofness and thus forestalled a more thorough "mixing" of Western gays with those in East Berlin. The low prevalence of HIV and AIDS inin East Berlin cannot be solely explained inin terms of the isolationistisolationist politics of the East German government - though doubtless such policies has considerable repercussions - but must be viewed inin connection with certain sociocultural factors, themselves the product of the state's drive to self-isolationself-isolation.. Moreover, the economic situationSituation of the GDR and the lacklack of a free monetary systemSystem prevented the development of a drug trafficking scene such asäs isis typical for West Berlin, West Germany and other West European countries.

The GDR's state planned economy with all itsits concomittant restrictions on the Public Amenities and Private Services Sector ensured that a commercial gay scene in the western sense could hardly take root. UpDp to 1989 there were two cafes in East Berlin and two bars mainly frequented by gay men; however, the city had no bathhouse nor was there a bar with a darkroomdarkroom.. Due to the very lack of suitable facilities for a high turn-over inin sexual partners, the quota of "promiscuous" gay men inin the East was considerably lowerlower than inin West Berlin. Thus the low prevalence of HIV and AIDS inin the GDR is much lessless the result of particularly successful campaigns for primary prevention, asäs the GDR government claimed (comp. Grau and Herrn 1989), and more a direct consequence of the specific economic structuring of GDR society.

33 Such remarks should not, however, create the misleading impressionimpression that inin the period 1984-89 the number of sexual contacts between West Berliners, West Germans and East Berliners was virtually negligeablenegligeable.. On the contrary: there must have been a greater number of them - though evidently not enough to reach the "critical level"level" that would have made for higher HIV in­in- cidence level in East Berlin up to 1989. Since there isis no informationinformation available on the frequency of sexual contacts between West and East further specula­specula- tion onan the matter is otiose. However, it may be assumed that from 1984-85 onwards a substantial number of gay sexual contacts between West and East were no longerlanger at risk (in relation to the transmission of the HI-Virus)HI-Virus).. At this point in time there had asäs yet been no official pronouncement from the GDR Health Ministry. But the theme AIDS had already received extensive coverage on West German television and West Berlin radio, both of which had longlang been considered by East Germans asäs reliable sources for ""withheldwithheld informa­informa- tion", both of which enjoyed far greater credibility than their East German equivalentsequivalents.. And even if Western TV and radio coverage of AIDS between 1984-85 was by no means optimal, at leastleast it was more differentiated and lessless luridly sensationalist than the coverage by the West German tabloid presspress.. Once again, it may be safely assumed that the Western TV and radio coverage of AIDS was followed attentively by many East Berlin and GDR gays and that such coverage brought about corresponding changes inin their sexual behav­behav- iour.

The AIDS-Hilfe GDR and itsits predecessor

The AIDS policy measures of the GDR government were based on the rigid traditionalist approach for the control of infectiousinfectious and contagious disease and comprised of interventions for the "exposure of the infectiousinfectious source" together with mandatory registration of the infectedinfected and sick and a relent­relent- lessly persued program of contact tracing. The HIV-antibody test was con­con- sidered an integral part of the prevention agenda, and homosexuals inin general were called on to take it.it. Despite the fact that the majority of HIV infections and AIDS cases were to be found among gay men, the informationinformation campaigns of the GDR Health Ministry were kept determinedly non-specific, taking no account of addressing homogeneous target groups. InIn conception GDR policy measures may best be compared to those of Bavaria or Sweden; they are worlds apart from the liberalliberal strategies adapted by the West Berlin Parliament, not to mention the open-minded approaches of Switzerland or the Netherlands in the 1980's. Such restrictive measures soon aroused strong criticism from East Berlin gays; nevertheless under the old autocratic regime itit could be articulated only with the utmost prudence. Early in the 80's "autonomous" gay groups had formed under the auspices of the Protestant Church - which did not necessarily make them "ecclesiastical". Under the draconian surveillance of the ancien regime those gays wishing to formulate a a gay response to the threats posed by AIDS also had littlelittle alternative but to

34 organize under thethe Churche's patronage. In December 1987 the "Zentrale AIDS-Arbeitsgruppe der Kirchlichen Arbeitskreise in der DDR" was formed ("Central Working Party on AIDS of the Church General Working Committee in the GDR"). The chief concerns of this gay group were to formulate a critique of the rigid and narrow agenda of the GDR Health Ministry and to establish aa non-discriminatory Informationinformation and counselling Serviceservice for gays, that took füllfull account of their sexual diversity.diversity. During 1988-89 numerous weekend Seminarsseminars were organized for information, discussion and training in an attempt to launch an alternative counselling Serviceservice for gays. Early in 1989 an anonymous and confidential telephone counselling service was offered once a week in East Berlin's main Protestantprotestant church the Berliner Dom; however, this found little resonance.resonance. Unlike the West Berlin AIDS-Hilfe the East Berlin group recommended condom usage during both anal - genital and oro - genital sex. Photostate material and handbills were distributed from 1988 onwards in an attempt to directly address specific groups. But the first "official" pamphlet of the "Central Working Party on AIDS" was brought out in the weeks following the collapse of the Berlin WallWall:: a "memorandum" containing a critical assess­assess- ment of the outgoing AIDS agenda of the GDR government, published in December 1989. A month later, in January 1990, the "AIDS-Hilfe GDR" was founded; in July 1990 the newly - elected GDR government granted them premises in East Berlin; in September of the same year government allocation paid for a staff of five employeesemployees. . Concurrent with the first free elections for the "Volkskammer" (the GDR Parliament) in March 1990 the anonymous HIV-antibody test was officially sanctioned and the decrees for mandatory registration after a positive HIV­HIV- antibody test were abolished, together wich compulsory testing inin GDR prisonsprisons.. However, there remained insufficientinsufficient time both for the new GDR government and the numerous self-help groups even to laylay the foundations of a newnewAIDS AIDS program forforthe the GDR. In September 19901990the the "L.3nder""Länder" ofoftheGDR the GDR reconstituted themselves anew, reverting to the status quo they held from 1947 - 1952 in the Soviet occupied zone until they were abolished by the East German communist government. Having thus granted itselfitself a federal status, on the 3rdBrd October 1990, the GDR formally acceded to the German Federal Republic. In January 1991 the AIDS-Hilfe GDR merged with the Deutsche AIDS­AIDS- Hilfe, which thus also became thethe umbrella organization forfor 16 local AIDS­AIDS- Hilfe groups that by then had formed inin East GermanyGermany.. Since the AIDS-Hilfe GDR has assumed the rolerole of a locallocal group for East Berlin itsits premises shall be kept until June 1991 asäs the the "Eastern secretariat" ofofthe the Deutsche AIDS-Hilfe.

Current Problems inin East Berlin and East Germany

The Federal Government's serious miscalculation of thethe cost of German reunification has reduced public financesfinances toto a statestate of disaster. This has direct and drastic consequences forfor Berlin, now a "unity" oftwoof two very unequal halves. At thethe beginning of 1991 West Berlin, which has always been extremely

35 dependant on large subsidies - now being reduced - reunited with an East Berlin which has lost itsits function asäs capital city and whose unemployment figures rose to more than 200,000200, 000 inin 1992 - a staggering 40 - 50 per cent of the total work-forcework-force.. Berlin's financial situationSituation isis,, mildly put, catastrophic, and the Federal government shows littlelittle intentionintention asäs yet of prioritizing aidaid.. The Berlin Parliament is trying to survive the crisis by means of a rigorous austerity program and extensive borrowing which will involveinvolve drastic middle-term retrenchment for the whole domaine of AIDS self-help groupsgroups.. Cut-backs inin finance mean that many planned measures for the welfare and psychosocial counselling for people with AIDS, for the supervision of volonteer workers and the provisionProvision of adequate housing for those with HIV or AIDS would no longerlanger be viable. But in the light of the lowlow HIV and AIDS incidenceincidence inin East Berlin and the high HIV and AIDS incidenceincidence inin the other part of the city, longlong-term-term programs for primary prevention inin East Berlin that are not merely pressed from Western models, are of crucial importanceimportance.. The sociocultural divide that segregates the two halves of the city isis too markedly pronounced to be bridged easily in the coming years. IfIf,, overaver the past few years, government funding for AIDS self-help groups inin West Germany and West Berlin was remarkably high inin comparison to that of Paris or London, it now appears that the financial repercussions of German unity shall downgrade the positive West German situationSituation to the impairedimpaired level of France or EnglandEngland.. At the very time when great exertions are required of self-help groups in secondary and tertiary prevention work inin West Berlin -- and primary prevention inin both West and East Berlin - government backing isis rashly withdrawn. The grim situationSituation inin the former GDR will be further exacerbated by the implosion of major areas of the Public Health Service, casualities of the East's brutal assimilation to western systemsSystems and structuresstructures.. The East German systemSystem of out-patient care - the Polikliniks - has mostly been destroyed. Moreover, it isis highly probable that inin East Berlin the greater part of welfare facilities catering for alcoholics are to be shut down, although in view of the current social crisis inin East Germany there should be massive reinforcement of alcohol-abuse programs and deintoxification units. At pre­pre- sent the population of the former GDR isis experiencing the collapse of itsits institutions and the breakdown of all normative orientation to a degree unparalleled since the end of World War 11II.. Aggravating this highly charged situationSituation of unforetold psychic stress isis a deep and general ecological catas­catas- trophy from which only the northern part of the territory is largelylargely spared. The demotion of East Berlin from itsits status asäs capital and the consequent lossloss of many privileged positions for East Berliners isis a further turn of the screw. In short, the pre-conditions for the physical and psychic well-being of the majority of GDR citizens are incontrovertablyincontrovertably bad. The massive loss of self­self- confidence and self-esteem the crisis entails for many East Berliners and other citizens of the former GDR threatens to conglomerate intointo a "collective"collertive trauma"trauma". . Using the spurious argument that at present the prevalence of HIV infections and AIDS cases inin the old federative states of the FGR has not yet reached the level predicted inin 1986/87, and under the stamp of the fiscal pressure of German reunification, federal funding for AIDS related prevention

36 work and socialsocial researchresearch intointo AIDS isis toto be drastically cut back. Euphemistically put, thisthis holds out no rosy futurefuture forfor thethe fivefive new East German states and East Berlin. TabletTable 1 demonstrates that thethe number of newly diagnosed cases of HIV infectioninfection inin East Berlin doubled fromfrom 1989 toto 1990.1990. In comparison to West Berlin and West German metropolitan areas, the absolute figure for new cases isis still extremely low.low. However, from 1991 to 1995 there is likely to be a much more dramatic expansion of HIV on the territory of the former GDR than in the previous fivefive years. The level of HIV incidence and prevalence in the five new federalfederal states and East Berlin, in terms of a general West European compar-compar­ ison,ison, isis one of thethe very lowest; but whether it may be maintained at the present low levellevel remains highly uncertain.uncertain. Research findings from studies on changes in gay sexual behaviour under the impact of AIDS (in West Germany, France and North America) all concur in pointing out that there is only aa putative - or at the very most negligible - correlation between behavioural change and the level of perceived informations. Significant changes in sexual behaviour are brought about more by personal experience of AIDS in friendship or acquaintanceship networks, by a positive self-accepting attitude to one's own homosexuality, by supportative recognition of homosexuality by the immediate social environment, and by firm integration in gay networks. Whilst Integrationintegration in gay networks is privileged in East Berlin inin comparison to other cities in the former GDR (with the exception of Leipzig and possibly Potsdam), due to the epidemiological situationSituation inin East Berlin personal aware­aware- ness of AIDS is still very limited.limited. A concept for the primary prevention inin the new UinderLänder which takes their specific situationSituation intointo account has not been presented by the Deutsche AIDS-Hilfe or the locallocal AIDS-Hilfen inin East Germany until nownow.. It remains an urgent desideratum and should be developed and discussed by the Deutsche AIDS-Hilfe. From July 1989 onwards the legallegal basis for the social acceptance of homosexuality inin the GDR was more favourablefavourable thanthan inin thethe Federal Republic. Discriminatory treatment of gays before thethe lawlaw was abolished by the ab­ab- rogation of the relevant paragraphs fromfrom the Penal Code, and thethe "age of consent" was fixed at 1616 forfor homosexual and heterosexual persons alikealike.. Nevertheless, if inin an open society such such asäs the the NetherlandsNetherlandsthe the lawslaws governing thethe "age of consent" are a reflectionreflection of thethe whole society's liberalliberal views, thisthis cannot be the case forfor an autocratic bureaucraticallybureaucratically structured societysociety suchsuch asäs thethe GDRGDR.. The abolition of Paragraph 151151 fromfrom thethe Penal Code should be seenseen more asäs a gift graciously bestowed on gays by thethe rulingruling communistcommunist party (the(the SED), asäs a concessionconcession toto civilcivil rightsrights activists and progressiveprogressive SED party mem­mem- bers.bers. Indeed,Indeed, itit may well have beenbeen primarilyprimarily conceivedconceived asäs part of a "strategy"strategy of subjectionsubjection"" thatthat cancan proceedproceed moremore efficientlyefficiently withwith socialsocial repressionrepression behindbehind a camouflagecamouflage of liberalliberal windowwindow dressing. WithinWithin thethe scopescope ofof thethe mergermerger program forfor thethe legallegal systemsSystems ofof thethe twotwo GermanGerman states,states, itit isis nownow finallyfinally intendedintended toto abolish ParagraphParagraph 175175 fromfrom thethe WestWest GermanGerman PenalPenal Code,Code, andand toto lowerlowerthe the "age"age ofofconsent" consent" toto 16,16, independentindependent ofofthe the sexualsexual orientationorientation ofofthe the partiesparties involved involved.. That such such an an initiative initiative is is now now being being legally legally contemplated contemplated maymay hardly be ascribedascribed toto thethe conservativeconservative government'sgovernment's betterbetter judgementjudgement -- otherwiseotherwise they they would havehave immediatelyimmediately advocated advocated lowering lowering the" the "age age of of con-con-

3737 DiagnosedDiagnosed casescases ofof HIV HIV-1-lnfection-1-lnfection inin WestWest andand EastEast Berlin,Berlin, classifiedclassified accordingaccording toto the the yearyear inin whichwhich thethe blood blood samplesample reachedreached thethe laboratory laboratory andand classifiedclassified byby sex* sex* ^ (D

WestWest BerlinBerlin EastEast BerlinBerlin

Year/ Sex Year / Sex UnknownUnknown MaleMale FemaleFemale TotalTotal UnknownUnknown MaleMale FemaleFemale TotalTotal

beforebefore 1985 78 1985 78 366 3838 482 0 0 0 00 1985 1985 285 10931093 198 1576 0 0 0 0 1986 152 1986 152 1132 174 1458 0 3 0 3 1987 1987 105 1036 191 1332 0 19 0 19 w 19 00 1988 88 797 1988 88 797 182 1067 0 12 0 12 1989 1989 74 533 110 717 0 11 1 12 1990 92 710 1990 92 710 143 945 2 28 0 30 1991 102 586 1991 102 586 153 841 0 37 3 40 1992** 65 1992** 65 417417 88 570 2 28 6 36

Total 1041 6670 Total 1041 6670 1277 89888988 4 138138 10 152

*ln*In the the Federal Federal RepublicRepublic thethe sexualsexual orientationorientation ofof more more thanthan halfhalf ofof thethe peoplepeople withwith HIV-1HIV-1 InfertionInfection isis unknown.unknown. ThusThus datadata cancan onlyonly be classifiedclassified accordingaccording toto sex.sex. **** DataData notnot completecomplete yet.yet. RegisteredRegistered cases ofof AIDS inin West and East Berlin.Berlin. Classified Classified accordingaccording toto sex 5: Il N

West Berlin East BerlinBerlin

YearYear/Sex / Sex Gay Male Female Total Gay Male Female Total

before 1984 12 13 0 13 0 0 0 0 1984 27 0 1984 27 31 0 31 0 0 0 0 1985 40 45 2 47 0 0 0 0

1986 108 115 5 120 0 0 0 0 W 1.0 1987 192 222 10 232 2 3 0 3

1988 252 294 17 311 2 2 0 2

1989 276 330 14 344 5 6 0 6

1990 248 304 21 325 6 7 0 7

1991 198 252 24 276 4 5 0 5

1992* 177 212 30 242 7 9 1 10

Total 1530 1818 123 1941 26 32 1 33

* Data not complete yet.yet. sent" toto 14.14. ItIt isis largelylargely due due to to thethe forceforce majeuremajeure generatedgenerated byby the the conflationconflation of twotwo incommensurableincommensurable judical judical systemsSystems.. The The reintroduction reintroduction ofof thethe prejudicialprejudicial paragraphParagraph would only serveserve toto aggravateaggravate thethe alreadyalready considerableconsiderable socialsocial unrest inin thethe formerformer GDRGDR.6.6

The Present Concept of thethe Deutsche AIDS-Hilfe

Thus there still remains a great deal toto be done before gay lifestyleslifestyles can be fullyfully accepted inin both parts of Germany, and both halves of BerlinBerlin.. This sobering appraisal underpins the concept of "structural"structural prevention" adopted by thethe Deutsche AIDS-Hilfe inin 1990. Health care policy planning isis seen asäs an integralintegral part of comprehensive social interventionsinterventions asäs defined by the Ottawa Charta of the WHO: "Our special contribution ...... asäs infectedinferted gay people ...... isis toto seek toto influence our communities and lifestyleslifestyles with a view to health promotionpromotion.. This involves not only comfort and integrationintegration inin a supportative social environment, free and ready access to essential informationinformation sources, and the empowerment of practical abilities, but also endorses individualindividual decision making ... inin relation to individual health concerns. People may only develop their fullfüll health potential when allowed to participate inin policy making decisions affecting their healthhealth."." (Vorstand der Deutschen AIDS-Hilfe 1991, p.6)p. 6).. The health-care principles of the WHO Charta can only be effectively applied when social structures that stand in oppositionOpposition to them are reformed or abolished. Widespread poverty, social and cultural deprivation, social stig­stig- matization and discrimination, a deficient Public Health Service and a govern­govern- ment economic program dominated by an ethic of possessive individualism, are all forces that militate against the implementation of the WHO Health Charta.Charta. The "structural prevention" concept of the German AIDS Hilfe takes into account the preconditions for primary, secondary and tertiary social prevention programs in an attempt to realize them within society.society. Under-Under­ pinned by consciousness raising and self-empowerment strategies, "identity development" activities with marginalized individuals also form an integral part oftheof the program, together with collective "identity options" (the plural isis important).important). Such programs are of particular relevance to young gays, who still go throughthrough theirtheir coming out and going public in a "normative vacuum" (Dannecker and Reiche 1974, p.p.146), since all the educational processes in all socialisation agencies inin our society are monolithically and rigidly orientated towardstowards (compulsory) heterosexuality.7heterosexuality.1 Based on strategies that seek toto de-stigmatize population constituencies particularly hard hit by HIV and AIDS, thethe Deutsche AIDS-Hilfe's program isis broadly comparable toto thatthat of many self-help groups inin West Europe and North America.America. However, thethe difference lieslies inin thethe specialspecial" "anti-integrationist" anti-integrationist" variantvariant thethe Deutsche AIDS-HilfeAIDS-Hilfe has produced, one thatthat vigourously proclaims gays' andand drug injectinginjecting users' right toto difference.difference. TheThe outstandingoutstanding featurefeature of thethe campaign must lielie inin itsits emphasis on "dealing"dealing withwith thethe prophylacticprophylactic dilemma at thethe levellevel of primary prevention

4040 activities" (Vorstand der Deutschen AIDS-Hilfe 1991, p.6).p. 6). This somewhat cryptic formula seeks to encapsulate the sense of erotic loss and deprivation induced by the sustained application of safer sex (comp. Bochow 1990b, p.39).p. 39). The concept "prophylactic dilemma" seeks to elucidate the contradictory Janus-like nature contraception assumes when safer sex isis practised during anal intercourse. On the one hand - when properly used - the condom pre­pre- vents a potential transmission of the HIV virus. But for many gays, for whom unprotected anal intercourse isis of prime psychic importance, the condom also effectively blocks the indispensableindispensable feeling of dissolution and blending with the partner, thus placing severe restrictions on the interactiveinteractive "dyadic" dimension of sexuality. Even when "in fact" the condom isis "only" a transpa­transpa- rent shield of 0,0050, 005mm mm thickness, projected on the symbolic levellevel it can assume the overwhelming proportions of a meter-thick prison wall. Never­Never- theless important asäs such reservations are, itit should be stressed that they are the inevitable side-effects accompanyng sustained condom usage, and involveinvolve neither a rejection of the condom nor of anal intercourseintercourse asäs suchsuch.. Martin Dannecker has analysed the main motive that leadsleads to the rejection of the condom and of anal intercourseintercourse asäs follows: "Resistance to condom usage, including condom usage during anal intercourseintercourse does not only spring from aa limitation of sexual desire or from the inabilityinability of most gay men to find a piece of rubber erotically attractive. The condom (also) poses restrictions on sexual gratification because it isis inextricably associated with AIDS. For gay men the condom has but one meaning: itit blocks HIV infection.infection. They will hardly use itit for any other reason than to stop falling sick of AIDS somesame day. And so use of the condom inevitably and immediatelyimmediately calls to mind the very scenario fraught with sickness and death that itsits use isis designed to avoid. It isis most likelylikely that aa great number of gay men have extricated themselves from this dilemma by limiting their sexual practices to those which - while still taking account of safer sex - eliminate the condom and thus eradicate the central symbolSymbol of the presence ofofAIDS. AIDS."" (Dannecker 1990, pp..1107)07) Given these strong background reservations, perhaps the scepticism ex­ex- pressed by those in and around the Deutsche AIDS-Hilfe about the current "relapse" debate in the USA isis more readily understandableunderstandable.. In the current debate, the term "relapse", derived from Public Health Literature, and used inin a perfectly analogous way, is taken to mean the "retrogression" from adopted safer sex to unsafe sexual practices. Thus the resumption of sexual practices that could lead to a potential HIV virus transmission isis equated with infringement of the abstinence precept for clean alcoholics or drug injectinginjecting users, with weight-watchers disregard for their calorie count or cholesterin diet, or with the acceptance of frequent stress situations by those with cardiac disorders. However, it is a highly questionnable procedure to set safer sex recommen­recommen- dations for gay men on a par with abuse therapy for alcoholics, dietary plans for the over-weight or stress reduction measures for the weak of heart, and to discuss them within the same health care context. Both from their social con­con- text and from the resultant psychic dynamics the violation of the abstinence precept by an alcoholic and the disregard for safer sex guidelines by a gay man are widely incommensurable actsacts.. For a clean alcoholic, infringementinfringement of the

41 abstinenceabstinence preceptprecept involvesinvolves thethe reactivationreactivation ofof psychicpsychic problemsproblems thatthat hehe oror sheshe thoughtthought theythey hadhad overcome.overcome . ForFor aa gaygay men unprotectedunprotected sexsex may representrepresent surmountingsurmounting thethe barrierbarrier ofof condom-linkedcondom-linked analanal intercourse.intercourse . WhilstWhilst thisthis isis most healthyhealthy fromfrom aa psychologicalpsychological point ofof view,view, toto treattreat thethe occurrenceoccurrence äsas aa "relapse""relapse" isis toto pathologizepathologize thethe spontaneous freedomfreedom ofof aa sexualsexual artact within thethe structuresstructures ofof aa psychicpsychic problem. InitiatorsInitiators ofof andand activistsactivists inin prevention campaigns forfor gaygay men should be fullyfully awareaware thatthat althoughalthough thethe guidelines "Fuck"Fuck withwith a rubber"rubber" isis an easily formulated,formulated, eveneven catchycatchy Slogan slogan and thethe central tenettenet of thethe safer sex campaign, itit cancan inin no wayway obviate thethe immenseimmense difficulties involvedinvolved inin itsits practical application. The impossibilityimpossibility of making thethe condom erotically desirable - a a goal thatthat isis frequentlyfrequently triedtried forfor inin thethe campaigns of gay self-help groups -- isis strikingly illustratedillustrated by thethe findingsfindings of studies by Martin Dannecker and Peter Davies etal. (comp. Dannecker 1990, p.p.105;105; Davies etal. 1990, p.p.151).151). Such studies unanimously findfind that condom use encounters a core of psychic resistance thatthat can be overcome neither by the conditioning programs of cognitive psychology nor by behaviourist therapy.therapy. Even the most ingenious safer sex campaigns will never achieve a hundred per cent compliance with the guideline "Use a condom during anal intercourse".intercourse". Changes in sexual be-be­ haviour - fortunately! - cannot be achieved with the advertising strategies for soap powder. What are needed are counselling options and scene-oriented artivitiesactivities that seek to find individual solutions to the individual problems gay men encounter when tackling the "prophylactic dilemma"8. Individually designed risk strategies, not the dictates of "consenting compulsion" sculpt the perspectives of an AIDS agenda that isis firmly grounded in the principle of individual responsibility. The Deutsche AIDS-Hilfe's concept of structural prevention is an attempt to mediate these strategiesstrategies.. An explanation of sexual behaviour is to be found inin the dynamics of sexual interactioninteraction and of sexual fantasies but not inin the social or scientific construction of maladjusted problem individualsindividuals (comp(comp.. Dowsett et aI.,ai., 1992, p. 7, and Davies et aI.,ai, 1992, pp.. 140)140)..

4242 Notes

1 West Berlin'sBerlin's StatistStatisticalical Year-BookYear-Book forfor 19901990 (p.58(p. 58 onwards)onwards) specifiesspeofies anan adultadult malemale populationpopulation ofof783, 783,905905for for 1987.1987. 8 8 perper cent cent of of this this total total givesgives67, 67,712712 homo- homo-andand bisexual bisexual men; men; 1010percent per cent brings the the number to to 78,391.78, 391 .Since Since thesethese quotes quotes are are based based on estimatesestimates they they can can only indicate indicate approximate dimensions and are are not not toto bebe read read as äs "exact" "exact" figures. figures. 2 InIn 1983 thethe InstituteInstitute was stillstill thethe departmentdepartment of tropicaltropical medicine of thethe "Landesimpfanstalt"."Landesimpfanstalt". 3 For a recentrecent summary of debatesdebates inin thethe AIDSAIDS-Hilfen-Hilfen see See the the accountaccount byby Hans Hengelein andand Christine HopfnerHöpfner (1990).(1990). 4 An English summary of thethe resultsresults of bothboth surveys may be be found found in in Bochow 1990. 1990. 5 The InstituteInstitute for TraoicalTropical MedMedicineicine also also participatespartidpates inin the "Multi-centered"Multi-centered prospective cohortcohort studies on AIDS" inin thethe FederalFederal Republic, inin cooperationcooperation with centers inin Francfort.Francfort, Hamburg, Hanover,Manöver, Cologne and Munich. Comp. Koch and SchwartlanderSchwartländer 1990. 1990. 6 The expression "merger"mergerofthetwojudicial of the two judicial systems"Systems" isis of ofcourse course an euphemismeuphemism-asthejudidal - as the judicial systemSystem of the former GDR isis practically abrogated toto makemate way forfor West German law.law, However, inin spite of great coertion, a fewfew points of highly symbolic order resist resist this this rapid rapid forced forced transformation. Neit~erNeither Paragraph 175 nor Paragraph 218 of the Federal Penal Code, which allows abortion inin the first three months only under certain restrictiverestrictive circumstances, could be forced on the population of the former GDR. 7 Even the majority of liberalliberal teachers and parents still consider -- and only tolerate - a young person's homosexual orientation asäs "the unfortunate exception", never viewing itit asäs one possible variationVariation of human sexuality to be accepted - or even anticipated - by the education system.System. S8 To the best of my knowledge the Norwegian research by Annick Prieur isis alone inin the fields of Anglo-American and Scandinavian publications in in presenting an in-depthin-depth study of this complex rangeränge of problems;Problems; the German translation has been published latelate inin 1991 by the German AIDS-Hilfe äsas "Mann-männliche"Mann-mannliche Liebe inin den Zeiten von AIDS" (Man-to-Man Love under the Impact of AIDS), AIDS-FORUMAIDS -FORUM D.A.H. DA.H. Vol. VII.

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4545

GAY MEN AND HEALTH PROMOTION

Rainer Schilling, head of dept. "Homosexual and Bisexual Men",Men" Deutsche AIDS-Hilfe

The concept for prevention of the Deutsche AIDS-Hilfe isis based on the WHO Ottawa Charter for the Promotion of Health from 19861986.. The general aim of health promotion is to enable people to have a greater degree of self-deter­self-deter- mination with respect to their health and thus puts them inin a position to im­im- prove their health. Health promoting measures affect the individualindividual asäs well asäs the society and the environment. In terms of the prevention of AIDS among gay men, this aim sets up some questions: First, what can we do in order to give gay men a broader rangeränge of behaviour patterns and more self-determination? Furthermore, how can we en­en- able them to deal with the risks of HIV-infection, of sero-positiveness, and of the illness in such a way that they can achieve the best possible health? InIn brief, what can we do to increase the individual'sindividual's ability to behave inin a competent way? The concept which helps to achieve this aim isis named "structural preven­preven- tion" by the Deutsche AIDS-Hilfe. This term refers, on the one hand, to the complex interrelation between personal contributions to health and the social environment, and, on the other hand, it includesincludes primary, secondary and terti­terti- ary prevention.preventlon. What do we mean by "behaving inin a competent way"? Literature differ­differ- entiates between various types of social behaviour and various levelslevels of beha­beha- vioural orientation, which come together inin individualindividual behaviour and can com­com- pete with each otherother.. The first printed media for homosexual men relied on providing knowledge or just giving the message of safer sexsex.. They were thus designed to reach the levellevel of rational behaviour. The ideaidea behind was that knowledge and standardized messages given with a certain frequency would automatically lead to a change inin behaviour. We know, however, and not only since the relapse discussion, that the stimulus-response model does not do justice to sexual reality. Our aim is to reinforce the behavioural patterns and values which facilitate more self-determination for the individual.individual. Here we must always bear in mind that behaviour in a given situationSituation isis the result of competing needs, tech­tech- niques and risks. The prevention dilemma, for example, "consists ofofweighing weighing up health against sexual impulse,impulse, the conscious control of sexual intercourseintercourse against the way a person sees himself in terms of his sexuality, the risk of infection against that of loneliness."loneliness. " (Michael Pollack, Homosexuelle im Zei·Zei- chen von AIDS, Berlin 1990, p.1p. 106, 06, translated from German)

47 What values should be reinforced in prevention, and what is the greatest obstacle when itit comes to self-determination in the behaviour of homosexual men? Is it inadequateinadequate self-acceptance, or an impaired identity,identity, feelings of guilt or shame, or homophobia? Regardless of how we want to describe it, it leads in the final analysis to the well-known motto:motto: emancipation is prevention.prevention. The D.D.A.A.HH.. concept for pre-pre­ vention among homosexuals was from the very Startstart emancipationary, and aimed at providing a positive feeling about the homosexual world and individual lifestyles. Identity and self-esteem are essential prerequisites for the acquisition of the ability to behave competently.competently. Homosexual sexuality must be promoted both on the rational and the emotional level and the tendency to withdraw from sexual activity must be counteracted, particularly because self-esteem is so closely linked to sexuality in the case of homosexual menmen.. This is by no means just applicable to men who have been tested äsas negative or not tested at aall II.. The prevention campaign of the Deutsche AIDS-Hilfe for gay men does not exclusively aim at preventing each and every new infection. The goal is to increase health promotion for both men with HIV/AIDS and men at risk. While prevention in its traditional sense relates only to potential disorders and deficits, health promotion relates to a new quality of life on the individual and the community level. The promotion of a social atmosphere which is positively inclined towards homosexuality is an essential part of structural prevention. The fight against section 17S,175, and getting rid ofofthe the classification of homosexuality asäs an illness are equally important.important. Acts of aggression against homosexuals and the subtle everyday discrimination must also be combattedcombatted.. Our concept for prevention is implementedimplemented inin two different ways. On the one hand, we use various media, ee..g. pamphlets, posters, post cards, educational material, give-aways likelike beer mats, matchbooks, T-shirts and video-tapes, among them safer sex video clips and a porn stripstrip.. Since the media portray homosexual lifestyleslifestyles and gay sexuality without taboo, they can easily cause offence to the general public. However, we cannot do without being openopen.. Printed media of this kind do not only help to convey the message of safer sex to the subgroups of homosexual men but also build up the self­self- esteem of the individual belonging to one ore more specific gay scenesscenes.. We are, however, aware of the fact that printed media are not enough to achieve our aims inin prevention. Even a poster with the strongeststrängest message, or aa brochure which has been designed inin thethe best didactical and methodical way possible can only be effective for a short period of timetime,, ifif theythey are not sup­sup- ported by other means of communication. That's why we also employ personal communication, e.g.e. g. inin streetwork at gay locations,locations, inin thethe locallocal AIDS self-help organizations, inin discussion evenings, and safer sex workshopsworkshops.. Our concept for prevention differentiates between thethe followingfollowing targettarget groups: coming-out homosexuals, leatherleather men, bisexuals, sado-masochist ho­ho- mosexuals, promiscuous homosexuals, closetdoset homosexuals, disco-goers, largelarge town homosexuals and country-side homosexuals. InIn our posters, we also dif­dif- ferentiate according to thethe places of sexual and social encountersencounters:: pubs, discos, pick-up spots,Spots, parks, saunas. Some posters are restrictedrestricted to different formsforms of

48 sexual play or partial aspects of sex: kissing, oral sex, fist fucking, sado-maso­sado-maso- chchism, ism, rimming (in preparation), golden shower (in preparation). Other posters promote the ideaidea of solidarity, or are aimed at counteracting the exclusion of people with HIV and AIDSAIDS..

In the ideal case, our posters have three importantimportant aspectsaspects:: •. a message about safer sex, •. the presentation ofofa a sexual situation,Situation, •. the presentation of a specific target group, and/or a specific placeplace..

The importance given to each of these aspects varies from poster to poster. ItIt should be clear why we produce very few or indeedindeed hardly any posters at all for homosexuals in general asäs target group. Such posters would not achieve what we are aiming at, i.e.i. e. promoting the individual'sindividual's ability to behave inin a competent way by improving his self-esteem. Our printed media are distributed inin homosexual meeting places. This way, we can reach many homosexuals: those tested asäs negative, the untested, and those with HIV and AIDS. All these gay men are appealed to inin most of our brochures and leaflets which convey specific messages and informationInformation.. Since our posters and brochures also carry messages about primary prevention, the objection could be made that they are thus hardly suitable for reinforcing the self-esteem of homosexuals who are HIV-positive. This must not be the casecase.. Given that we have interpretedinterpreted the feedback correctly, we can assume that our posters at leastleast lessen their feelings of guilt and shame resulting from the stigma of being homosexual. It is evident that a successful homosexual coming-out and a self-assured homosexual identity are the prerequisites for coming-out asäs an HIV positivepositive.. On the basis of recent research we also know that there isis a correlation be­be- tween identity and survival time and between identityidentity and making use of the available health care facilities. For us, this isis unmistakable proof of the im­im- portance and necessity of work aimed at reinforcing identity,identity, since this work does not just solely have an effect inin primary prevention. Another aspect is pointed out by Martin Dannecker inin his new book: ""...... even the mildest threat of punishment expressed to people infectedinfected with HIV and ill with AIDS by their environment may trigger off a severe psychic crisis. Such a crisis cannot be coped with other than by assigning a value to homo­homo- sexuality, i.e.i. e. a 'revaluation' of that which isis experienced asäs being repre­repre- hensible."hensible. " (Martin Dannecker, Der homosexuelle Mann imim Zeichen von AIDS, Hamburg 1991, p.92)p. 92) Through our accepting approach, we can give help towards coping with a crisis. All our material and communication offers are aimed at upgrading ho­ho- mosexuality. It should be mentioned that any censorship can increaseincrease the feeling of inferiority and must therefore inevitablyinevitably have an effect on primary, secondary and tertiary prevention. It was explained that identityidentity and self-esteem are essential prerequisites of the abilityabilityto to behave competentlycompetently. . This means

•. being self-determined inin sexual contexts,

49 .• beingbeing ableable toto dealdeal withwith thethe riskrisk ofof infection,infection, .• beingbeing ableable toto dealdeal withwith beingbeing seropositive,seropositive, .• beingbeing abletoable to dealdeal withthewith the illness.illness.

Obviously,Obviously, thisthis isis moremore thanthan justjust preventing HIV-infections.HIV-infections. No doubt, identityidentity andand self-esteemself-esteem areare necessarynecessary toto prevent other diseases äsas weil,well, particularly STDs.STDs. ItIt isis evident,evident, thatthat reinforcingreinforcing identityidentity isis thethe prerequisite forfor gay men's health promotion inin general, not only focussedfocussed on AIDS. Considering thethe WHO-definitionWHO-definition of of health,health, itit could be said,said, thatthat therethere isis no gay health without gay identity.identity. As Ursula Lehr, Health Minister at thatthat time,time, expressed itit at thethe 3rd German AIDSCongressAIDS Congress (on25. (on 25.1111..1990): "It isis a matter of making people feelfeel thattheirthat their lifelife isis worth livingliving and helping themthem toto see thatthat therethere are positive ways of organizing theirtheir liveslives inin the future.future. Only those people who really have aa positive attitude towardstowards their their lives are motivated to protect their health." This must be thethe gay community's perspective. We have to discuss the ways of how toto establish structures and organizations for gay health promotion.promotion.

5050 "HARM REDUCTION" AND THE POLITICAL CONCEPT OF THE "WAR ON DRUGS" IN GERMANY

Ingo IIjatlja Michels, DrDr.. phil., co-director, head of dept. "Drug Users and Prison Inmates", Deutsche AIDS-Hilfe

Although highly dependent on the respective governments and their health and drugs policies, drug serviceService organizations have started to examine their own role within the systemSystem inin a critical way, particularly inin the lightlight of the pressure resulting from the worsening AIDS crisis among drug consumers and the developing self-help organizations and competence of those affected. The idea of abstinence and the method of long-termlong-term therapy remained decisive pre-requisites inin treating opiate consumption until the latelate 80s, whereby use and addiction were seen asäs being synonymous. The amendments to the Federal Narcotics Law inin 1972 and 1981 led,led, asäs Bossong put it,it, to a sort of "neo-corporative systemSystem of addiction control, the structural core of which lay in a closedose intertwining of political intentions,intentions, institutionalinstitutional and professionalProfessional iinterestsnterests and administrative decisions; ... opponents and alternative methods of treatment, discourse accepting addiction and against prohibition were systematically excluded" (Bossong 1991)1991).. It was the AIDS crisis which first led to a revision of the prevailing drug policy, and then only very gradually and inin the face of massive resistanceresistance.. Total acceptance of the old concepts started to falter with regard to two aspects, not least also due to the work of the AIDS serviceService organizationsorganizations::

•. the question of using Methadone asäs a substitute for heroin - a form ofoftreat- treat­ mentmentwhich which was still strongly opposed and prohibited inin GermanyGermanytill till 1987; •. the question of distributing sterile syringes to intravenousintravenous drug users.

There is still much resistance inin both cases, although it has weakened and isis now presented in a different wayway.. The main arguments inevitablyinevitably amount to the reproach that thus addiction isis prolonged and given a pharmacological basis. Up to now, the Federal Government and the responsible Federal Depart­Depart- ments have without reservation taken on this point of viewview.. The so-called "National plan for combatting drugs", which was passed by the government inin June 1990, is in line with thisthistradition. tradition. This plan was introduced with pathos inin a declaration by the Federal Chancellor Helmut KohlKohl:: ""...... the fight against the misuse of drugs is an enormous challenge for all democratic systemsSystems within society."society. " (Kohl 1990) Preventive measures are hardly understood asäs a social or socio-cultural mattermatter.. Although it has longlong since been proven by the social sciences that

51 preventive strategies which are based on the idea of fear are ineffective, millions of DM are spent year by year on such "educational programmes" with thethe main ideaidea of "..." ... creating a climate, which energetically counteracts the glorification of drugs and the playing down of illegal drugs, while at the same time also decisively opposing the stigmatization and exdusionexclusion of addicts." (National plan for combatting drugs "NRB", p.p.19).19). This amalgamation of punishment and help in one model is apparent throughout thethe plan of the Federal Government, and is permeated with war metaphors on the one hand, and charitable attention anon the other. Furthermore, the government dedareddeclared its intention to initiate the following:

.• ratification oftheof the new UN AddirtiveAddictive Drugs Agreement of December 1988; .• confiscation of property or fines for serious cases of drug trafficking; .• making money laundering a criminal offence; .• extension of investigatory methods to the police by using under-cover investigators, under-cover observation, technical means and computerComputer based networks of information (all within the competence of the police and also used to combat terrorism).

Moreover, the Federal Government does not only plan to extend the access to "organized crime", knowing very well that the possibilities of really getting to the "dirty money" of the large dealer organizations or of confiscating their assets are extremely small. They are estimated by experts advising the Federal Government to amount to perhaps five percent of the assumed total profits in illegal drug trafficking (Albrecht 1990)1990).. The government also plans to combat street dealing, particularly small deals involvinginvolving heroin, and to destroy the open scene, even though, particularly for an effective AIDS prevention, access to the open scene is extremely important.important. Furthermore, prison authorities are to be provided with more personnel and equipment, specialized public prosecution is to be institutionalized,institutionalized, the Federal Bureau of Criminal Investigation (BKA) is to get 400 more civil servants, and the customs, too. In the Federal Republic of Germany, drug users are subjected to a legallegal Systemsystem which is based on a mixture of punishment and assistance. The principle of "therapy instead of punishment" isis firmly established inin the Fe­Fe- deral Narcotics Law. Drug addictsaddirts who are sentenced to prison can, under certain conditions, be treated inin a therapeutic community insteadinstead of going to prison. What inin brief has been the experience with thisthis principle? The number of consumers is estimated toto be between 60,00060,000 and 90,000.90, 000. The number of people who startStart taking drugs, particularly heroin,herein, has increasedincreased inin the lastlast few years and amounts probably toto 3,0003, 000 or 4,0004, 000 persons per year. ItIt isis difficult to estimate how many people stop takingtaking drugs. There are approx­approx- imatelyimately 3,0003, 000 places available forfor treatingtreating people inin therapeutictherapeutic communities or psychiatric clinics. Per year, about 9,0009, 000 drug consumers make use of drug therapy, up to 70% are forcedforced to do so by lawlaw.. About 70% drop out of treatment. Of the remaining 30%, about 1/3 remainsremains off drugs completelycompletely. . About 10,00010, 000 drug consumers are inin prison every year, thatthat isis toto saysay between 15 and 50% ofofthe the totaltotal prison population.

52 The concept behind thethe 1981 amendment of thethe Federal Narcotics Law,Law, which waswas aimed toto deter dealers and encourage drug users toto undergo therapy,therapy, has failed.failed. Even thethe Federal Government admitted thisthis inin a reportreport on thethe administrationadministration of justicejustice according toto thethe Federal Narcotics Law inin thethe yearsyears 1985 toto 1987: in these years,years, the number of criminal offences againsttheagainst the Federal Narcotics Law which were investigated by the police rose drastically fromfrom 60,60,000 toto 75,75,000. Recent statistics say that nowadays about 90,90,000 investigationsinvestigations are carried out.out. The number of criminal proceedings has also increasedincreased fromfrom 25,25,000 to 30,30,000 per annum.annum. Of these, two thirds are in connection with the so-called basic offences, in particular acquisition,acquisition, possession and dealing for individual consumption.consumption. Wholesale trading only playsaplays a role in 9%9% oftheof the proceedings, and "dealing" dealing by gangs" in Justjust 1/21/2%!% ! About 3/4 of the proceedings are in connection with offences where cannabis is involved, 80% of which are then finally dropped. However,However, people who have been addicted for many years are always more severely punishedpunished for quite minor offences. In the meantime, there are about 2020,,000 long-term addicts who are socially despised and destitute,destitute, and more than 30%30 % are HIV positive or ill with AIDS (the prevalence of HIV is considerably lower in therapeutical institutions and on average, itittotals totals 10-20%)10-20%).. The debate about the direction drug policy should take has been rekindled against this background and cuts across all polpoliticalitical partiesparties,, although with somesame clear differences.differences. The Conservatives adhere to a very strict rejection of anti-prohibitive demands.demands. They are against a decriminalization and view the concept of "härm"harm reduction" with scepticismscepticism.. So, for exampleexample,, the Deutsche AIDS-Hilfe was recently put under pressure to withdraw itsits new series of posters for intravenous drug users with the messages "safer use" and "safer sex" which were financed by the Federal GovernmentGovernment.. The reproach was that they would present illegalillegal drugs asäs being "harmless" and clearly show a basic attitude of acceptance which could not be promoted with public fundsfunds.. The Social Democrats have also so farfar not taken a consconsistentistent position, and have only spoken inin favourfavour of a cautious opening up of attitudes towardstowards a liberal drug policypolicy.. HoweverHowever,, particularly due to thethe PR activactivitiesities of thethe Young Socialists (the young peoplepeople's's organorganizationization of thethe SPD)SPD),, therethere has been a clear trendtrendtowardsachange. towards a change. TheTheworking working group groupon on drug polpolicyofthe icy of the SPD members of the Bundestag has proposed an amendment toto thethe Federal Narcotics LawLaw which takes up to a largelarge degree the the longstandinglongstanding demands made by the the criticscritics of a repressiverepressive drug policypolicy.. InIn the the amendment, thethe SPD demands: 1.t. the extension and clarificationclarification of thethe permissibility of treatmenttreatment wwithith substitute drugs (in-patient(in-patient and out-patient treatment); treatment); 22.. investigationinvestigation intointo thethe administrationadministration of original drugsdrugs;; 33.. clarification concerning thethe legalitylegality ofof providingproviding singlesingle use syringes,syringes, andand thethe setting up of so-called "shooting"shooting rooms rooms"" where drugs drugs can can bebe injected injected underunder hygienic conditionsconditions andand with medicalmedical assistanceassistance inin orderorder toto avoidavoid thethe riskrisk ofof HIV infectioninfection or an overdose;overdose; 44.. improvedimproved possibilities forfor droppingdropping legallegal proceedingsproceedings (which(which is,is, forfor example, typicaltypical inin thethe NetherlandsNetherlands:: accordingaccording toto thethe "opportunity"opportunity prin­prin- ciple"ciple",, thethe policepolice or or publicpublic prosecutors prosecutors can can drop drop proceedingsproceedings;; thus thus offers offers of of assistanceassistance can can be usedused of of one'sone's ownown freefree will;will;

5353 55.. refraining from criminal proceedings inin accordance with the principle of "helping instead of punishing", and dispensing with the so-called state evidence ruling, which grants mitigation of sentences inin cases where others are incriminated, but has not to any extent ledled to gaining access to the largelarge dealer organizations - indeedindeed,, it has solely ledled to an atmosphere of lessless solidarity among consumersconsumers..

At a hearing of the Bundestag Health Committee on 4th December 1991 on suggested reforms to the Federal Narcotics Law, the majority of the invitedinvited experts, including myself, pointed out that itit isis absolutely essential to de­de- criminalize drug consumers. My statementStatement was asäs follows follows:: "Unfortunately, we have begun to intensivelyintensively discuss decriminalization and the improvement of the living conditions only inin the lightlight of the spread of HIV and AIDS among drug consumers ...... Of all people with HIV and AIDS drug consumers get the worst medical treatment and carecare.. To them maintenance treatment can be a very importantimportant element of assistance and support. This we have concluded from studies and also experienced inin our practical workwork.. We have many contacts to the locallocal AIDS-Hilfe organizations as äs well asäs the self-help groups of those in maintenance treatment, and to drugconsumersdrugconsumers.. The livingliving conditions of these people have been improved considerably thanks to Me­Me- thadone maintenancemaintenance.. This isis an indisputableindisputable fact. Maintenance treatment also stabilizes the immune system,System, asäs was shown by studies from the Essen Clinic which were presented atatthe the VII. InternationalInternational Conference on AIDS inin FlorenceFlorence.. Whether this results from the opiate or the improvedimproved livingliving conditions isis not yet clear and needs further discussion. But inin either case maintenance treatment isis concrete help for survival."survival. " (Uncorrected proceedings of the 20th Session of the Health Committee, 4th Dec 1991; Public Hearing on the Draft of a Law to Amend the Federal Narcotics Law; Drucksache 12/934) For the first time in the history of the Parliament also a drug consumer answered questions in this hearing - namely my colleague Werner Hermann, co-ordinator of the self-help initiativeinitiative JESJES.. He commented: ""ToTo give you an idea ofofthe the importanceimportance of Methadone programmes, letlet me say something about my personal historyhistory.. Il think it isis representative, because during my work in the self-help group JES asäs well asäs in the German AIDS-Hilfe Il have daily contact with people who are still inin the drug scene. To my person: Four years ago, there was a police warrant out for my arrest. Il had several abscesses on my legs, and no flatflat.. Il went to the AIDS-Hilfe and then intointo hospital. Finally, the AIDS-Hilfe found a place for me inin a Methadone programmeProgramme.. Since then, my lifelife has changed completely. Il had been a no-good for twenty yearsyears.. Il had not been on the edge of the drug scene, asäs you might perhaps think, but in the midst of itit.. Il had stolen, Il was a dealer, a fixer. The fact that Il am here with you now and that Il do this work really means, of this you can be sure, that my lifelife has changedchanged.. Il don't steal anymore, Il am a normal tax-payer, Il go to work at the AIDS-Hilfe, and inin the lastlast one and a half years, lI have not been ill for one day. Before Il die of AIDS, and Il have been infected for 10 years, Il have found something, namely this self-help for people suffering the same fate,fate, which gives meaning to my life.life. This isis a tremendous gain for me towards the end of my life.life.

54 LikeLike mostmost peoplepeople lI don'tdon't wantwant toto bebe aa no-good,no-good, andand lI amam veryvery happyhappy thatlgotthat I got thethe Chancechance toto managemanage my lifelife inin aa differentdifferent way.way. lI oweowe itit toto MethadoneMethadone ...... l I think,think, therethere isis nono Chancechance anymoreanymore toto findfind aa solutionsolution forfor thethe problemproblem ofof aa minorityminority numbering samesome millions inin Europe -- namelynamely thethe minority ofof drugdrug consumers,consumers, particularlyparticularly thethe intravenousintravenous drugdrug consumers.consumers. IfIf you includeinclude Russia, ifif youyou includeinclude thethe formerformer Eastern Bloc, ifif youyou includeinclude southernsouthern Europe -- theythey areare millions. InIn thisthis Europe of political change, a rolerole must be foundfound forfor thesethese peoplepeople differentdifferent fromfrom thethe traditionaltraditional one.one. That isis what we demand. Human rightsrights are rightsrights for for us,us, too.too. TheThe key problem isis that that we are deprived of thesethese rights by lawlaw when we are jailedjailed or incapacitatedincapacitated inin psychiatric institutions.institutions. Therefore, everything leadsleads toto thethe question:question: IsIs thethe European and internationalinternational community of states prepared toto redefine thisthis problem, toto really abolish thethe lawslaws and thethe prohibition, and toto control thethe drug problem from thethe producer countries throughthrough toto thethe demand? This would mean thethe elimination of the organized internationalinternational crime.crime. This would certainly not end drug use, but it would be an opportunitytoinvolvethoseaffectedopportunity to involve those affected in thesolutionthe solution oftheirof their problems.problems. lI amsuream sure you believe me when lI say that it is not possible at all to find a solution to these Problemsproblems without those who are afferted.affected." (Uncorrerted(Uncorrected proceedings/ibid.) Just recently there has been a resurgence of the debate on drug policies. On the one hand,hand, politicians, lawyers and drug workers have demanded a revision of repressive drug policies, on the other hand, the courts in LübeckLubeck in Northern Germany have caused considerable controversy by arguing that it was unconstitutional to punish the consumption of the largely innocuous drug hashish (cannabis) while the consumption of dangerous drugs likelike alcohol and nicotine remains unpunished. The citizen has a "right to euphoria"euphoria".. This decision caused a fierce public debate (see "DIE ZEIT" of 2828..22..1992)1992).. InIn the well-known German weekly magazine "DER SPIEGEL" of 2.32. 3..1992, the Bavarian minister of the interiorinterior Stoiber was quotedquoted:: "Those approving the free use of cannabis are irresponsiblyirresponsibly accepting the deaths of thousands of young peoplepeople.."" But itit was also noted thatthat "Many social democratic politicians inin the German UinderLänder no longerlanger support thethe war on drugs with excessive police armament, legislationlegislation and powers for lawlaw enforcement agencies." For several years, workers inin AIDS and drug counselling asäs well asäs thethe self­self- help groups of junkiesjunkies have been tryingtrying to organize and improveimprove thethe livingliving conditions of drug consumers and toto offer appropriate AIDS-specific preven­preven- tiontion work by establishing contactcontact centrescentres and syringe exchange projects,projects, supporting Methadone treatment,treatment, and demanding "shooting"shooting rooms"rooms" where intravenousintravenous drugs can bebe consumedconsumed underunder hygienichygienic conditions.conditions. ThereThere are stillstill structural barriers, suchsuch asäs special special police operationsoperations toto smashsmash drugdrug scenes,scenes, asäs was thethe casecase inin Bremen, HamburgHamburg oror Cologne,Cologne, wherewhere thethe policepolice eveneven mademade arrests inin thethe contactcontact centrecentre.. NowNow Il wouldwould likelike toto gogo intointo thethe epidemiologyepidemiology ofof thethe AIDSAIDS crisiscrisis amongamong intravenousintravenous drug drug consumers consumers whichwhich is is the the result result of of the the obstruction obstruction to to structural structural preventionprevention beforebefore documentingdocumenting somesame modelsmodels ofof acceptance-orientedacceptance-oriented AIDSAIDS andand drugdrug help.help. InIn this this outline outline ofof the the currentcurrent situationSituation ofof HIVHIV prevalence prevalence amongamong intravenousintravenous drugdrug consumersconsumers inin GermanyGermany Il referrefer mainlymainly toto datadata collectedcollected byby UrsulaUrsula KochKoch betweenbetween JulyJuly 19901990 andand MarchMarch 19911991 asäs part part ofof aa researchresearch projectproject forfor the the GermanGerman AIDS AIDS Hilfe Hilfe which which was was published published recently recently::

5555 • The randomrandom samplesample hadhad 6464..2%2% malesmales andand 35.8%35. 8% females.females. • The women were on averageaverage younger than than thethe menmen.. • The levellevel of education was below thethe nationalnational average,average, forfor thethe femalesfemales relativelyrelatively lessless so thanthan forfor thethe malesmales.. • More thanthan one thirdthird had acquired aa vocational qualificationqualification.. • The majority were singlesingle.. • The femalesfemales livedlived more frequentlyfrequently togethertogether with a partner or friend,friend, males more frequentlyfrequently inin institutionsinstitutions (especially (especially the the 26 to to 30 years' olds). The 1515 to to 20 years' olds were particularly often without fixedfixed abode and livedlived more frequentlyfrequently inin hotelshotels/hostels./hostels. •. Main sources of incomeincome were, forfor males: state supportSupport and "illegal" income;income; for femalesfemales:: state support, parents/relativeslfriendsparents/relatives/friends and prostitutionProstitution.. •. More males had custodial eexperiencexperience and forfor a longerlanger totaltotal periodperiod.. •. More than two thirds livedlived inin conurbations. •. 43% were classified asäs belonging toto thethe public scene, 37% toto thethe private scene, 20% were in neither, or livedlived inin institutions.institutions. •. Overall HIV prevalence was 1919..6% (21(21..8% forfor females, 18.4%18. 4% forfor males) •. The higher HIV prevalence for females was closely related to prostitutionProstitution..

FeaturesFeatures,, HIV-Prevalence and Sex

Feature Males Females Total

Sample 21.21.88 18.418.4 19.6

Scene PublicscenePublic scene 1818.8.8 1515.7.7 1616.8.8 Private scene 22.222 .2 1919.7.7 20.720.7 Neither/institution 27.8 21.6 23.4

Experience äsas prostitute At present 36.236 .2 35.3 35.935 .9 Not at present 38.3 25.025 .0 33.8 None 8.48.4 17.1 14.914.9

Prison experience Yes 35.635 .6 19.819.8 23.723 .7 No 11.511 .5 13.813.8 12.512.5

IfIf we assume thatthat of thethe estimated 100,100,000000 intravenous drug consumers samesome 20% are HIV-positive (i.(i.e.e. 20,20,000;000; c.c.f.f. thethe conservative estimate of the Federal Health Office which puts thethe figurefigure near 10,10,000),000), thenthen thethe data available show thatthat thethe HIV prevalence inin drug-free therapytherapy institutionsinstitutions isis presently between 5 and 15%.15%. The raterate isis twotwo toto threethree timestimes higher inin thethe open scene and inin prisons.prisons. GivenGiven samesome 9,9,000000 drug addicts inin in-patientin-patient therapytherapy annually, thenthen at presentpresent perhapsperhaps between 400 and 1,1,400400 ofthemof them will be HIV-positive. Between 1,1,500500 andand 3,3,000000 HIV-positive drug consumersconsumers are toto be foundfound inin German

5656 prisonsprisons accordingaccording toto thethe availableavailable estimatesestimates ofof HIV-prevalenceHIV-prevalence andand figuresfigures fromfrom thethe authorities.authorities. However, thethe majority -- between 6060 andand 90%90% -- isis toto bebe foundfound inin thethe privateprivate oror public scene,scene, andand theythey areare eithereither reachedreached throughthrough thethe contactcontact centrescentres oror byby self-helpself-help groups,groups, oror eiseelse livelive withoutwithout anyany support.support. Finally, severalseveral hundredshundreds areare inin treatmenttreatment inin clinicsclinics forfor seriousserious AIDS-related illnesses.illnesses. TheThe challengechallenge facingfacing thethe public health Servicesservices isis veryvery clearly demonstrateddemonstrated by thesethese figures.figures. AndAnd thethe maintenance treatmenttreatment with Codeine (Remedacen)(Remedacen) andand /orfor Methadone (L-Polamidon)(L-Polamidon) isis an essential prop of assistance inin thisthis field.field. AtAt present,present, some 3,3,000000 intravenousintravenous drug consumers inin maintenance treatmenttreatment useuse L-Polamidon and some 5,5,000000 Codeine.Codeine. This data correlatescorrelates with thethe resultsresults of a study by Kleiber/Pant of thethe Social-Social­ Pedagogic Institute Institute inin Berlin (SPI) who, although concluding thatthat therethere was no statistically relevantrelevant change inin thethe sero-prevalence of HIV among drug con-con­ sumers between samples inin 1988/89 (17%) and 1990/91 (16.(16.3%).3%), observed aa marked divergence between the therapy groups and non-therapy groups:groups: "Even inin thethe firstfirst survey in 1988/89 a higher HIV prevalence could be observed in thethe non-therapy area (public and private scene: 20.20.3%)3%) than in the therapy area (out-patient and in-patient:in-patient: 15.15.4%)4%).. This difference has increased con-con ­ siderably according to the data for 1990; for the non-therapy area a pre-pre­ valence of 27.27.4%4% was determined, against 7.7.6% for the therapy area." Kleiber and Pant conclude: "The increasing divergence of the HIV pre­pre- valence between Junkiesjunkies in therapy and junkies in the public scene requires the establishment of low-threshold secondary prevention measures (street workers, medical and psycho-social counselling, supervised accommodation projects) since obviously many HIV-positive drug consumers prefer a life in the public scene to the problematical prospects of an HIV-positive ex-drug consumer with no Job,job, no flat and no social network."network. " (Kleiber, D & Pant, A.: HIV-Pravalenz,HIV-Prävalenz, Risikoverhalten und VerhaltensanderungenVerhaltensänderungen bei ii..vv.. Dro­Dro- genkonsumenten. Ergebnisse einer sozial-epidemiologischen Studie; Berlin 1991) What are the HIV-relevant riskrisk situations, what do we know about them,them, what changes can we observe, and what isis the importanceimportance of in-patientin-patient treatment? IfIf we looklook at thethe main routesroutes of HIV transmissiontransmission among intra­intra- venous drug consumers, namely needle sharing, drug sharing and unsafe sex, we find thethe followingfollowing aspects:asperts: InIn Kleiber's as äs well weil asäs inin Koch's study we findfind thatthat needle sharing isis declining asäs a relevantrelevant HIV transmissiontransmission risk,risk, but isis stillstill practised by somesame drug consumers.consumers. ButBut we must be carefulcareful toto avoid gener­gener- alizations. We cancan certainlycertainly assumeassume thatthat thisthis modemode ofof transmissiontransmission isis known known toto virtually all drug consumersconsumers inin Germany.Germany. Nevertheless,Nevertheless, inin thethe KochKoch study 56%56% reportreport thatthat theythey still shareshare syringessyringes (26%(26% rarelyrarely (7x),(7x), 15%1 5% sometimessometimes (27x),(27x), 9%9% frequentlyfrequently (144x).(144x), and 6%6% veryvery frequently frequently (260x)).(260x)). AccordingAccording toto thisthis study,study, habitualhabitual needleneedle sharingsharing isis frequentfrequent inin institutionalinstitutional frameworks.frameworks. ThisThis findingfinding indicatesindicates thatthat drugsdrugs areare stillstill consumedconsumed underunder condi­condi- tionstions wherewhere theythey areare forbiddenforbidden oror tabooedtabooed (e.g.(e. g. inin prisonprison oror therapeutictherapeutic com­com- munities).munities). HabitualHabitual needleneedle sharingsharing waswas alsoalso linkedlinked toto thethe availabilityavailability ofof syringes,syringes, especially especially at at nightnight,, onon thethe weekends weekends and and in in institutionsinstitutions.. Moreover,Moreover, itit isis frequent frequent inin stablestable partnershipspartnerships oror amongamong goodgood friends.friends. ThisThis showsshows that that thethe networknetwork of of syringe syringe supplies supplies is is still still inadequateinadequate and and that that the the criminalization criminalization of of

5757 drug consumers stronly impedesimpedes inin the implementationimplementation of HIVHtV prevention measures. As far asäs drug sharing isis concerned, the Koch study concludes that this "hidden" risk has been overlooked largelylargely.. In the sample 36% reported that they apply front/back-loading together with needle sharing (2% always and 7% often). Only 15% inin both studies cleaned syringes adequately, although most of them said they use cleaning rituals (in particular washing out with cold or hothat water) which they think to be sufficient. Despite awareness of the HIV transmission risk through sexual contacts, regularregulär use of condoms was found to be relatively lowlow inin both studies. The data show that there isis still no adequate sexual counselling inin the drug serviceService systemSystem and that a fixation of the message merely on rational considerations isis inadequate, because there are addiction dynamics and driving forces both inin relationship to drug use and sexual behaviour, asäs well asäs emotional relation­relation- ship patterns (e(e..gg.. a monogamy ideal)ideal) which counselling should take intointo account. There is also a need for radical rethinking inin health policies: In the "National Anti-Drugs Plan" of the German government a core group of 15,00015, 000 - 20,00020, 000 "long-term junkies" is mentionedmentioned.. It isis defined in negative terms asäs a group which "seduces" others to consume drugs. "The possessors of drugs are of interest to the police since they frequently deal on a small scale and can thus be multipliers of drug use ...... " (Nat. Anti-Drugs Plan; ibid;ibid; p.33).p. 33). But here itit would be important to involveinvolve these persons in,in, for example, syringe distri­distri- bution projects, using this potential for prevention. InIn a snow-ball systemSystem they could supply sterile syringes together with the drugs to private customers who do not frequent syringe exchange places of the public health system.System. This seems to be very important, since it isis clear that the injectioninjection of drugs isis basically a "private" actart.. In the Koch study, nearly 60% reported they use drugs "only or mainly inin private", whereas only 12% do this "mainly" or "solely in public"public".. In our study we mainly reached drug consumers inin contact with the AIDS and drug serviceService system.System. A study among the frequenters of the "Platzspitzszene" in ZurichZürich has shown that even in this public drug scene some 40-60% of the irregular consumers had not yet come intointo contact with the AIDS and drug serviceService systemSystem.. 50 - 60% had not even come intointo contact with law enforcement agencies (Kunzler,(Kanzler, H: Analyse der offenen Drogenszene "Platzspitz" in ZurichZürich.. Sozio-bkonomischeSozio-ökonomische und medizinische Aspekte. Disser­Disser- tation; ZurichZürich 1990). Indications of a lacklack of attention paid to the "private scene" in the research isis to be found in de Loor's study of Dutch Ecstasy consumers (de Loor, A: The drug XTC does not existexist.. A survey; Amsterdam 1991). This sector of consumers has asäs yet hardly been reached at all by the specialized services,Services, although consumers of Ecstasy and cocaine need not be a target group, in the narrow sense, for AIDS-prevention messages (cf.(c. f. Cohen, PP..: Cocaine use in Amsterdam inin non-deviant subcultures; Amsterdam 1989, and also Waldorf, O/Reimann,0/Reimann, D/Murphy, SS..:: Cocaine changeschanges.. The experience ofcrf using and quitting; Philadelphia 1991)1991).. Rather they should be informedinformed about "hidden risks", for example by the media. It must be accepted that there is a side effect: the rational explanation of consumption patterns (cf(cf.. Dutch flysheet on Ecstasy) will also be received by non-consumers who may be

58 encouraged toto trytry drugs. But firstly,firstly, thisthis isis almost always a one-off experiment, äsas with cannabis, and secondly, risky formsforms of consumption are minimized by clandestine use.use. Practising doctors are very important inin the Systemsystem of HIV counselling and HIV testingtesting forfor intravenousintravenous drug consumers.consumers. They are also importantimportant for prescribingprescribing and issuingissuing "legal" opiatesopiates or opiate substitutes.substitutes. Some 33% of the study samples received such drugs (of which 61 % Codeine, 31 % L-Polamidon),L-Polamidon), 80% fromfrom practising doctors and 7% through state programmes.programmes. Therefore, theythey are multipliers for information about methods to prevent HIV.HIV. This applies forfor less risky injection practices,practices, which the doctors and medical per-per­ sonnel can be expected to know anyway,anyway, äsas well äsas the avoidance of HIV relevant sexualsexual practices.practices. It must be noted, however, that medical training does not provide adequate knowledge about drug use and addiction, about the pharmacology of opiates, opiate derivatives and substitutes, or about the psycho-dynamicspsycho-dynamics of addictive behaviour. Neither does it train special abilities for non-directivenon-directive counsellingcounsell ing methods,methods, particularly not for counselling on sexual problems, nor does it convey adequate knowledge about HIV and AIDS and their specific medical and psychopsycho-social-social treatmenttreatment. . Although persons seeking help reactreart positively in particular to acceptance and to non-moralizing attitudes, practising doctors should nevertheless be used for counselling on behaviour relevant to HIV risks, in the context of an inter-disciplinary discourse between doctors,dortors, drug and AIDS serviceService organizations and selfself-help-help groupsgroups.. (In the study of Kleiber & PantPant:: HIV Pra­Prä- valenz, Risikoverhalten und VerhaltensanderungenVerhaltensänderungen bei ii..vv.. DrogenkonsumenDrogenkonsumen-­ ten; Berlin 19911991;; for 6262..6% of those questioned the doctor's surgery was aa place of AIDS prevention; 9292..3% made use of itit;; 8484..9% found doctors credible, about the same asäs thethe values for streetworkers, 8585..11% % and higher than for drug counsellors, 79.379. 3%% and AIDS helpers helpers,, 77.377. 3%).%). Our study clearly shows thatthat prisons are still thethe places with thethe highest riskrisk of HIV-infection. A largelarge number of persons inin the sample had prison eex-x­ perience (71(71% % of the malesmales,, 4141% % of the females)females).. Particularly thethe males had spent longlong periods inin prison -- 1/3 between 2 and more thanthan 5 yearsyears.. Almost half of them continued using drugs inin prprisonison -- 1/3 using heroin between several timestimes daily and several timestimes weeklyweekly.. ThereforeTherefore,, itit does not surprise thatthat the HIV prevalence among formerformer prisoners isis twicetwice asäs high asäs among persons without prison records,records, forfor women even more thanthan threethree timestimes asäs high. This highlights an urgent need forfor HIV prophylaxis and forfor "safer"safer use"use" programmes whichwhich,, ifif no sterile syringessyringes are provided, conveyconvey methods of dis­dis- infectioninfection.. A model for thisthis could be the the procedureprocedure adopted by the the Regensdorf Prison near Zurich.Zürich. Here,Here, allall prisonersprisoners are providedprovided withwith aa ""FirstFirst Aid" kitkit containing disinfection material material forfor syringessyringes.. Without doubt, self-organization of of drugdrug consumersconsumers isis the the bestbest measuremeasure to to gain identityidentity and toto mobilizemobilize thethe potentialpotential forfor self-helpself-help andand healinghealing.. InIn thisthis field,fielet, therethere havehave been positivepositive developmentsdevelopments.. ForFor example,example, inin thethe KochKoch & Ehrenberg studystudy 47%47% ofof the the samplesample reportedreported theythey knowknow self-helpself-help groupsgroups (49%(49% ofof males, 43%43% ofof females)females)..

5959 Group known by (%) ofof::

Group Males Females Total

Narcotics anon. 16 15 16 Junkie Bund 35 39 36 J.E.SJ. E.S 36 42 38 Local Groups 24 23 24 SHG AIDS Help 2 4 3 Name unknown 12 4 9 3 or more named 5 5 5

The best known were the JJ..EE..S with 38% and the Junkie Bund with 36%. Both groups are better known among the females. Of those who said they know of one or more self-help groups, 24% said they themselves are active inin such aa group. We also asked about personal ideasideas to improveimprove the livingliving conditions and about urgent structural and social changes. Here, we found a high degree of agreement with the demands concerning AIDS prevention from the German AIDS-Hilfe (Ahrens, H.;H.; Michels, I.:l. : Drogen-Strategiepapier: Befunde und Stra­Stra- tegien zur AIDS-PräventionAIDS-Pravention imim Bereich AIDS und Drogen. AIDS-Forum D.A.H.,D.A. H., Vol. 1, Berlin 1988, p. 13).

Comments on somesame findings

1. The assessment of recommendations show gender-specific differences: •. Of the females not shooting at present, 69% said that "more out-patient therapy" is important (males 8181%) %) and 39% "more in-patientin-patient therapy" (males 66%)66%).. •. A "more differentiated therapy" isis importantimportant for more females not shooting presently (53%) than males (46%); similarly for female junkies (59%) asäs against male junkies (41 %). •. The legalization of heroin isis importantimportant for 68% female junkies (males 71 %). This aspect is important for more females not shooting at present (44%) than males (41 %)%).. .• For female junkies the availaqilityavailability of injectable Methadone isis lessless importantimportant (42%) than for males (50%) •. Among those not injecting drugs at present, counselling for "safer use" (57%) and "safer sex"(63%) isis regarded importantimportant by lessless females than males (68% and 69% respectively)respectively). . Females not shooting presently assess this aspect slightly higher than males.

2. Between drug consumers and persons who presently do not injectinject drugs the following differences can be identified: •. Out-patient supplies, more rapid availability of detoxication, more out­out- patient therapy, more in-patient therapy and therapy wards inin prison are more important to persons not shooting at present. •. 87% of the persons not shooting presently think itit important to support self-help asäs against 84% of the junkies.junkies.

60 .• TheThe instructionsinstructions forfor "safer"safer use"use" andand "safer"safer sex"sex" areare thoughtthought toto be moremore importantimportant byby personspersons whowho dodo not injertinject drugsdrugs presentlypresently (safer(safer use:use: 65%,65%, safersafer sex:sex : 67%)67%) thanthan by thosethose whowho dodo (safer(safer use:use: 58%,58%, safersafer sex:sex: 53%).53%).

TheThe resultsresults ofof thethe studystudy emphasizeemphasize thethe demandsdemands raisedraised inin thethe "Memorandum"Memorandum onon thethe presentpresent debatedebate on drug policiespolicies inin Germany" fromfrom June1990:June 1990: "Structural"Structural prevention means to to strengthen thethe tiesties which are still intartintact inin thethe communitiescommunities ofof peoplepeople addicted toto drugs and thethe drug scene...scene ... "" Considering thethe currentcurrent AIDSAIDS crisiscrisis among intravenousintravenous drug consumersconsumers (HIV(HIV prevalence 20%), "härm"harm reduction"reduction" strategies must receive unprejudiced support and funding.funding.

Syringe exchange/distribution programmes at drug and AIDS counselling centres.

Since the mid-eighties more and more drug and AIDS counselling centres have integrated the exchange or distribution of syringes in their work.work. The initial uncertainty about possibly encouraging the use of drugs with such measures has given way to an understanding that providing or exchanging syringes is a necessary element of protecting health and a survival aid in drug workwork.. The experience of the lastlast five years has shown that this measure does not contradict other offers such asäs out-patient care or therapy counsellingcounselling.. On the contrary, it offers the opportunity to extend the rangeränge of work, to establish contact with drug consumers who would otherwise stay away from counselling centres. In somesame places the numbers of syringes handed out or exchanged has in­in- creased enormously (Hamburg,(Hamburg, Bremen, Frankfurt/M). InIn other places therethere isis still no effective serviceService (Munich,(Munich, Stuttgart), and inin somesame cases thesethese pro­pro- grammes have asäs yet only a symbolic functionfunction.. At most drug or AIDS counselling centres,centres, sterile syringes are only handed over inin exchange for a used syringe syringe.. If If there there is is a high risk risk of being searched forfor used syringes by thethe policepolice,, asäs for for example inin Bavaria (e(e..g. Nuremberg) these these are not required.required. The MUDRAMUDRA drug drug counselling centrecentre inin Nuremberg distrib­distrib- uted overaver 40,00040, 000 ddisposableisposable syringessyringes inin 1990,1990, eithereither throughthrough streetworkers,streetworkers, theirtheir centres,centres, or thethe onlyonly dispensingdispensing machine inin BavariaBavaria.. InIn thethe firstfirst halfhalf ofof 1991,1991, 18,50018, 500 syringes were were distributed distributed to to thethe scenescene.. 8,0008, 000 syringes syringes and and 4,000 4, 000 needles were sold sold fromfrom the the dispenserdispenser.. A A packpack contains contains 2 2 disposabledisposable syringes, syringes, 3 needlesneedles andand aa MUDRA hygiene hygiene set. set. TheThe importanceimportance ofof aa locationlocation nearnear thethe scenescene forfor anan exchangeexchange programmeprogramme inin citiescities hashas beenbeen demonstrateddemonstrated byby GROSGROS && BESTBEST (1990).(1990). AnAn exchangeexchange programme,Programme, based based in in a a caravancaravan at at a a centralcentral meeting meeting point point for for addicts addicts near near the the MainMain Station, Station, was was running running well, well, butbut after after being being ordered ordered to to movemove by by the the locallocal authoritiesauthorities thethe number number of of drug drug addicts addirts making making use use of of the the programme Programme declineddeclined significantlysignificantly..

6161 The KOMMUNALE DROGENPOLlTIKlSociety DROGENPOLITIK/Society for Accepting DRUG COUNSEL­COUNSEL- LING in Bremen conducts a number of low-threshold projects with current intravenous drug consumers. InIn 1986 the public distribution/exchange of syringes was still observed by the police and sterile syringes were confiscated. In an action designed to draw attention to the supply bottleneck at the weekends (Schuller & St6verStöver 1989), syringes were distributed on Sundays. InIn 1987 a contact centre was opened, and the exchange of syringes was offered together with other servicesServices such asäs crisis counselling, first aid, accompaniment to doctors or hospital, social work, and legallegal counselling. Attention is drawn to the importanceimportance of responsible disposal of syringessyringes.. Since 1988 visitors receive sterile syringes only inin exchange for used ones. Every month somesame 10,00010, 000 syringes and 20,00020, 000 needles are exchangedexchanged.. Recently, "Hygiene Sets" are also includedincluded inin the exchange. The problem of used syringes isis central to the public discussion of syringe distributiondistribution.. Since syringes are still often confiscated by the police, or used asäs an indicator for the consumption of illegalillegal drugs, many drug consumers just throw the used syringes away, sometimes without putting the protective cap overaver the needleneedle.. Convenient corners for an injectioninjection near the point of purchase are also oftenoffen places where children play, such asäs playgrounds, parks or entrancesentrances.. Many children have hurt themselves on needles which has leadlead to a public outcryoutcry.. There is a risk of infection,infection, though probably lessless with HIV than with hepatitis-B. A number of receptacles for used syringes are placed around the quarters most frequented by the drug dealers and consumers. Handouts remind the drug consumers about a responsible way to deal with used syringes. Until recently, the highest number of syringes was exchanged inin Hamburg's contact centre "Drob Inn" - about 10,00010, 000 a day! Up to 800 visitors came intointo the centrecentre.. The "Drob Inn"Inn" then closed in March because police activities (checks in front of the entrance, raids on the scene near the Main Station, where the centre was located) severely hampered the work.

Syringe dispensers

Currently, somesame 60 syringe dispensers are integratedintegrated effectively inin syringe exchange programmes inin 35 towns and cities. A startStart was made in Bremen. The KOMMUNALE DROGENPOLlTIKIDROGENPOLITIK/ Society for Accepting DRUG COUNSELLING installed a dispenser for syringes and needles outside itsits centre inin June 19871987.. The dispensers are refilled almost every day and regularly maintained. SomeSame 5,0005, 000 syringes and 10,00010, 000 needles are extracted every month. The incomeincome serves to finance specific running costs (packing costs for the syringes, labourlabour costs, maintenance and repairs). None of the incomeincome isis kept asäs reserves, and any profit is used directly for the drug addicts. Once a week there isis a free breakfast spread at the contact centre, and visitors can also take free dressing materials if they have injuries. In Berlin in May 1988 a first dispenser was installedinstalled at an urban railway stationStation with the support of the district health authority and with the per-

62 mission of the transporttransport authorities.authorities. Since then the self-help group "Fixpunkt" has taken on thethe Operationoperation of 7 dispensers, which are used up to 10,10,000 000 times a month. The group is working to establish the acceptance of the police and the neighbourhood for these measures. In the largest German Land, North-Rhine Westphalia, the Ministry of Work, Health and Social Matters pledged support in 1988 for the Installationinstallation of syringe dispensers.dispensers. The original intention was to set up 25 dispensers in 12 towns, but since the Health Authorities and the AIDS Help were also willing to support the Programme,programme, in addition to the drug counselling centres, the number was doubled. The AIDS-Hilfe North-Rhine Westphalia received DM 120,120,000000 from public funds for the Installationinstallation of 50 dispensers.dispensers. At present samesome 40 dispensers are already in place, and a further 10 are planned.planned. SameSome 3,3,500500 disposable syringes and somesame 1,3501, 350 condoms are dis­dis- pensed every month. A scientific evaluation of the effect of syringe distri-distri­ bution models in reducing the rate of HIV/HBV infection has not been carried out. Bleach has not been includedinduded in the HIV prevention strategies in Germany, neither on a national level nor at the level of initiatives and self-help groups. Officially, bleach is not feltfeit to be a 100% safe method (including for surface disinfection in hospitals etc.).etc.). For the counselling institutions it was always the inferior alternative and it has therefore never been intensively propagated, for example by being distributed together with precise instructions about how to use disinfectant without risk. In the long-term all prevention strategies rely on the structural improve­improve- ment of the living conditions of those affected, and this in turn requires above all the decriminalization of the consumers. Recommendation at the IVthIVth European Discussion on Education inin Preven­Preven- tionofAIDSinthefieldofAIDSanddrugs;tion of AIDS in the field of AIDS and drugs; 1010-120rtober - 12 October 1990 inin Bad HonnefHonnef,, Germany: "We recognize that the main aim of drug prevention strategies inin all of Europe is to achieve drug abstinence, and that abstinence will reduce the transmission paths for HIVHIV.. We continue to support this strategy asäs a general goal. We also accept that drug addicts go through a number of different stages before they decide to take no more drugs. HIV education work and the appropriate prevention strategies must reach potential drug consumers and drug addicts inin all stages of their "drug career". These strategies must there­there- fore not obstruct abstinence and not stigmatize or alienate the drug addicts, which inin the final analysis would make thethe message of thisthis strategy ineffectiveineffective." ...

Specific recommendations: "Workers inin drug and AIDS counselling should act on thethe assumption that drug consumers, asäs any other grouping, are not a homogeneous groupgroup.. Therefore, programmes must be developed which not only taketake account of thethe need of women, young people and members of various ethnic groups, but which also reflect their cultural, social and linguisticlinguistic background background..." .. ... Health campaigns should be developed, inin co-operation with drug con­con- sumers, to encourage safe drug consumption and safe sex practices.

6363 HIV and drug education programmes and health campaigns should not stig-stig­ matize thethe drug consumers, or alienate them from their social environment, but should respertrespect theirtheir rights äsas citizens.citizens. HIV and drug education pro-pro­ grammes should reflect the needs of drug consumers and their HIV status.status.

These programmes should encourage and inform about .• living without drugs .• handling drugs äsas safely äsas possible .• safer sex .• ways of living, such äsas nutrition etc.

The existing legislation and sentencing should not conflict with the aims oftheof the strategy to improve health and health education and thus make it ineffective."ineffective. "

64 JES - HISTORY, DEMANDS AND FUTURE

Werner Hermann, JES coordinator

The continuing inadequacy of drug policies and a short history of JES

When drug users in the Federal Republic of Germany discuss their situation,Situation, they are in fullfüll accord on the following points: We need a lobby, i.e.i. e. an association which will combat marginalization and official policies of prosecution and which will fight for our civil and human rights asäs well asäs promoting and representing our interestsinterests and seeing that they are put into practice. Self-organization of addicts isis only possible if criminalization and prose­prose- cution of drug users ceases, if a minimum levellevel of existential security isis avail­avail- able and also if group consciousness of the common lotlot of those concerned does not lose its binding force. These preconditions have developed inin the lastlast few years mainly asäs a result of drug substitution treatment using Methadone for heroin addicts.addicts. This has taken place due to the threat of HIV, AIDS and deaths resulting from the state's drug policy named "war on drugs". (In this connection mention should be made of already existing initiativesinitiatives towards drug self-help projects.)projerts.) Solidarity of thought and actionartion startsStarts to arise asäs soon asäs we are able to free ourselves of being labelled criminals, asäs soon asäs the pressure inherentinherent inin the necessity to find somesame means of acquiring an adequate supply of drugs isis relaxed, asäs soon asäs drug users are permitted to get substitute drugs (such asäs Methadone or dihydrocodeine) and asäs soon asäs we - asäs people inin prison and asäs addicts in a crisis - are able to break out of our individualindividual isolationIsolation.. By this means links can be forged to movements directed towards realistic, more hu­hu- mane and acceptance-orientated approaches to drug work. Such approaches include those adopted by the Deutsche AIDS-Hilfe e.v.,e. V., locallocal AIDS-Hilfen, associations of progressive doctors and social scientists and professionalsProfessionals likelike the Deutsche Gesellschaft furfür Drogen- und Suchtmedizin (DGDS) and AKZEPT ee..V.V. and some government authoritiesauthorities..

65 JES means Junkies, Ex-Junkies and Substitutees

The organization JES emerged äsas a campaigningcampaigning group in the summer of 1989 from a seminar on the drugs and AIDS Situationsituation convened by the Deutsche AIDS-Hilfe (D.(DAHA. H..).). This seminar acted äsas a meeting place for people in many different situations including members of self-help groups, persons who had sufferedsuffered härmharm due to addiction or äsas a resultresult of official drug policies,policies, people with drug experience, addicts and former addicts, HIV positive drug users and substitutees on either codeine preparations (e.(e.g.g. Remedacen) or, more often,often, Methadone.Methadone. In view of the fact that the AIDS problem is becoming more and more serious and that drug policies are such that the main emphasis is placed not on health care but rather on police operations and legally repressive measures, the intention of the founding members of JES wwasas to respond with an authentic and competent lobby. The purpose of this interest group was to provide a means of articulation and representation for the demands of mem­mem- ber groups and also for needs and rights which are common to everyoneeveryone.. An important factor for the legitimacy of this coalition of interests is that JES should become not only a mouthpiece for ex-junkies or substitutees but should transcend sectional interests thus giving greater weight to the demands shared by all the persons concerned in the struggle against drug-related imim-­ poverishment.poverish ment. To this end,end, the approval and support of the D.AD.A..HH.. asäs well asäs the regional and local AIDS-Hilfe associations are very important because of their endeavours to establish solidarity amongst victvictimsims and inin particular solidarity which extends beyond sectional interestsinterests.. This isis needed primarily to ensure that the voice of the addicts concerned is heardheard.. The competence of those directly concerned has hitherto failed to be recognized. Without the DD..A.H.A. H. and the solidarity of other organizations and persons concerned, we are afraid that the launch and existence of our self-organization would be either ignoredignored or suffocatedsuffocated.. In spite of imprisonment, inin spite of therapy, inin spite of self-cure and inin spite of many thousands of deaths inin thethe course of the years, the number of intravenous (i.v(i.v..) drug users and thosethose addicted to opiates isis thought to have reached 100100,,000 to 150,000150, 000.. InIn addition to this there are thousands of ex­ex- junkies who in various ways bear thethe stamp of their pastpast.. The drug experience which isis our common feature, thethe factfact that there are almost 20,00020, 000 HIV-positives, the the threatening wave of sickness amongst persons dependent on drugs, the factfact thatthat bureaucrats seem to be ignorantignorant of our impoverishmentimpoverishment and our realreal social and health needs, theirtheir indifferenceindifference to­to- wards our civil rights and thethe rightsrights of minorities, and finallyfinally thethe National RauschgiftbekampfungsplanRauschgiftbekämpfungsplan (National(National Plan forfor Fighting Narcotics) which employs the same old unsuitable methods has brought home to us the the present deterioration of drug problems asäs reflectedreflected inin increasedincreased repression,repression, inin drugdrug-­ related trials, inin penal sentences and inin imprisonmentimprisonment and compulsory therapytherapy.. At the beginning of thethe 9090's's we experience drug policies asäs methods of circumventing aid for self-helpself-help,, asäs encouraging repressiverepressive conditions of con-

6666 trol,trol, äsas promoting socially marginalized existences and äsas providing reasons for refusing prescription of opiates on ideological grounds.grounds. In short we con-con ­ sider them toto be superficial cosmetic policies to cover up the fears of drug artact enforcement bureaucrats. The sacred principles of medical ethics and of public health policies which demand that people should receive treatment irrespective of their social Positionposition apparently do not apply to us. Although the life-prolonging and preventive effects of Methadone substitution for opiate users with AIDS have been proved in various studies both in Germany and elsewhere, prescription is in many ways restricted and Methadone is only available to about 2,2,000 or 3,3,000 IVDUs in the Federal Republic of Germany.Germany. SameSome of the effects of drug policies äsas we experience them are äsas follows:follows: Berufsverbot (which implies exclusionexclusion from all civil service professions by government ruling),ruling), prevention from integration in the labour market due to confiscation of drivingdriving licences and discrimination in our attempts to obtain Jobsjobs and flats. The peak of injustice inherent in drug policies is achieved where they are associated with discrimination of persons suffering from AIDS including: homelessness, imprisonment of persons who are terminally ill, promotion of dehumanizing conditions of polypolytoxicomaniatoxicomania leading to a life­life- and-death Situationsituation stemming from the necessity to acquire the required drugs, unwillingness to provide provisions to facilitate withdrawal and refusal to prescribe substitute drugs because the particular indications do not accord with the preconditions for such schemes or due to the fact that HIV tests have turned out to be negative.negative. This summary still provides an incomplete picture of national drug policies at the beginning of the 90's90's.. For eexample,xample, no mention is made of self-help neither in the National RauschgiftsbekampfungsplanRauschgiftsbekämpfungsplan nor is self-help assisted more than asäs an alibi inin regional concepts of drug-and AIDS help effortsefforts.. The National RauschgiftbekämpfungsplanRauschgiftbekampfungsplan creates hundreds of jobsJobs for drug counsellors and 314 Jobsjobs for the police and prosecution lawyerslawyers.. InIn contrast to this, mention should be made of the difficulties encountered to create just ONE Jobjob for JES coordination workwork.. So much for the balance between repression and emancipation in present-day drug policiespolicies..

JES and its role within thethe Deutsche AIDS-Hilfe e.V.e. V. CD.A.H(D. A. H.).)

The basis of JES are, of course, self-help groups at grassroot levellevel:: junkie leagues, groups of "substis" (substitutees),(substitutees), addicts and prison groups inin vari­vari- ousaus AIDS-Hilfe organizations as äs wellweil asäs ex-junkies associations, not toto mention Fixpunkt and Palette, twotwo groups of substis inin Berlin and Hamburg respectivelyrespectively who run day-centres with extensive facilities.facilities. More thanthan 40 locallocal JES groups and junkie leaguesleagues are active at thethe national and regionalregional level.level. We see ourselves asäs a coalition and mouthpiece for grassrootgrassroot, groups with the purpose of social emancipation of thethe drug ususinging minority and preventing AIDS and discrimination against people with HIV/AIDSHIV/AIDS.. We are ffinanciallyinancially

67 supported by the D.A.H.D. A. H. and embedded within the framework of the DAHD. A. H.. We are actively supported by the Department for Drugs and Prison Work. As a network, JES avoids the burdenbürden of organizational work associated with registered associationsassociations.. Every year a speakers' council isis voted inin which the speakers asäs the leading body of JES decide on activities. A scheme of educational and organizational workshops isis seen asäs the backbone of JES and provides the organization with permanent and tem­tem- porary features which cover the whole rangeränge of tasks inin public relations and inin improving working conditions inin our local groups, and in know-how of prevention and organizational matters. The network uses the training possibilities of the workshops and of exchange of locallocal or regional experienceexperience.. Below the national level at present three regionally oriented networks have developed. Gay men in the AIDS-Hilfe movement have an advantage inin experience and organizationorganization.. The AIDS prevention concept developed by the D.AD. A..HH.. for drug users asäs a target group isis the outcome of a precise analysis of the needs and of real commitment to our problemproblem.. But itit isis asäs yet unfinancedunfinanced.. This method isis however undoubtedly correctcorrert since help towards self-organization isis the standardStandard method of approach for the DD..A.HA. H.. Nevertheless, our experience (as(äs the second largestlargest group of persons concerned) inin various AIDS-Hilfe asso­asso- ciations and in the DD..AA..HH.. makes it necessary for us to touchtauch on the subject of equality which would still appear to be lackinglacking within the organizationorganization.. An extractextrart from the minutes of a meeting of members of the committee (06.01(06. 01..1990) will showshowhowweconceiveworkingtogether. how we conceive working together. This three-year-old statementStatement holds ststillill the truth, while our organization grew by success and defeat during the last three years. "All the participants are disconcerted and dissatisfied aboutaboutthe the inadequateinadequate representation in the DD..A.HA. H.. of former drug users, HIV positive persons and persons who are actually suffering from AIDSAIDS.. Attention must be given to the day-to-day work and to support of the self-help projectprojert asäs well asäs to provisionProvision of personnel and fundsfunds...... Our concentration was focused on the members' conferenceConference which took place on 1717.. and 1818.. February inin Wiesbaden and on the election of a committeecommittee...... The speakers should attempt to analyze the rela­rela- tionship between drug users and gays inin particular with respect to policies of cooperation within AAIDS-HilfeIDS-Hilfe associations, with respect to self-help projects, with respect to decision-making processes in connectconnectionion with AIDS-HAIDS-Hilfeilfe and with respect to distribution of funds and resourcesresources.. A clarification of this relation aimaiminging at equality must take place - and this must go beyond lip­lip- serviceService...... Support often fails to go beyond the verbal leveLlevel... .. We feel we occupy the role of simply being toleratedtolerated.. Practical support is seldom forthcomingforthcoming.. We are merely petitioners within the AIDS-Hilfe organizationsorganizations.. Admittedly we are impeded in our actions by longlang years of illegalityillegality and we are weakened inin our motivation towards self-determinationself-determination. . It isis difficult for us to bring ourselves into line with the norms of the societysociety.. Since gay men are also detached from the norms of heteros, we naturally ask ourselves whether every deviation from social norms is treated inin the same wayway.. Are we people who no-one isis interestedinterested inin apart from the police and drug therapists?

68 From our ranks,ranks, 15-20,15-20,000000 are infected and/or sick or will become sick if they cannot findfind suitable treatment.treatment . All drug injectors are in danger of becoming infected.infected. Prison or compulsory therapy is of no use to us whatsoever.whatsoever. We got support for our self-help movement from men and women with drug experience.experience. We organized ourselves äsas a self-help project within the AIDS-HilfeAIDS-Hilfe movement and became independent in many ways and in the course of our projects. Apart from this we are basically not different from other people.people. We would like to live in peace and whenever this is applicable we would like to die with decency and dignity.dignity. It is necessary forfor us to talk about a policy of coalition with the AIDS-Hilfe organization and with human rights organizations, with the networks and associationsassociations of other minorities, especially those affected by AIDS.AIDS. Even on aa European scale we need to develop mutual support and drug policy reforms in favour of legalization of illicit drugsdrugs,, and with the purpose of recognition of our minorityminority needs regarding the AIDS crisis and structural prevention of HIV/AIDS.HIV/AIDS. We need coalition partners to become more capable of counteracting repressive AIDS policies and repressive drug policies. We would thus like to discuss our basic needs äsas people who are directly concerned in the AIDS-Hilfe organizationorganization.. For this reason, we would like to make the following demands: Two members of JES on the committee of the DD..A.H.A. H. Representation at all levels of decision-making. Permanent positions and Jobsjobs for former drug users inin the Department for Drugs and Prison WorkWork.. A-fairA fair distribution ofoffunds funds in accordance with the principle ofofthe the degreedegreeto to which people are directly concerned and not just on the basis of numbers but rather asäs a group which continues to livelive for the most part iinn illegalityillegality and which should be approached primarily by the AIDS-Hilfe organorganizationization asäs concon-­ sisting of persons who are sick, who are HIV-positive or who are homeless or prisoners or unemployed and who are addicts. The question of a fair distribu­distribu- tion of funds also applies to incomincominging donationsdonations.. We demand generous treatment with respect to travel costs for our active representatives and we demand more support for Methadone and other substitution programmes. The AIDS-Hilfe should organize campaigns for ex­ex- change of needlesneedles,, for the release of prisoners who are HIV-positive and for prisoners who are sicksick.. ItIt should also develop and establish housing projects and Jobjob creation projects within thethe AIDS-Hilfe organizationorganization..." ... "

What is JES?

We are organizing ourselves, we are working on our concepts of AIDS prevention and self-help and we are attempting toto make ourselves known inin order to establish a firm foundationfoundation forfor a coalition of solidaritysolidarity.. As addicts and former addicts, we are proving thatthat we are very able toto work responsiblyresponsibly and continuously when we are not subject to pressure with respectrespect to our addic­addic- tiontion..

6969 Since the Startstart of the campaign four years ago, JES has run a series of seminarsSeminars within the context of the DD..A.HA. H.. These have been directed at the following subjects:

• AIDS and impoverishment inin the drug scene and inin drug policy • Safer use and safer sex for drug users • Self-help in the drug area • Substitution treatment • AIDS in prison • The situationSituation of the drug using population inin Europe • Solidarity between people with HIV and AIDS • Unemployment and homelessnesshomelessness:: Where isis help? • Anger and grief about discrimination • Reconstruction of sexuality • Harm reduction and survival in drug scenes

In the time between these seminars,Seminars, a regularregulär exchange of experience takes place in the speakers' committee. They report onan the regional activitiesartivities of self-help groups, they coordinate them and transform them intointo nationwide campaigs.

What does JES demand?

On the basis of the shared experience of everyday criminalization, of social exclusion and stigmatization on account of their addiction-orientated beha­beha- viour and of the common experience of dependence, JES isis striving for:

1. Establishment of solidarity on the basis of self-help 22.. Legalization and equality with other dependent groups (alcoholics, pill users) 3. Greater social acceptance of the lifestylelifestyle of drug users and ex-junkiesex-junkies.. 4. A cultural, legal, socio-medical and, in the lastlast analysis, political alternative to society's way of dealing with the needs and the problems of drug con­con- sumers, substitutees and ex-junkies. 5. Realization and recognition of the competence of persons directly con­con- cerned on the drug scene by drug and health politicianspoliticians..

The organizational method of JES follows the principle of voluntary parti­parti- cipationcipation.. Anonymity and solidarity are maintained inin the interestinterest of pluralistic representation of interests. In decision-making processes, our aim isis to strive for consensus of values and interestsinterests when controversial positions and de­de- mands are discussed. In practice this means that inin spite of differences inin the way values are con­con- ceived and the way we see ourselves inin regional self-help groups, it is essential that we join together autonomously and inin solidarity to assert our political interests.

70 DemandsDemands whichwhich havehave beenbeen workedworked outout byby JESJES onon thisthis basisbasis andand whichwhich extendextend beyondbeyond justjust sectionalsectional interestsinterests followfollow underunder thethe headingheading "reduction"reduction ofof drugdrug relatedrelated härm":harm":

1.1. DecriminalizationDecriminalization ofof drugsdrugs whichwhich havehave hithertohitherto beenbeen illegalillegal 2.2. AbolitionAbolition ofof thethe BtmG (Illegal(Illegal Drugs Art)Act) äsas aa routineroutine oror specialspecial lawlaw againstagainst illegalillegal drugdrug users.users. 3.3. SocialSocial andand culturalcultural normalizationnormalization inin dealingdealing withwith problemsproblems ofof survivalsurvival andand thethe needsneeds ofof drugdrug users andand ex-junkies.ex-junkies. 4.4. Revision ofof past methods of combatting drugs. TheseThese operate äsas politically designeddesigned socialsocial andand health care programmes which inin factfact only leadlead toto impoverishment.impoverishment. For individualindividual drug consumers and ex-junkies theythey are more liableliable toto resultresult inin sickness than than health. Instead, a drug policy under thethe heading "härm"harm reductionreduction and pro survival acting" hastohas to be established and consistently applied. 5. Political support for and recognition of self-help organizations at all levels of use, i.i.e.e. during the early phase of the user becoming addicted and during withdrawal. 6. Recognition that drug users and persons with drug experience have basic rights including recreation for prisoners, access to drug assistance organi-organi­ zations and psychiatric and medical care. 7. Material, political and conceptual support of self-help projects in the drug scene with public funds, so-called no or lowlow threshold projectprojert i.e.i. e. protected places for hygienic injectioninjection and medical first aidaid.. 8. Recognition of the necessity for and funding of health-oriented preventive drugs asäs wellweil asäs AIDS education in and by self-help organizationsorganizations.. There should be guarantees for projects organized by drug users, ex-junkies and substitutees to ensure provision Provision of health care during drug dependency and drug usage phases. 9. Political and social measures for provision of freefree and protectedproterted premisespremises for people who forfor longlang years have suffered prosecution and criminali­criminali- zation inin thethe drug scene.scene. 10.RecognitionlO. Recognition of thethe dignity of drug users,users, ex-junkiesex-Junkies andand substituteessubstitutees andand respectrespect forfor theirtheir problemsproblems asäs well weil asäs aid aid towardstowards solidarity.solidarity.

OurOur goals and and demands demands areare most most urgent urgent where where the the crisis crisis is is most most acute: acute: on on the the drugdrug scene,scene, inin hospitalshospitals and and prisons. prisons. TheThe riskrisk ofof HIVHIV infection infection isis highest highest wherewhere thethe burdenbürden placedplaced onon addictsaddicts andand thethe sicksick isis heaviestheaviest..

WeWe demand: demand:

NoNo obstacles obstacles to to AIDS AID5 prevention prevention programmes, programmes, provision provision of of clean clean needles needles also also inin prisons,prisons, prescriptionprescription of of substitution substitution drugs drugs for for those those dependent dependent on on heroin. heroin. WeWe demand demand substitution substitution treatment treatment without without "ifs "ifs and and buts" buts".. This This applies applies to to the the manymany personspersons onon thethe scenescene whowho areare waitingwaiting forfor PolamidonPolamidon (Methadone)(Methadone) treatmenttreatment butbut who who have have the the "wrong""wrong" indications,indications, forfor persons persons whose whose health health is is

7171 seriously endangered, forfor personspersons who are not infected,inferted, forfor thosethose harassed through the pressure of thethe need toto acquire an adequate supply of drugs and for persons facing impendingimpending imprisonmentimprisonment.. Our demand isis not for long-termlong-term experiments on people receivingreceiving substitu­substitu- tion treatment inin special programmes but ratherrather forfor implementationimplementation throughthrough the usual health care channels with theirtheir capacity for easy distribution of substitution drugsdrugs.. The ruthless enforcement of prison sentences against drug-dependent or HIV-infected people must be stoppedstopped.. We demand early release! We demand that special AIDS departments inin hospitals and all wards which accept sick intravenousintravenous drug users should examine theirtheir special regulationsregulations and should, where necessary, abolish themthem.. It isis not possible to build up mutual confidence where therethere are additional withdrawal complications or particularly inappropriate conditions resulting fromfrom unsatisfactory provisions for addicts. We demand thatthat mistrust of drug users be reducedreduced inin hospitalshospitals.. The climate must be improvedimproved.. Drug addicts with AIDS who require continual attention should be provided with accommodation to livelive together inin special care projectsprojects.. We share with them the horror of premature removal to homes or closed institutionsinstitutions.. Where alterations are arrived at or where structural shortcomings render positive developments invalid, credibility will be generated because our demands will appear plausible. We intend to realize these immediateimmediate demands through working groups, projects, campaigns and demonstrating our solidarity. These very concrete and urgent demands asäs well asäs humane and well thought-out AIDS policies for sick and infected drug users overlap time and again with the demand for a more humane, low-threshold and acceptance-oriented approach to drug policies. At these points partial improvements can be achieved only through structural alterations.alterations. At these intersections, solidarity will be possible because of the pressing need for it. Fields of overlap include AIDS prevention and substitution pro­pro- grammes, decriminalization, assistance with self-help projects and release fromjail.from jail.

Prospects for the future

For the self-help movement, drug substitution treatment for persons de-de­ pendent on heroin is the key to further progress, because there are simply not enough people toto work with us.us. We must forge alliances inside and outside of the AIDS-Hilfe organizations.organizations. The precondition for this is that we first establish contacts among ourselves and organize ourselves.ourselves. A growing number of drug consumers who are acting responsibly will only joinjoin us if they are provided with the most elementary human rights e.e.g.g. the right of a secure living which can only be established by decriminalization of drug consumption.

72 JESJES will only be able toto achieve thisthis inin combination with acceptance-acceptance­ oriented drug policies and by becoming thethe mouthpiece forfor junkies,junkies, ex-Junkiesex-junkies and substitutees.substitutees. We need thethe support of the D.D.A.A.HH.. and other democratic organizations toto achieve stage by stage victories inin thethe struggle toto gain our socialsocial rightsrights and toto obtain structural improvements.improvements. In thethe AIDS prevention work carried out by JES we will apply our concepts of public education. Funding, media and their distribution will be organized in thethe D.D.A.A.HH.. Through this we will be able toto present ourselves to thethe informed public and toto become a partner inside and outside the AIDS-Hilfe.AIDS-Hilfe. In addition toto initiating furtherfurther self-help groups, JES intends to build up an image based on these concepts of publicity and public Information.information. To widen the European and international scope of our work we gather information about härmharm reduction programmes and practices outside of Germany and establish links with foreign self-help groups.groups. This way we want to organize further international campaigns.campaigns. Particular attention should be paid to the international aspects of the War on Drugs. The co-operationco-operation with European self-help and non-governmental AIDS groups should amplify the scope of the drug users self-help and combine its efforts with international expertise and supranational institutions like EUROCASO and WHO.WHO. The Berlin Declaration of E.E.I.G.D.UI.G. D. U.. (European Interest Group of Drug Users) - ratified at December 1, 1991 - shows the common intention and direction of the drug users self-help movement towards acceptance and equality of the ddrugrug using minority. The success of JES will above all depend on the persuasive power of itsits commitmentcommitment.. In spite of the manifold reasons for grief and inin spite of sickness and impoverishment, self-help isis oriented towards life.life.

Junkies, Ex-Junkies, Substitutees (JES)(JES)

JES isis an association of junkies,junkies, ex-junkies and substitutees who wish to bring the skills and experience of thosethose directly concerned to thethe forefore and who demand recognition of theirtheir association by thethe authorities responsibleresponsible forfor official drug and health policiespolicies.. JESJES believes thatthat drug users, likelike everybody else,eise, have a rightright toto human dignitydignity.. They do not need toto earn thisthis byby abstinence and conformconformism. ism. InIn addition they they have the the rightright to to health care and humane livingliving conditionsconditions.. JES wants improvementsimprovements inin thethe legal,legal, health and social situationSituation of drug usersusers and ex-junkies inin thethe FederalFederal Republic of Germany. JESJES wants decriminalization ofof peoplepeople who taketake drugs.drugs. JESJES wants access forfor drug usersusers toto informationinformation onon health risksrisks associatedassociated with theirtheir drug consumption.consumption. JESJES wants both drug usersusers andand formerformer usersusers toto bebe permittedpermitted toto choosechoose theirtheir ownown lifestylelifestyle.. JESJES wants recognitionrecognition ofof thethe rightright toto self-determinationself-determination ofof drugdrug consumersconsumers andand ex-junkiesex-junkies and their their rightright to to self-organization.self-organization. JESJES wants wants healthhealth carecare forfor drugdrug usersusers.. JESJES wants wants thethe risksrisks ofof drugdrug useuse toto bebe reducedreduced.. SAFERSAFERUSE! USE!

7373 JES wants improvements inin help for drug users who want to stop taking drugsdrugs.. JES wants Polamidon (Methadone) substitution treatment to be freely available for heroin addicts. This is at present only available to two or three thousand persons in the Federal Republic of Germany with an estimated total of 150,000150, 000 intravenous drug users. JES declares its solidarity with all persons with HIV/AIDS and needs their solidarity in return. JES has its own point of viewview.. "I"l am not prepared to take part inin the legalization debate. People assume we are biased and hardly believe anything we say. JES must first become activeactive,, if it isis to be asked to take part inin helping to establish legality by self-help." JES demands solidarity for drug users who suffer from political repression and from impoverishment. JES demands to stop tabooing drug addiction and drug use inin society. JES wants social integrationIntegration and help from society without any preconditionspreconditions. . JES demands relief from needs. JES wants to be a negotiating partner for dependent and formerly dependent drug users. We are committed and confident but we do not overrate ourselves. JES is still in its infancy. JES wants the assistance of the Deutsche AIDS-Hilfe to reach both the drug users and society. JES wants drug users and ex-junkies to play a more important role in the Deutsche AIDS-HilfeAIDS-Hilfe.. Many of us are infectedinfected and many of us are already sicksick.. InIn the end, if nothing changes, all of our dead will fall into oblivionoblivion.. JES is a political initiative and a network of drug consumers aiming at soli­soli- darity and self-helpself-help.. JES isis an umbrella organization for various groups and activities and intends to act asäs their common mouthpiece.

Contact with JfSJES is possible through Deutsche AIDS-Hilfe, DieffenbachstrDieffenbachstr.. 33,33, 10007000 Berlin 61 (new postcode from JulyJuly,, 1: 10967 Berlin).

74 THERAPYTHERAPY STUDIES, ETHICS AND DESIGN -- INVOLVINGINVOLVING DIRECTLYAFFECTEDDIRECTLY AFFECTED PEOPLE INCLINICALTRIALSIN CLINICAL TRIALS

Matthias Wienold, Dr. med., head of dept. "Medicine and Health Policy", Deutsche AIDS-Hilfe

Introduction

In view of the power of the therapists, based on their knowledge of the possibilities of therapy, one of the fundamental goals of the medical tradition has been to limit the freedom of therapy by oaths, membership of schools, and the establishment of professionalProfessional standardsStandards so that it loses the negative aspects of its power. The implementation of the various types of therapy, e.g.e. g. drugs, surgery, or other methods such asäs psycho-therapy is subject only to the ethical principles governing the physician's actions, and isis seen these days asäs requiring the approval of the patientpatient.. As a consequence of the Thalidomide scandal, legislationlegislation was introducedintroduced inin most countries governing thethe introductionintroduction of new drugs. Medicinal trialstrials of new therapies must be carried out under state control, reflecting asäs a me­me- chanism of bureaucratic structures thethe caution of the controlling institution.institution. People with HIV and AIDS (and(and others suffering fromfrom chronic and life­life- threatening diseases) see thesethese protective measures asäs constraints on theirtheir freefree choice of medical treatment. No account isis takentaken of thethe urgency and size of the problem of AIDS, inin particular inin view of thethe rapidrapid development of thethe HIV-infection inin individualindividual casescases.. The stages of multiplication of HIV inin a typicaltypical infectedinfected cellcell are almost com­com- pletely understood, and can be followedfollowed inin vitro (in(in a testtest tube)tube).. Sequential and structural analyses have been made of the the functionalfunctional regionsregions of importantimportant enzymes (reverse(reverse transcriptasetranscriptase andand protease)protease) and genes (tat),(tat), which make itit possible toto develop ideasideas of thethe spatial configuration necessarynecessary for for a blockingblocking substancesubstance.. The systematicsystematic researchresearch forfor substancessubstances which are effective againstagainst HIV, using screening proceduresprocedures and and structural structural designdesign can can leadlead to to aa numbernumber of of substances whose activity againstagainst HIVHIV can can bebe demonstrateddemonstrated inin vitro. TestsTests with animals (mice,(mice, macaques, chimpanzees)chimpanzees) cancan givegive anan ideaidea ofof the the systemicsystemic effectseffects of thethe substancessubstances.. InIn additionaddition toto thesethese experiments,experiments, toxicitytoxicity teststests areare alsoalso carriedcarried out with various dosage dosage levels. levels. TheThe two two criteriacriteria of of efficacyefficacy and and toxicity toxicity determine whether whether a a drugdrug isis ready ready to to bebe subjected subjected to to aa therapytherapy study. study. VariousVarious preparations are are necessary necessary before before an an experimental experimental drug drug can can be be given given toto humanshumans:: a studystudy design;design; the the selectionselection ofof aa sitesite forfor thethe study;study; andand thethe avail-avail-

7575 ability of a suitable amount of the drug inin a form inin which it can be appliedapplied.. InIn Germany a clinical study does not require the approval of a control body or an ethical commissioncommission. . As a rule, however, an ethical commission isis consulted inin accordance with the Helsinki DeclarationDeclaration.. Clinical testing of drugs isis divdividedided intointo four stages, investigating the tolerance (desirable effects inin relation to undesir­undesir- able ones), dosage and the efficacyefficacy.. The point in time inin the four phases at which a drug can be cleared for use depends not leastleast on the level of proof provided by the results of the trial. In the regularregulär course of testing and approval of a drug there are therefore logistic, technical and factual hurdles which must be clearedcleared..

Problems of therapy research

Logistical problems can arise when those running a clinicaldinical trial operate inin an area of research which isis not familiarfamiliär to them. InadequateInadequate informationInformation can lead to misjudgments concerning the study group, the wrong choice of loca­loca- tion for the trial, failure to take intointo account competing developments inin ther­ther- apy, or miscalculations of the effort involved.involved. Technical problems arise from the inadequate galenicitygalenidty of a substance, the non-standardization of a sub­sub- stance, the choice of an unrepresentative study group, or even the inadequateinadequate reproducibility of a procedureprocedure.. Profit orientation isis also a questionable "normal" state when it leadsleads to a restriction of the availability of the therapy procedureprocedure.. The hurdles are particularly high when patients are excluded be­be- cause of their sexsex,, lifestyle and age. The demands placed by people with HIV and AIDS on the clinical research for therapies for their condition are inin part due to the fact that nothing isis asäs yet available, so that individual hopes are directed towards progressprogress.. No lessless important, however, is the understandable anger when bureaucratic and seemingly pedantic processes hinder the release of drugs, or when the sorts of mistakes mentioned above leadlead to funds being wasted which could otherwise be used for promising researchresearch.. The cooperative design and implementationimplementation of clinical studies can simplify the research workwork.. At the same time the integration of the interestsinterests of a study population leads to a greater practical relevance, which inin turn helps to pro­pro- ject the image of humane research.

Please be patient - community involvementinvolvement inin clinical studies

Seven years ago, when Il began to work within the framework of AIDS-Hilfe, medical science had little to offer inin the way of therapy for the treatment of AIDS. SomeSame progress had been made inin the diagnosis of individualindividual oppor­oppor- tunistic infertions,infections, so that therapy could begin earlier, but inin 1986 there was no talk of prophylaxis or antiretroviral therapytherapy.. Although the inadequacy of the therapy was demonstrated clearly enough, the doctors and scientists nevertheless succeeded inin dominating the discussion

76 about AIDS. Their approach toto thethe problem of AIDS was often marked by damage limitationlimitation and breaking chains of infectioninfection (isolation, behaviouristic methods of condomization, banning and avoiding) or by exaggeration (gen-(gen­ erating hysteria, prophesying doom). The only really realistic approaches toto dealing with AIDS which addressed thethe actual Situationsituation of thethe people with HIV and AIDS were introducedintroduced to Germany from the USA. Whereas inin Germany HIV research concentrated on thethe virus (and samesome excellent work was done on the virus morphology), the clinical research merely plodded along. It isis truly shameful to see the time which medical researchers and clinicians spent arguing about the prevention and epidemiology of HIV, while at the same timetime proving unable to share information to create even aa remotely accurate picture of the numbers of patients they were treating.treating. But it is precisely this open exchange of experience which can provide the basis for planning jointjoint strategies. Thus the majority of centres and Serviceservice institutions did not have the slightest chance of discussing on a sound basis the experience they gathered. A profound impression remains, for example, of the compe-compe­ tition for the most graphic colour photographs with which to depict both the experience in handling AIDS and its terrible reality. As a consequence, treatment was completely individualized without establishing Standards;standards; medical treatment was not subject to discussion either by patients or by colleagues. People with HIV and AIDS were reinforced in their role äsas virtims,victims, and the formation of "schools" of treatment was encouragedencouraged.. Notorious examples are the argument about the so-called "Frankfurt Defini­Defini- tion", and more recently the incredibleincredible variety of opinions about the primary prophylaxis of toxoplasmosis. The predominant belief was that if only a centre was large enough, it would be able to meet all expectations for the develop­develop- ment of a drug. The number of patients inin the clinical studies, however, were so small that any critical discussion of the results presented was out of the question. In 1988, this situationSituation was suddenly disrupted by the the announcement of a drug which was supposed toto offer a considerably improvedimproved prognosis for AIDS. Belief was strong, but there was littlelittle actualartual experience. The resultresult was disagreement, leftleft and rightright.. InsteadInstead of seriously addressing thethe questions of thethe patients and self-help groups, the only answer was "You will justjust have toto believe me!" This attitude only began toto change inin 1989,1989, when thethe publication of thethe resultsresults onan prophylaxis forfor pneumocystes carinii pneumonia (PcP) (PcP) demonstrated thatthat thethe largelarge university apparatuses at an American university did not ne­ne- cessarily produce the the better resultsresults.. A group of practising physicians had asked themselvesthemselves ifif a common approachapproach might help toto solve common problems. The most pressing problem forfor treatmenttreatment was thethe PcP, and so itit was decideddecided toto develop a prophylactic strategystrategy.. The successsuccess of thisthis traintrain of thoughtthought demon­demon- stratesstrates how much thethe pragmatismpragmatism ofof thethe approachapproach cancan affectaffect thethe relevancerelevance ofof thethe results.results. Under American liabilityliability legislationlegislation thethe doctorsdoctors carryingcarrying outout thisthis study were under much greatergreater pressurepressure toto keepkeep theirtheir patientspatients fullyfully informedinformed thanthan scientistsscientists would bebe.. ThisThis pressurepressure isis probablyprobably thethe reasonreason why,why, forfor thethe firstfirst time,time, theythey attemptedattempted toto integrateintegrate thethe peoplepeople withwith HIVHIV andand AIDSAIDS inin theirtheir studiesstudies rightright fromfrom thethe beginning,beginning, inin whatwhat theythey referredreferred toto asäs 'community­'community- basedbased research'.research'.

7777 What developments had there been meanwhile on the part of the people with HIVHIVandAIDS? and AIDS? The discrimination showed no signs of endingending.. After a wave of hysteria had spread through Germany, things had become a littlelittle calmercalmer.. Many of those involved assumed that sooner or laterlater the sickness and death would give rise to compassion and sympathysympathy.. As if the threat of death were not enoughenough,, inin 1987 the Bavarian Government took a step which was to cause lastinglasting damage for people with HIV and AIDS, and also those who placed themselves at riskrisk.. State interventionintervention,, carrying the message that those infectedinfected with HIVH IV were bad, dangerous and should be excludedexcluded,, put an abrupt end to dealing openly with the HIV infectioninfection.. It placed such barriers inin the way of accepting one's infection that it is hardly surprising that people with HIV and AIDS sought comfort, rather than actively confronting their situation.Situation. The reaction of the less "Bavarian" population also tended to confirm the role asäs victim, rather than helphelpinging to dismantle it - however emancipated they may have feltfeit.. The activities of the Bavarian Herr Gauweiler therefore had much the same effects asäs those of Peter Duesberg (who argues that HIV isis not the cause of AIDS)AIDS),, inin that in the place of reality an illusionIllusion isis projected which promises safety and offers leadership for those not directly affected. It must have been because they feltfeit so powerless that inin 1989 the executive committee of the German AIDS-Hilfe (the majority of whom were themselves HIV-positive) decided to appoint a medical scientist, although the consensus was that the real confrontation with AIDS and HIV was a social and psychological one. This professionalization was to help to gain entry to the ivory towers of medical science. And in fact it did turn out that a gay doctor, with only the conviction of being at the right place at the time, gained influenceinfluence and a hearing. But this is not enough for meme.. If the involvement of those directly affected really leads not only to the reality becoming more visible but also helps to avoid wasting research funds, then this role asäs proxy cannot and should not be continued. In Germany the awareness of the size and urgency of the problem AIDS is lacking, with the exception of a few activists. "Please be patient" isis the standardStandard answer to the request for effective therapeutic approaches. "Please be patientpatient"" - a formulation which bears witness to the distance - professionalProfessional or otherwise - between the clinical research and the needs of the people affected in the widest sense by HIV and AIDSAIDS.. Examples of this attitude, which prevents a significant cooperation of people with HIV and AIDS inin the research which affects them, or at leastleast their involvement, are:

11.. The Deutsche AIDS Gesellschaft, whose chairman isis Professor Dietrich ofofthe the Bernhard Nocht Institute, Hamburg, refused the Deutsche AIDS-Hilfe (D(D..A.H.)A. H. ) fullfüll membership on the grounds that itit was not a scientific society. 22.. The Federal Ministry of Research and Technology refused the D.A.HD.A. H.. the right to attend asäs speaking guest the meetings of the Research Council at which the distribution of funds for AIDS research was discusseddiscussed.. 33.. The Drugs Commission of the Federal Office of Health has refused even to consider allowing a representative of those directly affected to be present at the discussion of applications for new AIDS-related drugs.

78 4.4. The AIDS CentreCentre of thethe Federal Office of Health continuescontinues toto operate without any formform of advisory group made up of people with HIV and AIDS.AIDS. 5. The German Association of Medical Practitioners Caring forfor the HIV-lnfectedHIV-Infected isis primarily concerned with theirtheir own further training.training. There is no initiativeinitiative toto increaseincrease thethe involvementinvolvement of thosethose directly affected,affected, or any open dialogue with doctors inin theirtheir own ranks with HIV or AIDS. 6. Pharmaceutical companies use the D.D.A.H.A. H. inin their advertising to increaseincrease the acceptance of dubious therapy trials.trials. The label "discussed with D.DAHA. H.." (or ACT UP etc.etc.)) really means little, since important Informationinformation is often withheld inin thethe discussions.discussions. It is the exception rather than the rule when thosethose directly affertedaffected are seriously consulted.consulted. 7.7. The Clinical Association AIDS Germany restricts füllfull membership to clinicians or doctors involved in treatment. Although the D.D.A.H.A. H. has the status of aa clinical centre in the meetings of delegates, it must be represented by aa doctor.doctor.

In view of this experience the question is no longerlanger "Why should those directly affected become involved in clinical research", but rather "Why are researchers, scientific bureaucrats, drugs manufacturers and doctors so afraid of normal, active patients?"

Models of involvement

Since German clinical research has proceeded almost totally without the inte­inte- gration of people with HIV and AIDS, despite the positive internationalinternational expe­expe- rience, somesame models of involvementinvolvement are presented herehere::

1. Planning consultation

InIn the planning phase itit isis importantimportant to registerregister the the subjective perception of a studystudy,, and to estimate itsits relevance.relevance. At thisthis stagestage of planning an adviser will bebe able toto introduceintroduce thethe interestsinterests of thosethose with HIV and AIDS, particularly inin thethe followingfollowing areasareas::

• What hopes are attached to to thethe study?study? • Who wants toto taketake partpart inin thethe study?study? • What groups should bebe particularlyparticularly involved?involved? • Can thethe languagelanguage usedused bebe understoodunderstood byby thethe patients?patients? • Are therethere irrationalirrational exclusionexclusion criteria?criteria? • IsIs thethe goal of thethe studystudy acceptable?acceptable? • Will supportsupport be forthcomingforthcoming from from thosethose directly directly affected? affected?

IdeallyIdeally thethe adviser would bebe anan HIV-positiveHIV-positive staff staff membermember ofof thethe institutioninstitution planningplanning thethe study.study. ThisThis seemsseems realisticrealistic inin thethe largerlarger institutionsinstitutions (e.g.(e. g. FederalFederal

7979 Ministry of Research and Technology, Federal Ministry of Health, AIDS Centre of the Federal Office of Health, the Centre for Health Education, Bundeswehr).Bundeswehr). A second level of consultation would compensate for the selective perception oftheadviser.of the adviser.

2. Consultancy Seminarsseminars

A relatively cost-effective approach for smaller institutions and organizations is to establish an advisory group consisting of people with HIV and AIDS. Ex-Ex­ perience has shown that using suitable training methods an interested lay-per-lay-per­ sanson can become an adviser during only a weekend.weekend. Such groups can consider the following points:points:

• Acceptancy • Interest • Accessibility • Structural requirements to carry out the study • Communication • Quality of life

3. Inter-professional consulting group

In addition to the Initiatorsinitiators of a studystudy,, who have reached agreement about the aims of their study äsas developed inin the initialinitial consultations, experts should also provide an additional assessment of how realistic a study hypothesis isis.. After completion of the planning stage, but before the study isis set up, a consultancy group is therefore regularly called togethertogether.. Wide-ranging and intensive dis­dis- cussions are necessary at this stage of the preparations. ImportantImportant aspects of the implementation of the study can only be illuminatedilluminated by the test persons themselves. The planners must take the step from the prospective study population in their heads to the realityreality.. InIn contrast to the initialinitial seminars, the preparations made here are directly related to the actual implementationimplementation of the studystudy.. The professionalProfessional advisory group can prepare a catalogue of rights ofcrf the study participantsparticipants.. In addition to the participation structure, such a catalogue can outline the participantsparticipants'' rightright to quit thethe study, and the examinations which are necessarynecessary..

4. InvolvingInvotving community representativesrepresentatives

In the course of a study rumoursrumours can drastically reducereduce the the levellevel of participationpartidpation.. The only remedy for this isis unreserved openness and the the creation of informationInformation structures which operate outside thethe doctor-patient relationshiprelationship.. Individual test persons with contact to others takingtaking part shall be consulted systematically on a confidential basisbasis.. A circular produced by thethe community representativerepresentative can be useful.

8080 The community representatives should be integrated in on-going consult-consult­ ations in thethe course of the study.study. Alarming reports, or even the termination of the study should definitely be prepared for in consultations.consultations.

5. Focus groups

One way of registering the changing moods in the test population, or of testing the level of acceptancy, is to consult a selected group of test parti-parti­ cipants at regulärregular intervals in a group meeting.

6. Study parliament

Just äsas in a normal parliament, a study parliament can provide a strurturestructure in which the scientific advisers, medical staff and sponsorsSponsors of a study can discuss relevant topics with the test persons. A study parliament can meet at regularregulär intervals (every 3 months) from the Startstart oftheof the study.study. It could be comprised in equal parts of basic scientists, clini­clini- cians, and test persons. In addition to the open discussion this can help to form a community supporting the studystudy.. This form of integration of those involved is recommended in particular for innovative studies, or for those which are long-term or which investigate psycho-social factorsfactors.. An interesting glimpse of the effects of this involvement is provided by the regularregulär evening meeting held for the past 1 1/2 years at the University Clinic Frankfurt/Main for the participants inin their study of the new nucleoside analogon L-661. In the course of the study regularregulär and open discussions of the results between the testers and the tested have not only helped individuals to learn about the contents of the study, but have also had asäs a consequence a a fantastically high level of compliance on the part of the test persons.

77.. Involving relevant media

When it comes to making public the results of a study, informationinformation deficits often arise in the network of AIDS advice centres. Just asäs stock markets are informed inin advance when publications may effect the markets, asäs a bar to insiderinsider trading, so the results of studies should be recognized to be potentially relevant to counselling activities. Confidential prior informationinformation for advice centres and people with a multiplier functionfunction can help to avoid confusion. ItIt isis extremely counter-productive to relyrely on thethe laylay press for thethe publication of preliminary results, and can damage thethe imageimage of thethe study organizers. InIn addition to structures of consultation and informationInformation thethe involvementinvolvement of those directly affected can be improvedimproved by thethe followingfollowing measuresmeasures::

11.. Child care 22.. (Drug) substitution during thethe study 33.. Free provision of contraceptive pills during thethe study

8181 4.4. Free Provisionprovision of condoms 5.5. Repayment of travel expensesexpenses 6.6. Report of individualindividual results before the official end of the study (after breaking thethe code in double-blind placebo trials) 7.7. Guarantee of further free treatment with the trial therapy after the end of the study until the treatment receives approval (unless there are serious negative effects) 8.8. Information prior to publication.publication.

8282 CARING FOR OUT-PATIENTS WITH AIDS

Beate Steven, care officer.officer, Deutsche AIDS-Hilfe

The initial Situationsituation

1. The Situationsituation of the health systemSystem in Germany

The social insurance systemSystem in Germany, which includes health insurance, is seen äsas a model in Europe and internationallyinternationally.. Nevertheless, the results of this "all­"all- round insurance" are not convincingconvincing.. The financingtinancing of health care in the Federal Republic of Germany isis facing bankruptcy, while at the same time providing aa relatively poor quality of care and nursingnursing.. There is a growing discrepancy be­be- tween the considerable funds needed for the highly specialized medical-tech­medical-tech- nical servicesServices to restore and ensure health on the one hand, and their actual success on the other handhand.. The latterlatter should be reflected,reflerted, for example, at the levels of participation inin regularregulär preventative medicine programmes (such asäs screening for cancer), inin the reductionreduction inin thethe number of working days lostlost because of sickness, and inin shorter stays inin hospital -- but ththisis isis not the casecase.. Many analyses describe German health care asäs being disconnected fromfrom thethe interestsinterests of the population, having followedfollowed for somesame timetime thethe interestsinterests of thethe drugs industryindustry and professionalProfessional bodiesbodies.. The cost-intensive and highly differ­differ- entiated advanced medicine, apparently available to everyone, createscreates the the im­im- pression of appropriate care but obstructs thethe vision when itit comescomes toto judgingjudging itsits quality and itsits limitations.limitations. However, with thethe growing clientele which no longerlanger requiresrequires intensiveintensive medical treatment,treatment, but ratherrather intensiveintensive carecare and nursing,nursing, thethe focusfocus of publicpublic interestinterest isis shifting. People with cancer,cancer, AIDS, multiplemultiple sclerosis,sclerosis, Alzheimer'SAlzheimer's disease or mental illness,illness, thethe chronically andand terminallyterminally ill,ill, asäs wellweil asäs old or disabled people and addictsaddicts allall emphasizeemphasize thethe deficits ofof thethe healthhealth carecare andand nursingnursing system.System.

There isis a shortageshortage of: •. acceptable,acceptable, professionalProfessional diagnostics,diagnostics, therapytherapy andand carecare onon aa locallocal basisbasis •. an adequate and integrativeintegrative care care network network •. healthhealth counselling,counselling, educationeducation •. supportSupport and and monitoring monitoring ofof laylay care care

8383 • support for self-help resources outside the health servicesServices • preparedness to take account of criteria such asäs "quality of life"life" and "dignity", in particular when dealing with and caring for the seriously and terminally ill, and when assessing existing serviceService structures, • the integration across professions of care approaches, • involvement of those directly affected in policy and planning matters

2. The care situationSituation in Germany

The deficits in the health systemSystem also affect the provisionProvision of care and nursing for the sick, asäs reflected inin public discussions of excess bed capacity, apparatus medicine, care emergency etc. HoweverHowever,, these rather superficial consider­consider- ations of care leave the real problems untouched. Care and nursing in Germany isis inin a deep crisiscrisis:: One sign of this isis the lacklack of young trainees, the high sickness levels,levels, early retirements, and the poor quality of care in international comparisoncomparison.. On the other hand, the wide variety of interpretations placed on care and nursing ("Pflege" is a 'service'Service of love', 'everyone can care' etc.)etc. ) only serve to emphasize the lacklack of a clear self-image and professionalProfessional profile. The uncertain legal position surrounding actions of the caring personnel such asäs setting up and monitoring infusions, and a legal,legal, contractual and in­in- surance framework which varies from Land to Land, leaveleave littlelittle scope for creative work oriented toward the patient. It seems that the formal structures (e.g.(e. g. changing shifts, includingincluding weekends and nights, lowlow pay, poor in-jobin-job training, little chance of promotion) are the main reason for the collapse of the status of the occupation and thus for the declining quality of care. Such a hypothesis could be the subject of scientific research. But here, too, caring and nursing is slow to advance. It still does not have itsits own access to academic trainingtraining.. The contents, organization and basic criteria of caring and nursing are therefore largelylargely untested, unsystematic and on an unsound footingfooting.. In the hierarchy of the health profession the carers are near the bottom. They are increasingly caught inin a conflict between their role asäs carer (humanity) and their identificationidentification with the goals and methods of the medical systemSystem (functionality). InIn order to increaseincrease their standing it seems essential to side with the stronger partner, namely with the doctors and the medical systemSystem.. Thus nursing and caring activities which are closely related to medical tasks (e(e..g. measuring blood pressure, giving injections,injections, assisting inin diagnostic procedures etc.)etc. ) enjoys a higher prestige than helping with personal hygiene or feeding. The personnel from intensiveintensive wards, tumour centres or AIDS wards enjoy a higher standing than colleagues from so-called peripheral depart­depart- ments, who "only" provide general care. This struggle for standing and power extends outside the hospital. Those working at social stations or out-patient nursing servicesServices have a lowerlower reputation than those working at university hospitals - not to mention the levellevel of pay. An important factor for nursing and caring personnel isis the patient's evaluation of their work, expressed both verbally and non-verbally. This pro-

84 videsvides anan additional,additional, butbut nono lessless effectiveeffective formform ofof 'reward''reward' oror 'reproach''reproach' forfor thethe work.work. GermanyGermany cancan bebe referredreferred to,to, withwith samesome justification,justification, äsas a a "developing"developing coun-coun­ try"try" äsas farfar äsas nursingnursing andand caringcaring isis concerned.concerned. TheThe contrastcontrast isis allall tootoo starkstark be-be­ tweentween thethe stagnationstagnation ofof carecare atat aa comparativelycomparatively lowlow levellevel andand thethe develop-develop­ mentsments inin medicalmedical treatmenttreatment andand research.research.

3.3. CaringCaring forfor peoplepeople withwith AIDSAIDS inin GermanyGermany

TheThe firstfirst people inin GermanyGermany needing treatmenttreatment and care forfor AIDS were inin thethe hands of doctorsdoctors and nursing staff who were fairlyfairly unprepared forfor thethe task.task. Clinics and social stations had inadequateinadequate knowledge and experience inin dealing with AIDS patients.patients. In thethe centres of population a medical infrastruc-infrastruc­ tureture soon developed which enabled people with AIDS toto find experienced doctors and hospitals. However, there was still no effective network of nursing and caring. The non-governmental AIDS-Hilfen were active in organizing psycho-socialpsycho-social help for people with HIV/AIDS, but for a long time they did not see it äsas one of their main tasks to organize,organize, finance and implement pro-pro­ fessional care.care. In Germany, care outside of hospitals was seen for many years asäs at best a supplementary service to hospital treatmenttreatment.. Therefore both legal and funding bodies have tended to neglect iit.t. This has in turn meant that there has been little motivation to care for AIDS patients (or other critically illill people such asäs tumour patients) outside the hospitals or even to looklook after those dying at homehome.. With the possibility of early medicinal anti-retroviral and prophylactic therapy the situationSituation for people with HIV/AIDS has changed changed.. AIDS isis still regar­regar- ded asäs being without a cureeure,, but itit has lostlost thethe character of being an illnessillness which isis always severesevere,, necessarilynecessarily requiringrequiring intensiveintensive stationary treatmenttreatment,, and leadingleading rapidlyrapidly toto death. AIDS now presentspresents a challengechallenge above all toto thethe fieldfield of caring and nursing. A featurefeature of providing carecare forfor AIDS patientspatients isis thethe erraticerratic andand unpre­unpre- dictable development ofof the the illnessillness.. ThisThis affects affects thethe behaviourbehaviour andand attitudesattitudes ofof both thethe patient andand thethe carerscarers.. InIn additionaddition mostmost ofof thethe patientspatients areare youngyoung adultsadults whowho havehave been forcedforced toto thethe edgesedges ofof societysociety becausebecause ofof theirtheir lifestylelifestyle (gays,(gays, drugdrug users,users, bisexuals)bisexuals).. OftenOften theythey areare nono longerlanger integratedintegrated inin aa socialsocial network,network, havinghaving brokenbroken offoff contactscontacts toto theirtheir family,family, andand seenseen friendsfriends andand partnersPartners ddieie ofof AIDSAIDS.. ManyMany faceface financialfinancial problemsproblems afterafter havinghaving hadhad toto stopstop worworkk prematurely,prematurely, andand now now rely rely on on social social payments payments.. AboveAbove allall thesethese areare generally generally patients patients who who are are well well informedinformed about about their their illnessillness andand itsits prognosis,prognosis, asäs well weil asäs the the optionsoptions forfor treatmenttreatment.. TheyThey areare inin a positionPosition toto determinedetermine thethe necessarynecessary carecare interventionintervention themselvesthemselves..

ThisThiscan can includeinclude:: •. carefulcareful medicinalmedicinal prophylaxisprophylaxis •. helphelpwith w ith dailydailytasks tasks •. intensiveintensive observation observation of crf the the patient patient

8585 with additional care in specific instancesinstances forfor:: • opportunistic infections • infusion therapy • inhalation therapy • pain therapy • round-the-clock carecare..

SomeSame 80% of the disorders associated with HIV and AIDS can now be treated outside hospital. With the sometimes superfluous hospital treatment of AIDS patients becoming more and more expensive, the need to make savings has given added impetus to the trend towards providing treatment and care on a non-stationary basis.

Changes

1. The state modelmode) programmeProgramme 1987 - 1991

"As much non-stationary asäs possible, asäs much stationary asäs necessary!"necessary! " was the motto in 1987 of the German government's model programmeProgramme to ""DevelopDevelop non-stationary assistance within the framework of social stations for people with AIDS"AIDS".. This model programmeProgramme was part of the state programmeProgramme to tackle AIDS immediately, involving various fields of actionaction.. The social stations were the principal centres for non-stationary nursing, care and domestic services,Services, and funds and personnel were to be provided to enable them to offer long-termlong-term domestic care for AIDS patients. A multipli­multipli- cation effect was envisagedenvisaged.. Centrally trained experts were to be locatedlocated nationwide at the regularregulär out-patient care stations, providing relevant further training for the carers and offering them the opportunity to acquire addi­addi- tional qualificationsqualifications.. Funding was provided for somesame 200 posts at 35 modelmode! stationsstations.. However, it soon became clear that conceptional errors had been made when drawing up the plansplans.. There had been misconceptions concerning both the day-to-day operationOperation of the social stations and the demand for nursing and care servicesServices.. With the conclusion of the model programmeProgramme a number of significant, previously unseen problems relating to non-stationary nursing and care had been registered: a) Non-stationary AIDS care isis .• cost intensive •. time intensive •. labour intensive •. hard to predict and plan •. not feasible with the available personal and financial resources of the social stations

86 b)b) Non-stationaryAIDSNon-stationary AIDS carecare includesincludes threethree elements:elements: .• thethe Provisionprovision ofof suitablesuitable nursing/medicalnursing/medical carecare inin phasesphases of of acuteacute infectioninfection .• maintainingmaintaining thethe healthhealth statusstatus quoquo requiresrequires thethe Provisionprovision ofof prophylarticprophylactic measuresmeasures toto avoidavoid complicationscomplications andand furtherfurther hospitalhospital stays;stays; .• dependingdepending onon thethe levellevel ofof independenceindependence of ofthe the patient,patient, anan organizationalorganizational structurestructure mustmust bebe establishedestablished toto copecope withwith thethe household,household , e.e.g.g. domesticdomestic care.care .

WithWith people people livingliving langerlonger with with HIV/AIDS,HIV/AIDS, non-stationary non-stationary AIDS AIDS care care isis becomingbecoming increasinglyincreasingly the the carecare ofof thethe chronic,chronic, veryvery seriouslyseriously ill.ill. ItIt isis therefore therefore involvedinvolved inin allall thethe psycho-socialpsycho-social conflictsconflicts whichwhich arisearise inin nursing andand therapytherapy whenwhen thethe patientpatient isis caredcared forfor throughthrough toto death.death. ThereThere waswas alsoalso anan underestimationunderestimation ofof thethe amountamount andand intensityintensity ofof carecare necessarynecessary eveneven forfor supposedlysupposedly "easy""easy" care tasks,tasks, where therethere are no current opportunisticopportunistic infections,infect ions, but still continual mental and physical decline. AA largela rge number ofof AIDSAIDS patients suffer fromfrom temporarytemporary or continual signs of cerbro-organic, neurological and mental changes.changes. Such illnessillness can often mean a rapidrapid lossloss of independenceindependence in all respects,respects, so that thethe nursing personnel and carers need toto have profound knowledge of psychiatric care. The patients must be offered orientation which allows them to re-establish links to theirtheir surroundings, theirtheir friends and relations, and to regain independence.independence. Out-patient AIDS care thus involves intensive involvement with the patients and their friends and relationsrelations.. It is characterizedchararterized by detailed explanation,explanation, counselling, psychological help and guidance for carecare..

The conclusions to be drawn for the tasks facing the ambulant care of people with AIDS: •. On the one handhand,, retaretainingining the the maximum levellevel of independenceindependence within the patient's worldworld.. "Activating care" thereforetherefore includesincludes counselling, working out care measures wwithith covercover for deficits inin self-careself-care,, instructionsinstructions inin thethe use of care aidsaids. . •. On thethe other handhand,, infectinfectionsions cancan oftenoften leadlead toto an increasedincreased dependence on carecare.. This iinvolvesnvolves iintensiventensive generalgeneral andand special carecare,, which must alsoalso taketake account of thethe emotionalemotional burdenbürden on on thethe patientpatient and and their their close dose ones ones..

TheThe importanceimportance ofof thethe relationshiprelationship betweenbetween carercarer andand thethe AIDSAIDS patientpatient alsoalso reachesreaches aa levellevel whichwhich hashas longlang beenbeen recognizedrecognized byby eexpertsxperts toto havehave thethe importanceimportance ofof medicaments.medicaments.

2.2. The The non-governmental non-governmental response:response: Self-helpSelf-help takes takes on on ambulant ambulant AIDS AIDS care care

TheThe modelmodel programmeProgramme toto setset upup non-stationarynon-stationary helphelp forfor AIDSAIDS pat patientsients alsoalso allowedallowed the the participation participation of of the the AIDS-Hilfen AIDS-Hilfen andand care care projects projerts set set up up by by self­ self- helphelp groups.groups. LackLack of of funds funds meantmeant thatthat the the AIDS-HilfenAIDS-Hilfen andand associated associated carecare projectsprojects hadhad toto mobmobilizeilize those those directly dirertly affected affected in in order order to to provideprovide care care for for people people with with AIDS.AIDS. However,However, self-help self-help is is not not sufficient sufficient toto cope cope withwith these these taskstasks. . This This explains explains

8787 thethe various cooperationcooperation andand coordinationcoordination agreementsagreements betweenbetween thethe carecare projects of thethe AIDS-Hilfen and and other organizations.organizations. SomeSome ofof thesethese appearappear a bit strange,stränge, but theythey allow thethe creativecreative andand constructiveconstructive coordinationcoordination ofof a wide range ränge of regionalregional possibilities to to care for for peoplepeople with with AIDS. With thethe conclusionconclusion of thethe modelmodel programmeProgramme inin 19911991 thethe established welfare organizations began toto retreatretreat fromfrom thethe carecare of AIDS patients patients.. But notnot thethe AIDS groups and theirtheir care projectsprojects.. Despite thethe confusion at thethe end of thethe model asäs toto how the complexcomplex carecare activities couldcould be maintained without furtherfurther subsidies and public funding,funding, theythey feltfeit particularly obliged toto provide care. InIn addition, and inin contrast to many social stations, theythey were also al­al- ready providing a largelarge amount of care. The result was the development of care servicesServices which were brought together in 1991 under thethe umbrella of thethe Deutsche AIDS-Hilfe e.Ve. V.. (D.A.H.)(D. A. H.) asäs a nationwide association.

22..17 Ther/ie Association ofofAmbulant Ambulant Care (AGAV)

13 care servicesServices throughout Germany are joined together inin this associationassociation.. Although they work under varying conditions, with different modes of funding, they have been able to develop a uniform approach to care, coupled with high standardsStandards of care.

Funding All Servicesservices are funded by local authorities and Laender. The funding differs considerably from Land to Land, and the usual contractual agreements which apply between health insurances and welfare organizations are often aug-aug­ mented by special rates for the care of people with AIDS.AIDS . This is still often not enough to cover the costs of the complex organizational and care Servicesservices needed.needed.

Personnel and specialization A service team of thethe AGAV consists of full-time trained staff, qualified in "domestic care", "nursing and care", "psycho-social Support",support", "social work" and "caring forfor thethe next of kin". This "local" personnel is usually backed up by an administrative group, consisting of at least a manager and a book-keeper.book-keeper. They are responsible forfor negotiating with the people who hold the purse strings, monitoring thethe finances, and theythey represent the Serviceservice in public. On variousvarious committees and elsewhere the leading members of thethe care Serviceservice also have thethe importantimportant functionfunction of presenting thethe needs of people with HIV and AIDS toto welfare associations, politicians and other potential partners. AsAs soon äsas the the AIDS-Hilfen and thethe associated care Servicesservices began toto taketake on thethe Provisionprovision of care itit was recognized that that thisthis had a political element. Efforts were made toto extendextend thethe limitationslimitations imposedimposed by thethe health System.system. Thus todaytoday itit hashas become fullyfully acceptedaccepted thatthat thethe infusionsinfusions requiredrequired äsas part of AIDS care cancan be carriedcarried out andand monitored by care personnel. People with AIDSAIDS can pass

88 away inin their hörne,home, next of kin are cared for, night watches are held, and prophylactic measures are paid for.for.

In-job advice and trainingtraining All Servicesservices offer personnel paid advice sessions and regulärregular team meetings, which are intended to highlight and develop various critical aspertsaspects of the work.work. It should be noted that in Germany such support for caring and nursing per-per­ sonnel is by no means commonplace, although help for the helpers is regarded äsas the basis for work of a constantly high quality. Weekly team meetings are held to ensure internal communication and coordination.coordination . At a national levelthelevel the exchange of information is possible at training courses, attended regularly by all Services,services, which are tailored to meet the various special needs (e(e..g. administra­administra- tion, care, Services).services) . In addition to brushing up special knowledgeknowledge,, and acquiring personality-building abilitiesabilities,, an additional important aspectaspert is the establish­establish- ment of joint strategies and actions,actions, ensuring e.e.g.g. that the same lines of argu­argu- ment are used in negotiations with funding institutionsinstitutions..

Caring for patients The Servicesservices in the conurbations care for between 8 and 15 patients. At times samesome Servicesservices experience peaks, but the number of patients does not directly reflect the energy and the effort involved in the caring work. In the rural areas,areas, trips can be asäs longlang asäs 1 hour (60 km) so that the capacity is corres­corres- pondingly lower than inin the citiescities.. The servicesServices in the cities, such asäs Munich, Hamburg or Berlin, put the daily requirement for nursing and care at six hours daily. Most people came intointo contact with the servicesServices through hospitals or verbal propagandaPropaganda.. The servicesServices of the AGAV are usually at the limitslimits of their capacity, and therefore have waiting lists. The demand for ambulant AIDS care isis growinggrowing.. Social stations also make use of the AGAV care servicesServices and "transfer" pa­pa- tients to themthem..

Conflict solving strategies When care becomes a place of social learninglearning for all those involvedinvolved then thethe potentialPotential for frictionfrirtion and conflict necessarily increasesincreases.. For the care personnel of the AGAV-Services thisthis means: Understanding oneself asäs a tool,tool, which requiresrequires knowledge of oneone's's strengths and weaknesses, inin orderorderto to reduce asäs far far asäs possible "repetitions""repetitions" of earlier key experiences. These could express themselves,themselves, for example, inin thethe feeling of having to taketake on particularly arduous and "difficult" care, or of being able to work with a pronounced emotional involvementinvolvement inin thethe care -- despite clear signs of overloading etc. An holistic approach to care on thethe basis of "caring for people of thethe same age", or often of "care by people also directly affected", asäs followedfollowed by thethe AGAV, must offer protection forfor all thosethose involvedinvolved and must ensure thatthat in­in- volvement leadsleads neither toto mutual incapacitationincapacitation nor goes tootoo far.far.

8989 For the the patient thethe inter-disciplinaryinter-disciplinary team team thereforetherefore offers a release. The teamteam not only Supportssupports itsits individualindividual members, but also followsfollows theirtheir work critically.critically. The instrumentinstrument of collegial counselling and special sessions with advisors can help carers toto examine role shifts, expectations, signs of affection and love,love, re-re­ jections,jections, transferencetransference and counter-transference.

Planning and documenting care In classical formsforms of self-help, in which ideally the competence of being directly affected isis combined with expert knowledge, the Situationsituation of the person directly affected is thethe focal point of the work in an exemplary manner.manner. The ups and downs of the illness justifyjustify care and medical measures which are open-ended.open-ended. This means that the rängerange of options for care, which can switch suddenly from aa minimum, through intensive care to being present at the deathbed all had to be taken into account when planning the Service,service, and are expressed in

• the staff numbers • the qualifications of the personnel • the timescale drawn up for individual care • care planning and documentation, and in • the formulation of the care aimsaims..

In accordance with the WHO Programme "Health for all by the year 2000", the aims of the care were developed together with those directly affected. Responsibility is divided, inin the sense of a "cooperation agreement", providing a working basis between professionals,Professionals, those directly affected and the lay­lay- carers, on which to decide what isis acceptable, practicable and sensible, and also desirable and bearable on the part of the person directly affected. The final point isis the realistic assessment of the observation period after which the success of the care isis to be checked. The care provided by the the AGAV care service Service is is thus thus planned and documenteddocumented.. This isis still not obligatory inin Germany, and isis not a criteria for registrationregistration asäs a care service,Service, with the exception ofofthose those receivingreceiving public funding.funding.

Theoretical foundationsfoundations The AGAV isis thethe firstfirst and only group offering out-patient AIDS carecare which operates throughout throughout Germany with the the samesame approach, the the same standards, Standards, the the same theoreticaltheoretical foundationsfoundations and with comparablecomparable carecare documentationdocumentation. .

The servicesServices are based on centralcentral aspectsaspects ofof thethe followingfollowing approachesapproaches toto carecare:: •. Erich BbhmBöhm (Orientation(Orientation andand activatingactivating care)care) •. Dorothea Orem (Self-care(Self-care abilityability versusversus self-careself-care deficits)deficits) •. ImogeneImogene King (Care(Care asäs interaction)interaction)..

InIn termsterms ofof development standards,Standards, thethe stipulationsstipulations ofof thethe ICNICN (International(International CouncilCouncil forfor Nurses)Nurses) andand thethe guidelinesguidelines ofof thethe WHOWHO onon qualityquality assuranceassurance inin carecare werewere followed.followed.

9090 TheThe approach toto care The AGAV defines care äsas social action between twotwo or more persons, so thatthat care isis a matter forfor negotiation between thosethose involvedinvolved inin thethe process.process. AIDS care isis not a matter of feeding and cleaning but,but, using thethe words of Erich Böhm,B6hm, isis care with "one hand in the packet",pocket", thus activating thethe patient. The AGAV removes care from its traditional position of giving, and of knowing what isis best forfor someone eise,else, and gives the patient samesome responsibility and aa role of theirtheir own: With the support of the AIDS care the patients are to be enabled äsas far äsas possible to live an independent life with their friends and relations.relations. Care isis thus an accompanying Professionalprofessional Service,service, for regaining or stabilizing independence.independence. Such an approach also defines the position of the Professionalprofessional AIDS carers:carers: They are the langlong arm of the patient, helping to maintain or to reconstruct what the patient understands äsas quality of living.living. Care must therefore be closely matched to accommodate the wishes, habits and dislikes of the patient, and if necessary re-negotiated from day to day.day. Care loses its quality and itsits credibility the moment it goes beyond the presentation of good arguments and begins to push things through overaver the heads of patients or in oppositionOpposition tothem.to them. This approach to care does not mean preaching harmony or self-ex­self-ex- ploitation, which seems to be an ever-present danger in the isolation of a one­one- on-one care Situationsituation in the cared person's flat. But it does mean a pro­pro- fessional approach to care which does not need to build up self-assurance by exercising power and dominance, but which allows the carers to present their knowledge and ideas for discussion without losinglosing authority or becoming unable to work. In order to do justice to thisthis complex activity the AGAV works with the relationship process between thethe carers and thethe person who isis cared forfor.. Each patient has a counterpart carer, who offers a primary relationship to thethe patient, independentindependent of other colleagues involvedinvolved inin providing care. This involvesinvolves the carer openly siding with thethe patient, which thethe latterlatter can use inin difficult conversations with parentsparents,, doctors etc. The carer has an importantimportant rolerole to play inin thethe fieldfield of conflict between patientpatient's's desire for autonomy and theirtheir actual dependence - - at leastleast inin part­part- when it comes to meeting theirtheir needsneeds.. The carer can be thethe motor toto activation, or the only personperson towardstowards whom thethe patients freelyfreely showsshows thethe weakness and fearfear theythey feel.-feel. At thethe samesame timetime thethe carerscarers must comecome toto termsterms with thethe patient's need toto establish limitslimits,, and with patternspatterns of coping which findfind expression inin various ways, ee..g. inin jealousyjealousy and explosions of anger, and which keep redefiningredefining thethe possibilitiespossibilities and limitslimits ofof caring.caring.

StandardsStandards of carecare The quality of AIDS care care providedprovided isis alwaysalways inin dangerdanger ofof sufferingsuffering underunder thethe organizationalorganizational,, financialfinancial andand practicalpractical conditionsconditions alreadyalready outlined.outlined. AtAt thethe samesame timetime qualityquality isis thethe onlyonly wayway ofof remainingremaining competitivecompetitive andand attractingattracting fundsfunds atat aa timetime when resourcesresources areare becomingbecoming scarce.scarce. TheThe qualityquality standardsStandards developeddeveloped nationallynationally byby thethe AGAVAGAV reflectreflect thethe experienceexperience ofof fivefive yearsyears

9191 professionalProfessional care work for people with HIV/AIDS from the point of view of self­self- helphelp.. Thus the care work gains the transparency which makes it compre­compre- hensible for others - the so-called lay-public.lay-public. Thus the standardsStandards for care represent a sort of "consumer protection" for the people affected by AIDS, allowing them to distinguish between inferiorinferior care and quality carecare.. Standards are to prevent the patients becoming the "victim and plaything" of varying expert opinions or of the specific motivations of individualindividual personnel. When care servicesServices establish a consensus by means of standardsStandards then decision processes are faster, and work procedures can be made more precise, without losing quality. Funding bodies also need standardsStandards asäs an instrumentInstrument for quality assurances, with which they can easily judge the value of services.Services. Features of the standardsStandards of the AGAV areare::

• They take into account various care categories when describing the aims and the scope of the care and other servicesServices;; • The "moral-ethical" leitmotif attached to every standard;Standard; • The holistic approach to care and other services;Services; • The communicative aspect of all the standards;Standards; the "negotiation" of care between the individual and the carers; • TheyTheytake take into account "complications" and necessary "reorganization"; • Checklists are drawn up for each standardStandard with practical tips inin an appendix.

The Standardsstandards of the AGAV are not restricted to describing processes. Against the background of their formally different general set-up and their experience, they formulate a) at the level of the structural standardStandard the organizational requirements, e.ge. g.. personnel, qualifications, material fundamentals etc. inin order b) to allow the staff at the process levellevelto to get things done together with the patient and their closedose ones using certain implementationimplementation proceduresprocedures,, so that c) at the result level the planned results are there for all to see and to check using previously defined objective criteriacriteria..

Drawing up standardsStandards can give rise to livelylively and constructive discussions with the aim of achieving a satisfactory agreement about future work organization and ways of coping with practical problems. InIn the course of the work the standardsStandards must then be continually checked and their implementationimplementation controlled. They therefore represent a creative opportunity to refresh expert knowledge and to compare one's behaviour with other people's impressions.

92 PerspectivesPerspectives

AsAs longlong äsas carecare workwork isis defineddefined solelysolely byby thosethose providingproviding thethe fundsfunds itit willwill onlyonly bebe possiblepossible step-by-stepstep-by-step toto establishestablish anan ambulantambulant carecare sectorsector whichwhich combinescombines thethe competencecompetence ofof thethe expertsexperts andand thosethose directlydirectly affected.affected. AtAt present,present, forfor example,example, psycho-socialpsycho-social support,support, oror Companycompany forfor thethe dyingdying areare stillstill notnot seenseen äsas integralintegral andand Professionalprofessional componentscomponents ofof all-roundall-round care,care, denyingdenying itsits ownown rolerole andand therapeutictherapeutic effecteffect beyond thatthat of an auxiliary serviceservice forfor thethe medical sector.sector. ThusThus thethe AIDS-HilfenAIDS-Hilfen and thethe associated care Servicesservices have no Optionoption but toto continue seeing thethe care of people with HIV/AIDS äsas political work, toto stick toto quality äsas the the prime criteria, and toto put more emphasis thanthan inin thethe past on thethe dignity of thethe individual.individual. This isis thethe only fittingfitting response toto thethe growing tendencytendency of existing health policies toto disguise the inadequate provisions for care Servicesservices and nursing by transforming health to a luxuryluxury commodity,commodity, thus privatizing thethe risk of sickness.sickness. Politically this means that the care Servicesservices and the AIDS-Hilfen will carry on exposing the deficiencies oftheof the health care System,system, and will demonstrate how creative care concepts can be developed for very ill and dying people, with the care of people with HIV/AIDS asäs an example. Economically this means: Care servicesServices and AIDS-Hilfen will continue to work for the provision of a spectrum of servicesServices which focus on the individual asäs a whole and not asäs separate functions. For care this means: Continuing to strive for the correct balance between closeness and professionalProfessional distancedistance.. Addressing people with HIV and AIDS thisthis meansmeans:: Raising thethe hope of involved,involved, unprejudiced and competent care, which does not come with thethe features of welfare, and does not want be understood asäs charity. The hope of care which has the the same basic tenetstenets whether itit isis inin a hospital or at home.home.

Reference

Besselmann.Besselmann, K.;K. ; Sellin,Sellin, C;C. ; Borchers,Borchers, A.;A. ; MMelchinger,elchinger, H.:H. : ModellprogrammModellprogramm "Ausbau"Ausbau ambulanterambulanter HilfenHilfen fOrfür AIDS-ErkrankteAIDS-Erkrankte imim RahmenRahmen vonvon Sozialstationen"Sozialstationen" desdes BundesministeriumsBundesministeriums fOrfür Gesundheit.Gesundheit. E Endberichtndbericht der der wissenschaftlich wissenschaftlichenen B Begleitung,egleitung, Koln, Köln, Hannover Hannover 1992 1992

9393

NON-GOVERNMENTALORGANIZATIONSNON-GOVERNMENTAL ORGANIZATIONS IN EUROPE: NETWORKING AS A TOOL FOR INFORMATION, EDUCATION AND PREVENTION

Petra Narimani, head of dept. "International Relations", Deutsche AIDS-Hilfe

"We"We have learned that we cannot succeed alone - alone in our discipline, alone in our culture, alone on our country or region - yet we have difficulty findingf inding a common language and working together. We have seen that isola-isola­ tion is inefficient and dangerous - and that the exchange, dialogue, tolerance and solidarity are sources of strength and pathways to more effective control and care." This is what Jonathan Mann, Chair of the VIII International Conference on AIDS, said in his speech in Amsterdam, 19th July 19921992.. The rapid development of many different networks (many of the European ones are united in EuroCASO) isis an indicationindication of the growing awareness and recognition that AIDS isis an internationalinternational issueissue.. Collaboration at locallocal,, national and international level is essential in our efforts to impactimpact upon the spread of the diseasedisease.. As the EC countries are growing together (or at leastleast make efforts to) and, at the same timetime,, political changes inin Central and Eastern Europe are creating newnewsituations situations inin which HIVHIVtransmission transmission might considerably increaseincrease,, the networks of AIDS serviceService organisations and self-help groups should be joined, used and made more efficient. Many self-help groups and organizations suffer fromfrom lacklack of opportunities, lack of resources, experiencesexperiences,, skills and strategies. We know how itit feelsfeels not to be able to respond to thethe daily challenges, tragediestragedies and needs even when we want toto.. Networking and exchange of expertiseexpertise,, energy and power isis essential forfor communities toto be able toto create,create, set up and develop community­community- based groups and organizations intointo independentindependent and strongsträng unitsunits.. The feelingfeeling of belonging toto greater communitiescommunities and networks empowers peoplepeople to stand up against prejudice, lacklack of authorities commitment, and claim theirtheir rightright to actively care for for themselvesthemselves and the theirir communitiescommunities.. Networking can be highly effectiveeffertive inin spreadingspreading informationinformation and educa­educa- tion,tion, inin promoting thethe exchangeexchange of experience and skills betweenbetween AIDS serviceService organization, inin advocating thethe rightsrights ofof individualsindividuals andand communitiescommunities af­af- fected,fected, thethe rightsrights of accessaccess toto resources,resources, carecare and and support, support, andand the the rightright to to livelive freefree fromfrom discriminationdiscrimination.. TheThe problemsproblems we areare confrontedconfronted withwith inin individualindividual countries are rarelyrarely uniqueunique oror completelycompletely new.new. That'sThat's whywhy everyevery countrycountry cancan benefit fromfrom accessaccess toto aa varietyvariety ofof solutionssolutions andand programmes.programmes. Networking isis aa processprocess ofof self-empowermentself-empowerment,, aa responseresponse toto AIDSAIDS atat locallocal,, nationalnational andand internationalinternational levellevel withwith specialspecial regardregard toto peoplepeople livingliving withwith HIV/AIDSHIV/AIDS andand allall thosethose affectedafferted byby thethe ddisease.isease. ItIt highlyhighly supportsSupports sparselysparsely

9595 developed NGO sectors with limited resources, because it assures participation and integration inin thethe regional networking structures by developing mecha-mecha­ nisms forfor support, and exchange of experience with well-equipped so-called Western NGOs.NGOs. On thethe first "European Meeting of Self-Help Groups of People with HIV/AIDS" which took place in Göttingen/GermanyGottingen/Germany on 18th - 22nd June 1992, the importance of interrelationships became quite obvious.obvious. In his greetings to the Conference, Horst Seehofer, Federal Minister of Health in Germany, said:said: "Information is always the most important tool to counteract a disease which does not stop at state borders. The motto isis:: Learn from each other to ease jointlyjointly the fate of the afflicted."afflicted." Delegates of more than 40 groups of people with HIV/AIDS from 22 European countries were given the opportunity to present themselves, to exchange experience and to get in touchtauch with each other. This meeting (the documentation can be obtained through the Deutsche AIDS-Hilfe, Berlin) was a first important step towards an effective co-operation and a common lobbylobby.. The process of discussion must be continued.

European Community-Based Organizations (CBOs) and the Twinning Project

At the national level, there isis a great number of networks such asäs "Positiv ee..VV.. iinn Germany or "Body Positive" and "Positively Women" inin Great BritainBritain.. All averover Europe, there are also lotslots of national self-help groups of drug users (e.g.(e. g. JES in Germany, MAINLlNERSMAINLINERS inin Great Britain or ASUD inin Paris), of gay groups, sex workers organizations etc. Recognizing that the informalinformal channels of exchange and the groups' activities have not been sufficient enough, EuroCASO has developed the "Twinning projectproject".". The idea is to set up a design which provides an op­op- portunity for community-based organizations to formform more committed and stable exchange interrelationshipsinterrelationships.. East-West and North-South perspectives also play a part inin launching thisthis project. The Twinning project isis based on a cheap and simple modelmodel:: It only needs funds for travel and, inin somesame cases, administrationadministration.. The twinning could consist of one return visit by two people from each CBOCBO.. The host CBO contributes with training, field activities, participation inin workshops etc. When people affected by HIV come together, therethere isis a great chanceChance that that theythey will develop relationships based on common identities,identities, interests,interests, experiences, skills, chal­chal- lenges,lenges, faith, dreams or idealsideals.. Ever since thethe beginning thethe AIDS epidemic, people have come together and introducedintroduced informalinformal and powerful twinningtwinning relationshipsrelationships..

9696 E.E.I.G.D.U.I. G. D. U. -- European Interest Group of Drug Users

InIn Europe, severalseveral million people use illegal drugs.drugs. Drug use should not be labelledlabelled a personal disorder or tragedy.tragedy. Authorities inin Europe normally put consumers of illegalillegal drugs intointo prison or under certain restraints which crimi-crimi­ nalize them.them. It is,is, however,however, indisputable that criminalization and the "War on Drugs" are no solution to the problem.problem. The black market, organized crime and widespread drug use are a consequence of the international prohibition of certain drugs. Thus E.E.I.I.G.D.UG. D. U.. claims for legal changes, an improvement of the Situationsituation of drug users in prisons, and adequate treatment options.options. These de-de­ mands are part of a declaration which was passed by 26 groups (50 participants) on thethe "Second European Workshop for HIV-Affected Drug Users" in Berlin, 1stIst December 1991. E.E.I.I.G.DG. D..U.U. was established in 1990 after an initiative taken by JES (Junkies, Ex-Ex­ Users,Users, Substitutes) and the Deutsche AIDS-Hilfe,AIDS-Hilfe, Berlin, Germany. Since then, the group has organized three European workshops which were financially supported by the WHO.WHO. On the last workshop in Verona in December 1992, a "Report on the Situation of Drug Users in Europe" was presentedpresented.. It was com­com- piled by members of EE..I.GI. G..DD..UU.. and financially supported by the EC. At a board meeting in Oso in April 1992, EE..I.GI. G..D.D.UU.. decided to join EuroCASOEuroCASO..

EATG - European AIDS Treatment Group

The EATG which was founded inin February 1992 isis a co-operative network of people from different nations and HIV-affected communitiescommunities.. The goals of the EATG area re

•. to achieve effective treatmenttreatment and access toto experimental therapiestherapies for asäs many people with HIV asäs possible and •. to enable people with HIV to have maximum control overaver thethe treatmenttreatment and research agenda.

InIn 1991, a "European AIDS TreatmentTreatmentAgenda" Agenda " was publishedpublished.. InIn thethe same yearyear,, thethe "European"EuropeanAIDSTreatmentNews"wascalled AIDS Treatment News" was called intointo being, a newspapernewspaperwhich which isis issuedissued bimonthly. The EATG isis part of a European effort toto enhance thethe networking and co-operation of ASOs as äs initiatedinitiated by EuroCASO while putting special emphasis on the informationinformation about treatments treatments and trials trials inin HIV disease.

Network of Sex-Related HIV/AIDSHIV/AIDS ProjectsProjerts

The ideaidea of forming forming a globalglobal networknetwork of of sex sex workers,workers, ex-sex ex-sex workersworkers and and people people working on sexsex work relatedrelated HIV/AIDSHIV/AIDS projects projects waswas a a resultresult ofofthe the "International"International Conference of Non-Governmental AIDSAIDS ServiceService Organizations"Organizations" inin Paris,Paris, 1990.1990. For thisthis network, too,too, thethe ideaidea isis toto createcreate solidarity,solidarity, toto makemake possiblepossible anan ex­ex- changechange of of skills,skills, toto provideprovide resources,resources, andand to to defenddefend human human rightsrights.. The The realiza­realiza- tiontion ofof these these plans plans is is under under way. way. At At present,present, a a secretariatesecretariate is is being being set set up up..

9797 ILGA - International Lesbian and Gay Association

ILGA is a worldwide federation of national and locallocal groups. Founded in 1978, it dates back to the pre-AIDS era. ILGAILGA Europe isis active inin campaigning for gay and lesbian rights and thus involvedinvolved inin AIDS policy issues,issues, asäs many member groups and organizations are more or less AIDS Service Organizations.

Migrants organizations

In somesame European countries, migrants communities, too, have set up their own community-based organizations. Due to mobility and socio-cultural posi­posi- tion, migrants are populations with specific needs for informationInformation on AIDS. In view of the constantly increasingincreasing mobility and recent economic and political developments, the international dimension of the AIDS epidemic and thus the international co-operation isis becoming more and more important. The "First European Conference on HIV/AIDS for the Muslim and South Asian Communities" in London, 9-11th9-1 1th September 1992, is a first step towards an international network of migrants groups. A pre-conference of European migrants self-help groups will take place inin Berlin inin May 1993, shortly before the IXth International Conference on AIDS. From 9-11th May 1992, a workshop was organized on "AIDS Prevention towards the Turkish Population inin Europe" inin which 20 Turkish people from eight European countries participated. It was considered very importantimportant to organize a follow-up which takes place inin Hannover in June this year. Such activities make it possible to make use of media and methods which have al­al- ready been developed inin somesame countries. This reduces manpower and financial costs.

ACT UPDP - AIDS Coalition to Unleash Power

ACT UP groups work according to the specific problems and needs of the individual communities. The activities of ACT UP are at the social, medical and politicalleve!.political level. In order to improveimprove the situationSituation of HIV infectedinfected people, ACT UPDP initiates or takes part inin action making and demonstrations. The ACT UP movement has its roots in the United States of America.

EuroCASO - European Council of AIDS Service Organizations

EuroCASO is a pan-European network of non-governmental, community­community- based organizations and an integralintegral part of the global InternationalInternational Council of ASOs (ICASO). Being a "Forum for Networks inin Europe", EuroCASO embraces gay groups, organizations of and for people with HIV/AIDS, sex workers or­or- ganizations, drug users self-help initiativesinitiatives and bodies for people belonging to ethnic minorities. It offers these groups the opportunity to present their work in the EuroCASO Newsletter, and tries to secure wide representation at the

98 Annual General Meeting.Meeting. In the future, EuroCASO will organize pre-confer-pre-confer­ ences for self-help groups prior to its own annual meetings.meetings. Moreover,Moreover, human rights will become a focus of attention and EuroCASO wants representatives of self-help groups to take part in this work. EuroCASO has a Secretariate, a Development Office, a Newsletter Com-Com­ mittee, and a Working Committee which meets four to five times per year. Member organizations are those who have signed the EuroCASO-Charter. EuroCASO, which was established in Vienna in 1990, is, today, an important link for European and international bodies such äsas the EC, the Council for Europe, the WHO, UNESCO etc. It provides access to more than 380 ASOs in 30 European countries, organizes workshops, seminars and annual meetings, it lobbies international AIDS Conferencesconferences and organizes protest campaigns against governments and authorities violating human rights of people affected by HIV/AIDS.HIV/AIDS. Closely related to EuroCASO are the International Steering Committee for People with HIV/AIDS (ISC+) and the Global Network for People with HIV/AIDS (GPN).

9999

LEGAL MEASURES EMPLOYED IN GERMANY FOR COPING WITH AIDS

Friedrich Baumhauer, lawyer, former executive director of the Deutsche AIDS-AIDS­ Hilfe (1990-1992)

Epidemic control measures employed during the first years

The call for compulsory mass testing

The great flood of legal literature dealing with AIDS began to rise pre­pre- cipitously here in the year 19861986.. Until then in Germany, the only contribution to this topic was by the civil-rights expert Erwin Deutsch, from G6ttingen,Göttingen, inin his small essay "AIDS and Blood Donations,"Donations, " published inin the Neue Juristische Wochenschrift.Wochenschrift.1' This modest beginning, however, was soon followed by a whole series of many and various treatments, asäs wellweil asäs by the first court decisionsdecisions.. Under the impression of apocalyptic forecasts discussed inin a great number of medical and epidemiological publicationspublications22 - and asäs a resultresult of moralistic politics which saw inin AIDS a welcome vehicle for thethe suppression of what was,

inin itsits view, undesirable ways of lifelife33 - legallegal viewpoints quickly developed which demanded extensive interventionintervention bybythe the state. Such interventionintervention would above all have been borne by thosethose groups of thethe population especially afflictedafflirted by AIDS: i.ei. e.,., thethe gays, drug users, and prostitutes,prostitutes, asäs theythey belongedbelonged toto what at thatthat time was knownknown asäs "high-risk"high-risk groups." The degree of collusion between moralistic positions and alleged preventivepreventive medical measures became highly apparent inin publications printed inin AIDS­AIDS- forschungforschung (AIFO),(AIFO), one of whose publisherspublishers was Peter Gauweiler, thethe Secretary of thethe InteriorInterior of thethe GermanGerman Federal State of Bavaria. OneOne statementStatement containedcontained thereintherein treatstreats...... ""...... stipulations concerning thethe legallegal regulationregulation ofof thethe restaurantrestaurant tradetrade -- whichwhich,, inin addition toto protectingprotecting humanhuman lifelife andand health,health, areare alsoalso requiredrequired toto promote public morals, preventprevent illegalillegal prostitution,Prostitution, andand (where(where possible)possible) serveserve toto facilitatefacilitate official supervision,supervision, therebythereby includingincluding thethe routeroute ofof infectioninfection especiallyespecially inin restaurantsrestaurants frequented frequented byby 'high-risk' 'high-risk' groups groups.. ","4 These publications presentedpresented blanketblanket demandsdemands forfor intervention,intervention, inin mistakenmistaken interpretationInterpretation ofcrf thethe fundamentalsfundamentals ofof aa statestate governedgoverned byby thethe rulerule ofof lawlaw:: fundamentalsfundamentals which which inin allall cases,cases, andand especiallyespecially inin thethe areaarea ofof thethe ad-ad-

101101 ministration of state intervention, call for careful determination of the appro­appro- priateness, the necessity, and the commensurability of any such measures. These proposed actions were furthermore intendedintended to implementimplement through rigorousness what they lackedlacked inin practicality. They concentrated on the search for so-called sources of infections,infections, asäs well asäs on the conception, generally not specified in detail, of a requirement to "seal up" every lastlast one of these sourcessources. . An exotic climax, in every sense, was reached inin this context inin November of 1989 in a report by Gert G. FrasnerFrösner of the Munich Max von Pettenkofer Institute, which also appeared inin AIFOAIFO.. This report, inin practically exuberant terms, praised to the skies the Cuban AIDS prevention program - which includes mandatory testing of the entire population and internmentinternment of every HIV-positive citizen detected. InIn Fr6sner'sFrösner's opinion, ""...... the responsibly functioning public health serviceService of a socialistic country in which the personal freedom of the individualindividual isis subordinated to the com­com- monman weal, is hardly in a position to react inin any other way to the threat posed bybyAIDS. AIDS ."S"5 As a result of the Cuban experience, FrasnerFrösner believes that work carried out to educate the general public against the dangers of AIDS"AIDS "...... does not appear to be a necessary measure - and, presumably, not the most effective means -- for countering the HIV epidemic."epidemic. "66 For this reason, FrasnerFrösner also recommends forforWestern Western democraciesdemocraciesthe the means of interventionintervention used inin "classical struggles against epidemics,"epidemics, " to be employed inin "judicious fashion,"fashion, " inin addition to in­in- formative work. The action of Bavarian administrative courts has been noteworthy inin this regard, in their support of the above-described policy, and with the aid of unsupported claims and generalizations. InIn one example, the Bavarian Administrative Court of Munich, inin a decision reached on 19 May 1988, upheld the subpoena of a former drug user which had been issuedissued for purposes of performing a further HIV test: although the individualindividual had been drug­cfrug- abstinent for more than three years, and had received a negative HIV test report two years previouslypreviously. 77 The justification provided by the court claimed that "It is appropriate and in accordance with the intentintent of lawlaw that action be undertaken in accordance with Sections 31 ffff.. of the German Federal ActArt for the Control of Epidemics, even inin cases of only extremely slight suspicion of HIV infectioninfection."." The essential factor for the judges on the court was"was "...... the severity of the disease AIDS, which asäs a rule has a fatal outcomeoutcome.." The following fact, how­how- ever, escaped the notice of the judges, or made no telling impressionimpression on themthem:: that those persons who are allegedly endangered by infectedinfected persons are themselves - additionally and particularly - able to determine the degree of risk to which they expose themselves, and that the "cleansing actions" on which the court was required to rule provide the false and dangerous im­im- pression of a degree of protection which inin fact does not existexist.. Argumentation followed inin accordance with the letterletter of the German Federal ActArt for the Control of Epidemics, inin accordance with which the health officials must Instituteinstitute the required investigativeinvestigative actions, even inin cases inin

102 whichwhich suspicionsuspicion ofof infectioninfection transmissiontransmission isis onlyonly suspected.suspected. TheThe formulationformulation ofof thisthis stipulationstipulation grantsgrants publicpublic healthhealth officesoffices inin GermanyGermany nono discretionaldiscretional leewayleeway äsas to to whetherwhether thethe type,type, cause,cause, infectioninfection source,source, oror spreadspread ofof thethe diseasedisease should should oror shouldshould notnot bebe investigated.investigated. AtAt thethe samesame time,time, however,however, thethe BavarianBavarian AdministrativeAdministrative CourtCourt ofof MunichMunich blunderedblundered byby citingciting thethe officialofficial justificationjustification forfor thethe draftdraft ofof thethe FourthFourth ArtAct forfor ModificationModification ofof thethe GermanGerman Federal ArtAct forfor thethe ControlControl ofof EpidemicsEpidemics fromfrom 1979,1979, forfor purposespurposes ofof supportingsupporting itsits decisiondecision citedcited above.above.8s The The fourthfourth ArtAct readsreads äsas follows:follows: "Investigations"Investigations must accordingly be possiblepossible inin all casescases inin whichwhich protective measures comecome intointo consideration inin accordance with thethe stated stipulationsstipulations (reference(reference isis toto SectionsSections 34 ff.ff. of thethe German Federal Act forfor thethe Control of Epidemics)."Epidemics). " InIn accordance therewith,therewith, thethe legislaturelegislature intendedintended thisthis stipulation only äsas an enabling norm, and not äsas a regulation binding health authorities toto a course of action. The Intentionintention äsas enabling norm, furthermore,furthermore, applied only insofarinsofar äsas it involvedinvolved protective measures which must conform toto the criteria of appro-appro­ priateness, necessity, and commensurability. Prime examples of the lack of observance of the above conditions by Bavarian health authorities are provided by their official injunctions issued on prepared stationary forms in cases of "suspicion of infection.infection."" The following injunction has been issued in this manner, printed asäs it is on the forms of official agencies, and served with registration by postal return receipt:

"U."1.1. The practice of prostitutionProstitution by Ms'/MrMs./Mr...... , born on ...... , isis tolerated throughout the entire Federal Republic of Germany, with validity beginning with the date of serving of this injunction,injunction, from this point inin time onward, only under the the condition that that anal, vaginal, and oraloralsexual sexual intercourseintercourse be conducted with condoms. 2. Ms'/MrMs. /Mr...... shall be required,required, beginning with serving of thisthis injunction,injunction, to undergo a blood testtest for HIV antibodies, insofarinsofar as äs such a testtest has not not been performed within threethree months prior to thethe date of serving of thisthis injunction.injunction. This blood testtest -- which can be conducted by any physicianphysician officially licensedlicensed toto practicepractice thethe medicalmedical professionprofession inin thethe FederalFederal Republic of Germany -- shallshall bebe repeatedrepeated atat intervalsintervals ofof notnot longerlanger thenthen threethree months. 3.3. Ms'/MrMs. /Mr...... shallshall bebe required,required, beginningbeginning withwith thethe datedate ofof servingserving ofof thisthis injunction,injunction, toto submitsubmit to to thethe PublicPublic Health Health OfficeOffice responsible responsible inin thethe areaarea ofof her/hisher/his place place of of residence,residence, the the saidsaid physician'sphysician's certificate certificate on on thethe resultsresults ofof anan HIVHIV test, test, and,and, ifif applicable,applicable, ofof repeatedrepeated testing,testing, andand she/heshe/he shallshall be be required required to to presentpresent this this certificate certificate to to the the police police upon upon demand. demand. 4.4. ItIt shallshall bebe forbidden forbidden throughoutthroughout thethe entireentire FederalFederal RepublicRepublic ofof Germany,Germany, beginningbeginning withwith servingserving ofof this this injunction,injunction, forfor Ms'/MrMs. /Mr...... toto useuse such such medicalmedical certificates certificates with with negative negative results results of of HIV HIV testingtesting for -for the the purpose purpose ofof advertisingadvertising inin anyany formform.. ThisThis injunctioninjunction shallshall especiallyespecially prohibitprohibit thethe displaydisplay of of such such medical medical certificates certificates in in the the rooms rooms in in which which prostitution Prostitution is is practiced.practiced.

103103 11.II. InIn thethe event of noncompliance with with thisthis injunctioninjunction,, thethe perpetratorperpetrator shallshall bebe subjectsubject toto a finefine inin thethe amountamount ofof OMDM 10,00010, 000 forfor eacheach casecase ofof noncompliancenoncompliance under SectionsSertions 1.1,1.21. 1, 1. 2,, oror 1.41. 4 aboveabove,, andand toto aa finefine inin thethe amountamount ofof OMDM 1,5001, 500 forfor each casecase of noncompliance under SectionSection 1.31. 3 above.

IllIII.. No feefee shall be imposedimposed forfor thisthis injunctioninjunction."." The above texttext isis followedfollowed by tenten pagespages of explanatory mattermatter,, beginnbeginninging with thethe followingfollowing statement:Statement: "1"I.. According to recordsrecords maintained by thethe Public Health Office, Ms.!MrMs./Mr...... engages inin the practice of prostitutionProstitution.. She/he therefore therefore providesprovides grounds forfor suspicion of ttransmittingransmitting infectioninfection inin thethe sense of Section 22,, Paragraph 3 of thethe German Federal Act Art for thethe Control of EpidemicsEpidemics."."

Explanation isis also provided of thethe reasonreason why no feefee isis imposedimposed for thethe injunc­injunc- tion.tlon. The proponents of such state-enforced measures never tooktook intointo cconsiderationonsideration the ideaidea of acceptance - inin thethe interestinterest of coordinated and, overaver the longlang termterm,, more effective public health policy - of the uncontrolled pre­pre- sence of individual "sources of infectioninfection.." They also failed to the same extent to realize that - in light of the routes of infectioninfection already known by this time­time - the danger for the iindividualndividual likewiselikewise depends on his or her own behaviorbehavior.. These proponents therefore demanded application of the German Federal ActArt for the Control of Epidemics without proper reflection or differentiationdifferentiation.. Their intentions were often associated wwithith the demand for new legislation, since they claimed that the German Federal ActArt for the Control of Epidemics did not suffice to provide effective protection from AIOS.AIDS.9 Inflexible invocation of reference to the "especially" especially great risk of infectioninfection"10insinuated" 10 insinuated uncontrollable paths of transmission, and demands for "safety in every individual case" inhibited carefully considered deliberation in the interest of effective overall strategy."strategy." There were of course more circumspect voices, although they very slowly and hesitantly asserted themselves in legal literature.literature. German Federal Attorney General Manfred Bruns,Bruns, for example, called attention again and again,again, in a series of articles, to the legal reservations which such action raised,raised, and toto the dangers to public health policy of trying to implement state-state­ controlled prevention measures.measures."'2 His argumentation centered on deficiencies,deficiencies, fromfrom thethe aspect of prevention, inin the eloquence of the test results, partly äsas aa result of thethe seroconversion period of up to six months which is currently required.required. He also pointed out thethe psychological effects of mandatory government measures on public readiness toto accept appeals forfor prevention.prevention . InIn thethe finalfinal analysis, he feitfelt thatthat spread of thethe disease would be promoted by propagationpropagation of thethe teststests äsas a preventive measure:measure: mass mandatory testingtesting would merely accord thethe public a deceptive feelingfeeling of security.security. Bruns thereforetherefore argued thatthat suchsuch measures could not be implementedimplemented with justificationjustification based onon thethe German Federal ArtAct forfor thethe Control of Epidemics.Epidemics.1313 Finally, thethe German Federal Ministry of Health and most of thethe German Federal StatesStates decideddecided on a prevention policy which featuredfeatured mandatory of-of­ ficialficial measures onlyonly äsas thethe lastlast resortresort inin individualindividual cases.cases . The attempt was thenthen

104 made by more aggressive proponents to force the German government to stricter measures by bringing the matter before the FederaFederall Constitutional Court, the highest instance in Germany.Germany. It was alleged that the government had neglected toto fulfill its obligations in protection of life and health - äsas stipulated in Article 2, Section 2 of the German Basic Law (embodying the German federal constitution) - from dangers arising from AIDS.U" The Federal Constitutional Court ruled, with reference to precedent cases, thatthethat the federal government was indeed basically obligated to fulfill such obligations.obligations. The court,court, however, restricted any possible intervention by the judicial Systemsystem to cases in which "..." ... the government bodies may have remained totally inactive ...... " or in whichwhich" "...... the previously implemented measures had obviously proved insufficient ...... "15 '5 The judges of the highest court continued that it was "...... not evident that the legislaturelegislature or the executive had failed to fulfill any of their responsibilities for protection which derive from the Basic Law,Law, insofar äsas they had chosen - in accordance with the current status of professionalProfessional discussion,discuss ion, including international viewpoints - to prevent infection by AIDS primarily by taking informative action for the public on the possibilities of infection.infection. "16" '6 It may indeed be concluded that this decision basically ended the discussion äsas to whether it were necessary to resort to compulsory measures in the struggle against AIDS. There is accordingly no legal foundation for including AIDS in the catalog of Section 3 of the German Federal ActArt for the Control of Epidemics, which lists ddiseasesiseases required to be reported to the government, nor is there justification for implementing other measures in accordance with Sections 30 ff.ff. of tthishis ActArt..'717 The courts had, howeverhowever,, failed to answer the question asäs to what extent such measures were admissibleadmissible.. Otfried Seewald has conducted a study to provide a solution which may be termed dogmatic in the administratively legallegal sense. The so-called right to avert danger - a concept to which the German Federal ActArt for the Control of Epidemics also belongs - allows inin general the implementationimplementation of mandatory official measures only against those persons from whom a danger emanates, or who occasion a danger. German lawlaw terms such agents Starer,Störer, or instigatorsinstigators.. Such instigators must accept restrictions of and encroachment upon their rights inin order to fend off or restrainrestrain dangers which they wouldwoulcf otherwise occasionoccasion.. Persons not instigatorsinstigators - and persons with HIVHIV,, or persons who may be only suspected of harboring infectioninfection,, are not instigatorsinstigators inin this sense - basically cannot be subject to such measuresmeasures..'·18 This initiallyinitially dog­dog- matically appearing viewpoint attains a certain appeal by virtue of thethe factfact that it, contrary to all other positions involved,involved, takestakes intointo account the fact thatthat the behavior alone of persons with HIV does not suffice - within thethe context of the relevant transmission routesroutes of AIDS - inin order toto occasion a danger of infectioninfection transmissiontransmission:: thethe participation of thethe other, allegedly endangered person isis also necessarynecessary.. This participation isis necessary to establish the the routeroute of transmissiontransmission:: i.ei. e.,., the commission of penetrating sexual intercourseintercourse without aa condomcondom,, or the mutual use of a hypodermic needle not verified to be sterile, inin the IVIV application of drugsdrugs.. InIn his study of thethe decision of thethe Bavarian Administrative Court concerning thethe admissibility of measures of interventionintervention based on epidemic lawlaw which are

105105 instituted against a person suspected of being infected, Seewald furthermore points out a number of inaccuraciesinaccuracies inin the decision of the court: shortcomings which in fact admit doubt asäs to the sustainability of this decision.dedsion. 19 This argumentation isis not entirely conclusive, even though it isis correctly based on the fact that the danger of transmission - insofarinsofar at least asäs itit involves the transmission paths of sexual intercourseintercourse or IV drug consumption -- cannot arise without the correspondingly endangering participationpartidpation of the "endangered" person, who must commit the same violations against "safety standards."Standards. " German law dealing with the right to avert danger does not take into account the concept of participatorypartidpatory culpability, or itsits equivalent, to the extent that this concept has extensive significance inin civil law.law. The one-sided shift of blame - be it ever so unpractical and "unjust" according to common sense - may be said to be extensively characteristic for law dealing with police and regulatory measuresmeasures.. After all, the matter involvedinvolved here isis lessless that of arriving at a reasonable - i.ei. e.,., "just" - compensation of interests,interests, than itit isis a matter of achieving quick results inin the sense of warding off danger. Results which are appropriate asäs well asäs sustainable within the context of prevailing jurisprudence can be obtained only by means of exactexart and non­non- prejudiced examination of commensurability on the basis of administrative lawlaw.. Determination of the appropriateness of a measure attains central im­im- portance in his context, if the legallegal intentsintents asäs established inin Section 10 of the German Federal ActArt for the Control of Epidemics are carefully examinedexamined.. InIn accordance therewith, the required - and, for that reason, also appropriate -- measures must be implemented in order to avert danger to the health of the individual and of society (Section(Sertion 10, Paragraph 1 of the German Federal ActArt for the Control of Epidemics). It is no wonder that thesethese two cases of legallegal intentintent - i.ei. e.,., preclusion of danger to the individual and to society - may wellweil come intointo conflict with each other in certain situations. InIn such situations, careful deliberation must take place asäs to which objects of legallegal protection are endangered, and to what degree of intensity. There isis neither a fundamental prerogative inin favor of so­so- ciety - despite regularregulär assertions to this effect - nor isis there such a prerogative in favor of the individual and his rights. If, however, the rights inin jeopardy are essentially equivalent, efforts taken toward protection of the majority of society must be considered to enjoy priority even though a deficit of protection may result for individualindividual cases. Government measures which might protect individualindividual persons from AIDS, but which would thwart an inherentlyinherently conclusive and effective concept of preven­preven- tion, could not therefore be legallylegally admissible - unless a case of obligation to render aid is involved in accordance with Section 323c of the German Criminal Code. Most of the proposed or demanded measures calling for government­government- enforced mandatory action - such asäs mass testing of so-called high-risk groups -legally- legally fail owing to their deficiency of appropriateness. The German Federal ActArt for the Control of Epidemics also stipulates that no measures can be legallylegally admissible if they attempt to circumvent by means of "drag"dragline line research" the express renunciation by the legislaturelegislature of the requirement to report diseases in accordance with Section 3 of the German Federal Act for the Control of

106 EpidemicsEpidemics -- andand suchsuch circumventioncircumvention isis preciselyprecisely thethe casecase inin thethe attemptattempt toto enforceenforce mandatorymandatory teststests forfor HIVHIV antibodies antibodies amongamong certaincertain sectorssectors ofof society.society. InIn thethe finalfinal analysis,analysis, mandatorymandatory HIVHIV tests,tests, andand encroachmentencroachment uponupon thethe rightsrights ofof aa citizencitizen basedbased onon suchsuch tests,tests, dodo notnot äsas aa rulerule passpass thethe testtest ofof com-com­ mensurability.mensurability. CarefulCareful deliberationdeliberation mustmust likewiselikewise taketake placeplace ofof protectedprotected rightsrights inin thethe casecase ofof verificationverification ofof commensurabilitycommensurability inin aa narrower sense:sense: inin thisthis context,context, betweenbetween rightsrights toto lifelife andand health äsas theythey areare legallylegally protected,protected, andand rightsrights whichwhich maymay be consequentlyconsequently restrictedrestricted -- inin thisthis case,case, thosethose entailingentailing thethe conceptsconcepts ofof freedomfreedom andand self-determination.self-determination. ItIt must be takentaken intointo considerationconsideration inin thisthis connection thatthat extensivelyextensively organized informativeinformative and educativeeducative campaignscampaigns have already provided thethe general public with thethe possibility ofof self-protectionself-protection against HIV infection.infection. To thisthis extent, more ri-ri­ gorous measures are neither necessary nor are theythey commensurable, inin lightlight of thethe extremely abstrartabstract danger involved. Public health officials are allowed toto encroach upon thethe rights of citizens to avert a danger only in cases which can be specifically described and in which an immediateimmediate and present danger exists forfor an endangered person who is not able to influence such a danger by his or her own actions. Even in such cases, the obligation to initiate action exists only insofar äsas that nothing of the stated nature oppose consideration of the opportunity to be gained for society in general. Even though the Bavarian Administrative Court has in individual cases upheld2upheld" 1 the legality of measures taken in accordance with the so-called Bavarian Catalog of Measures (20 and 67), grave reservations must therefore be lodged against the admissibility of these measuresmeasures2222.. A particularly disturbing example of this nature may be found in the practice of a number of German Federal States which have attempted to persuade asylum applicants to toleratetolerate an HIV antibody test,test, inin thethe context of action taken on the basis of thethe German Law forfor Acceleration of Asylum Pro­Pro- cedures. Authorities threatenthreaten such candidates with deportation before theirtheir asylum application isis decided, inin thethe event thatthat theythey refuserefuse theirtheir consent toto thethe HIV test. test. Even ifif thethe requestrequest toto taketake thethe testtest were justified,justified, itsits combinationcombination with substantive asylum lawlaw -- and thethe current practice amounts toto nothing other thanthan suchsuch a combination, sincesince thethe chancechance forfor anan asylum-candidateasylum-candidate toto have his or her application approvedapproved isis significantlysignificantly impairedimpaired onceonce thethe ap­ap- plicant has been deported -- constitutesconstitutes anan offenseoffense onon thethe partpart ofof thethe authorities:authorities: itit atat thethe veryvery leastleast fulfillsfulfills thethe conditionsconditions forfor duressduress underunder SectionSection 240240 ofof thethe GermanGerman CriminalCriminal Code,Code, ifif notnot forfor assaultassault accordingaccording toto SectionSection 241241 inin conjunctionconjunction with SectionSection 234a234a ofof thethe CodeCode (defining(defining thethe offenseoffense ofof abduction).abduction). Entirely Entirely apart apart from from commission commission of of these these offenses, offenses, the the residence residence of of asylum-seekersasylum-seekers whowho havehave notnot beenbeen HIV-testedHIV-tested does does notnot representrepresent aa dangerdanger whichwhich could could justifyjustify encroachment encroachment upon upon the the rightsrights of of this this sector sector of of society society to to thethe extent extent as äs grievously grievously as äs indicated indicated in in the the above above - - especiallyespecially since since there there is is as äs yetyet no no sign sign of of a a convincingconvincing concept concept of of prophylaxis prophylaxis with with regard regard to to HIV-positive HIV-positive asylumasylum applicants.applicants.

107107 Work of the Official Investigating Committee of the German Bundestag on AIDS (AIDS Enquete-Kommission)

Bavaria Versus the Rest of the German Federal Republic

In May of 19871987,, the German Bundestag, upon being so commissioned by all represented partiesparties,, organized the Official InvestigatingInvestigating Committee of the German Bundestag on AIDSAIDS,, for investigationinvestigation of "The Dangers of AIDS and EffectEffectiveive Means to Restrain iitsts SpreadSpread.."" The committee was specifically com­com- missioned to prepare proposals for action to be submitted to the parliamentparliament.. Of the eight extra-parliamentary members of the commissioncommission,, three came from the University of Munich alonealone:: a fact which ensured weighty repre­repre- sentation of the so-called Bavarian Line i.ei. e.,., of prophylactic policy based on epidemic control measures of mandatory naturenature.. Despite this influenceinfluence,, the reports of the AIDS committee contained no recommendation for new laws or any other proposals which entailed mass testing of the entire population or of even only certain sectors of the populationpopulation.. Instead, the AIDS committee issuedissued an interiminterim report on 1616June June 1988 which supported the government inin itsits already existing concept of informativeinformative and educative efforts. The committee recommended the HIV antibody antibodytest test only for the followingfollowing::

•. In cases of stable partnerships, asäs a survey test, or inin cases of nonnonpro- pro­ miscuous lifestyles •. For women who wish to have children and for whom an HIV risk exists •. In conjunction with examinations to detect problems during pregnancy, iinn cases in which HIV risk existsexists..23

The AIDS committee expressly emphasized the necessity of relieving those sectors of society most severely afflicted by AIDS i.e.,i. e., male homosexuals, IVIV drug addictsaddicts,, and prostitutes, from the pressure imposedimposed by measures of pro­pro- secutsecutionion implemented by the governmentgovernment.. The committee made the following recommendations:

•. Deletion of Section 175 from the German Criminal Code, and assessment of the possibility of substitution insteadinstead of a uniform protective stipulation for male and female youth inin the German Penal Law on Sexual OffensesOffenses2424 •. Improvement of the situationSituation of professProfessionalional prostitutes through elimi­elimi- nation of social and legal discriminationdiscrimination2525 •. Revocation of the practice of considering the possession of sterile dispos­dispos- able syringes by drug addicts to be proof of the possession of narcotics. 26

These recommendations represented a definitely clear repudiation of those approaches which advocated a policy of prosecutprosecutionion and social rejection. FurthermoreFurthermore,, public discussion concerning AIDS calmed after the two reports of the committee were published.

108 InIn thethe secondsecond volumevolume ofof itsits report,report, thethe finalfinal publicationpublication inin MayMay ofof 1990,1990, thethe committeecommittee elaboratedelaborated onon itsits followingfollowing finding:finding: that,that, inin accordanceaccordance withwith judicialjudicial experienceexperience gainedgained concerningconcerning thethe influenceinfluence onon human behavior byby legallegal norms,norms, specificspecific individualindividual measures -- i.i.ee.,., thosethose whichwhich attemptattempt toto elicitelicit detectabledetectable behaviorbehavior only fromfrom illill oror infectedinfected individuals,individuals, andand not fromfrom societysociety äsas aa wholewhole -- must be assessedassessed äsas ineffectiveineffective inin thethe contextcontext of generalgeneral epidemicepidemic control.contro!.27" TheThe reportreport also emphasized thatthat lawlaw isis expected toto encourage thethe formationformation ofof moral Standards,standards, whereby thethe responsibility toto refrainrefrain fromfrom discriminatory actionaction against those involvedinvolved must be placed on an equal rankrank with thethe responsibilityresponsibility toto prevent behavior which encourages thethe spread of infection.infection .2828 By thethe end of itsits study, however, thethe committee was not able toto arrive at aa jointlyjointly held viewpoint concerning thethe employment of compulsory measures. The finalfinal reportreport expressly presented the various and divergent opinions which had come toto lightlight during deliberations of the committee, and which centered on thethe question äsas toto what extent epidemic-control intervention maymayor or must be implemented.implemented .2929 By the time the committee report had been published,published, however, the respective positions on prophylactic strategies had become so firmly established that the committee was no langerlonger able to contribute noteworthy Impulsesimpulses in this regard.regard. Considerable uncertainty appears to exist on this question only in the newly admitted Federal States of Germany.Germany.

Rights of self-determination and tests for HIV antibodies

The HIV test inin hospitals and inin doctors' officesOffices

The procedures for conducting teststests for asylum applicants asäs described above isis only the tip of a huge iceberg.iceberg. To be sure, sure, success has been achieved, for thethe time being, inin neutralizing thethe callcall for compulsory measures and mass testingtesting by public health officesOffices.. Nevertheless, thethe German judicialjudicial systemSystem asäs wellweil asäs public health policy have both failedfailed inin thethe matter of defending the the patient's rightright of selfseif determination against demands -- arising above all fromfrom thethe medical side -- forfor subjection toto HIV antibody teststests.. With firmlyfirmly established judicialjudicial precedentsprecedents which hashas developeddeveloped overaver decades regardingregarding thethe requirementrequirement forfor thethe patientpatient toto consentconsent toto medical procedures for for therapeutictherapeutic or or diagnosticdiagnostic purposes, purposes, the the legallegal situationSituation by by now now should byby allall rightsrights bebe perfectlyperfectly clearclear..3D30 Now Now,, forfor whateverwhatever reason,reason, itit appearsappears thatthat allall of thisthis nono longerlonger appliesapplies forfor thethe patientpatient whowho isis expected expected toto taketake anan HIVHIV antibodyantibodytest. test. DespiteDespite thethe significantsignificant consequencesconsequences andand risksrisks ofof psychicpsychic andand socialsocial naturenature whichwhich areare associatedassociated withwith presentationpresentation toto aa patientpatient ofof aa positivepositive HIVHIV testtest resultresult3'31 -- consequencesconsequences whichwhich maymay extendextend toto specificspecific alterationsalterations inin thethe legallegal 2 statusstatus ofof thethe patientpatient concernedconcerned332 -- aa numbernumber ofof authorsauthors dodo notnot considerconsider itit legallylegally necessary necessary for for the the patient patient to to expresslyexpressly consent consent to to the the taking taking of of a a bloodblood

109109 sample for an HIV antibody test. These authors proceed on the basis of the still valid assumption that, inin the case of a "conventional" blood test - which does not include an HIV antibody test - the patient's consent to venipuncture for taking of a blood sample represents his or her impliedimplied consent for the performance of any other type of laboratorylaboratory testtest.. The authors reach the same conclusion with respect to the patient's consent, however, if - even without appropriate notification by the physician - the intentionIntention exists to perform an HIVHIVantibodytest. antibody test. The facility is astonishing here with which the proponents of such a laxlax attitude toward actionsartions associated with the right of self-determination have disregarded principles established over longlang years of judicialJudicial precedent.33precedent. 33 On the one hand, they assert that matters of practical or economic concern inin everyday work in a hospital environment justify action inin setting aside the elementary rights of the patient. Where these grounds do not suffice, such proponents resort to presumptions and allegations concerning the actual intentions of the patient: e.g.,e. g., that a patient's request to have a compre­compre- hensive precautionary health checkup will routinely and automatically author­author- ize and obligate the physician to perform the HIV antibody testtest..34 Even dogmatic constructions, furthermore, are employed to avert any cul­cul- pability on the part of the medical staff inin cases of HIV tests which have been secretly performed. It did not take long,lang, for example, for wordward to get around among medical staff concerning prevalent judicial opinion inin such cases: i.e.,i. e., that culpable bodily harmhärm owing to lacklack of the patient's consent for an HIV test has not taken place inin the event the decision to perform this test isis made only after the blood sample isis taken. Or that intent to commit an offense which is formed after the deed isis committed (dolus subsequens) cannot be legally associated with the previous deed. 35 This reasoning continues by claiming that even an intent which plans to have an HIV test conducted along with other laboratory analysis, which isis formed before the taking of the blood sample, and which is not previously revealed to the patient, does not contribute to the commission of a punishable offense, since explanation to the patient on the blood test to be conducted inin the laboratorylaboratory isis not related to protected rights [36], and isis therefore superfluous. All of these viewpoints call attention to an extraordinary judicial divergence of opinion asäs compared to viewpoints proposed inin other publications on the requirement to inform and to gain the patient's consent inin cases inin which HIV and AIDS are not involved. Bollinger,Böllinger, for example, evaluates this phenomenon not asäs a coincidental development, but asäs a contribution to "systematic, super­super- fluousfluoussocial social rejection ofofthose those infected with HIV. "37 As a result of this unfortunate development, attention cannot be often enough called to the relevant legallegal view summarized inin the following concerning the requirements for valid consent to have a blood sample taken for an HIV antibody test: To begin, an indication isis required inin thethe event that the patient herself or himself does not expressly wish the HIV test. Protection of the staff in the hospital, or prevention ofoftransmission transmission at all, does not represent such an indi­indi- cation, since staff knowledge of the HIV antibody status of a patient repres­repres- ents no additional protection for the staff under the assumption that conven-

110no tionaltional hygienic rulesrules are consistently observed (already an essential prere-prere­ quisite inin a hospital).hospital). According toto thethe results of an American study, assump-assump ­ tiontion should even be made of thethe very contrary.contrary.3838 In addition toto thethe diagnostic functionfunction of thethe HIV test in thethe event of specific evidence pointing toto an acquired immunodefidencyimmunodeficiency syndrome (AIDS), the following may be considered äsas indicationsindications inin thisthis sense:sense:

.• The desire of a couple to have children, if there exists an increased pro-pro­ bability thatthat one partner has an HIV infection .• The desire of an expectantexpectant mother to learn the probability with which the expected child will develop immunodeficiency after delivery.delivery.

In all cases of such valid indications, however, the essence involves the interests of the patients or their partners. In the event, on the other hand, that the alleged interests of outside third parties are incorporated into the indication, this äsas a rule creates an irrelevant precondition for the HIV test, with the result that the consent of the patient is invalid.invalid. Furthermore, the patient must be informed of the purpose of the HIV test­test - a purpose which may not be irrational. Although this statementStatement may be banal, it is nevertheless essential, since it is not rare that the only consequence of a positive HIV test result is the recommendation provided to the patient with respect to his or her behaviorbehavior:: ii..e., that he or she not take part in so-called un­un- protected sexual intercourse. In the case of sexuality outside a permanent relationship, asäs well asäs within a so-called open relationship, this isis a type of behavior which serves the purpose of preventing infection. The diagnostic HIV test, in addition, must likewiselikewise contribute to a decision on modes of therapy or behavior which would be different for a negative test result than for positive findingsfindings.. FinallyFinally,, the patient must receivereceive comprehensive informationinformation on thethe side effectsefferts and the risks of thethe medical actionaction:: ii..e., thethe HIV antibody tests inin this context. If this aspect isis frequentlyfrequently also neglected inin thethe context of legallegal discussion, this shortcoming lieslies inin thethe certainly not entirely unconscious narrowing of viewpoint to thethe venipuncture procedureprocedure.. This restrictedrestricted view­view- point shuts out thethe entire problem complex associated with disclosure of thethe diagnose to thethe patient, and with thethe followingfollowing reactionreaction by thethe patientpatient.. ItIt isis only by viewing thethe entire processprocess with blinders of thisthis nature thatthat itit isis possible to overlook thethe grave risksrisks followingfollowing disclosure of a positive testtest resultresult to thethe patient: thethe increasedincreased riskrisk of suicide; the the possibility of depression; thethe danger of social rejection,rejection, significantly higher asäs itit isis forfor AIDS thanthan forfor com­com- parable diseases; asäs wellweil asäs thethe consequencesconsequences forfor thethe legallegal statusstatus of thethe patient, who fromfrom thisthis point point onward will will bebe unable unable to to conclude private private healthhealth or lifelife insuranceinsurance policiespolicies.. InIn a pioneering decisiondecision alreadyalready inin 1987,1987, thethe State'sState's AttorneyAttorney ofof Mainz,Mainz, Germany, confirmed allall ofof thethe guidelinesguidelines summarizedsummarized aboveabove -- asäs wellwell asäs the the legallegal consequencesconsequences ofof disregarddisregard ofof thesethese guidelines:guidelines: i.ei. e.,., withwith confirmationconfirmation ofof thethe basicbasic liabilityliability ofof punishmentpunishment forfor bodilybodily harmhärm forfor illegallyillegally takingtaking aa bloodblood samplesample..3939 The The rulingruling confirmedconfirmed thatthat thethe takingtaking ofof aa bloodblood samplesample forfor purposepurpose ofof differential diagnosis,diagnosis, with with followingfollowing useuse of of thethe bloodblood forfor anan HIVHIV antibody antibody

111111 test, represents only relative slight encroachment upon the patient's bodily integrity - if such an actart be considered merely inin itsits isolatedisolated sense. Never­Never- theless - so continues the reasoning of the Mainz ruling - the consequences of positive results (also including the indirectindirect results) must be considered to be of grave significance for the patient involvedinvolved - with severe enough results arising alone from the order to take the blood for purpose of the HIV test. The directive to have the sample taken already places a stigma on the patient of belonging to the so-called high-risk groups which includeinclude drug addicts, homosexuals, and prostitutes. This ruling even views the disclosure of aa positive test result to be able to suddenly change the lifelife of the patient in­in- volved in an existentially threatening mannermanner.. It furthermore leadsleads in certain cases to extremely acute psychic situations which can escalate to the point of suicide danger.danger. The patient would in addition experience asäs a matter of course considerable social consequencesconsequences,, either inin the profession he or she intendedintended to enterenter,, or in the profession already practicedprarticed.. The patient would thereby be subjected to social Isolationisolation and stigmatization to a degree eexperiencedxperienced with no other diseasedisease.. In the opinion of the StateState's's AttorneyAttorney,, these circumstances dictate the express provisionProvision of informationInformation to the patpatient,ient, with necessity of appropriate consent granted to take the blood samplesample..4400 Although the actual procedures with such blood samples frequently take place in an entirely different fashion, this ruling illustratesillustrates the extraordinarily problematic relationship which basically exists between physician and patient involved herehere:: one iinn which the physician routinely issuesissues appeals for the patient's confidenceconfidence,, and inin which the patient in turn isis frequently robbed of his right to self-determination.

AIDS and criminal law

From Munich and Kempten, through Nuremberg, and finally to Karlsruhe

While the Official Investigating Committee ofofthe the German Bundestag on AIDS was still deliberating the exemplary action of lawlaw on human behavior and society, the criminal judiciary inin Germany had already set itsits course. After lower-court decisions had been rendered inin KemptenKempten4 411 and in MunichMunich, , the Regional Court of Nuremberg-FOrthNuremberg-Fürth considered the case of an HIV-positive American. The American had allegedly taken part several times in so-called unprotected sexual intercourse inin a gay sauna - without, however, the exist­exist- ence of verification that he was responsible for HIV transmissiontransmission.. InIn one case, confirmation was provided that transmission had not taken placeplace.. InIn another case examined by the court, the sexual partner could not be located,located, and nothing could therefore be learnedlearned of his subsequent fate. The American had been persistently instructed by a physician that he, asäs "a virus carrier,"carrier, " would be allowed to practice anal intercourseintercourse only with a con­con- dom.dorn. On the basis of Informationinformation received from Dutch brochures, the AmeAme--

112 rican chose to practice the method of coitus interruptusinterruptus - admittedly not an optimal mode, but at leastleast one which somewhat reduced the danger of trans­trans- mission. This case had become a topic of treatment inin legal literature even before rendering of decision by the court of first instance.instance. Rolf Dietrich Herzberg, lecturer in criminal lawlaw inin Bochum, Germany, had already expressed his views on this topic, and had personally recommended that such an action be con­con- sidered worthy of punishment by virtue of itsits representing grievous bodily harm.härm. Herzberg saw inin such an approach the opportunity to retard the proliferation of AIDSAIDS.. In the prevailing concept of criminal intentintent asäs shared by the body of German legallegal precedents, however, he saw no possibility for realizing this approach. Herzberg reasoned that, if charges were nonetheless broughtbroughtagainstthe against the perpetrator for grievous bodily harmhärm-äs - as was actuallyactuallythe the case in the Nuremberg proceedings - this would be possible only by circumventiondrcumvention of received precepts of German criminal jurisprudence.Jurisprudence. InIn order for an offense to embody conditional intent,intent, the precedents of jurisprudence require the existence of ""...... the acquiescing inin or taking seriously of the risk ..."... " on the part of the perpetrator, ""...... in addition to an understanding of the forbidden and unshielded consequential danger ...... " - i.e.,i. e., the danger of virus transmission in this case."case. 42 Herzberg did not believe that such an eventuality would successfully prevail inin German jurisprudence. In what practically amounts to emotionally touching helplessness, Herzberg recommends concealing this result - unsatisfying asäs itit isis for him asäs wellweil asäs for many others - from the HIV-infected parties involved,involved, inin order to preserve at least a small remnant of belief inin the alleged AIDS prophylactic effect of criminal law.43 The courts, however, have entertained fewer scruplesscruples.. After the Nuremberg Regional Court sentenced the accused to a prison term of two years for attempted grievous bodily harm,härm, the German Federal Court of Justice - inin aa leapfrog appeal - upheld this conviction, thereby and inin fact ignoringignoring the re­re- ceived precepts of German jurisprudence concerning conditional intent.intent. The Federal Court of Justice ruled that the perpetrator had acted with intentintent to harm,härm, in accordance with the following: "..." ... by virtue of the fact that he recognizes the onset of the consequences entailed by the offense asäs feasible and not entirely remote, and thereby acquiesces in such a manner that he tacitly accepts the consequences of an offense, or that he at least accedes to such consequences inin order to achieve the desired objective, much asäs the perpetrator may not actively desire the onset of such consequences inin and of themselves; conscious negligence, on the other hand, is involved if the perpetrator does not concur with the conse­conse- quences of an offense which he has recognized asäs possible, and if he seriously - not only vaguely - trusts that the consequences of the offense will not materializematerialize. . "44 Even the uncontested protestation of the accused - i.e.,i. e., that he avoided ejaculation in his partner for purposes of reducing risk - failed to persuade the federal judges to concede to the perpetrator that he had not concurred with the consequences of the offense inin the form of virus transmissiontransmission.. InIn a series of commentary published on this ruling - includingincluding commentary by authors who

113 werewere basicallybasically inin agreementagreement withwith thethe rulingruling -- astonishmentastonishment waswas registeredregistered averover thethe deviationdeviation fromfrom precedentprecedent whichwhich waswas evidencedevidenced by thethe Federal CourtCourt ofof JusticeJustice inin thisthis ruling.ruling.454s TheThe FederalFederal CourtCourt ofof JusticeJustice likewiselikewise ignoredignored thethe position -- äsas representedrepresented byby thethe defensedefense and,and, inin particular, by GermanGerman Federal AttorneyAttorney GeneralGeneral Manfred BrunsBruns inin variousvarious presentationspresentations previously published -- thatthat thethe sexualsexual Partnerspartners ofof thethe accusedaccused had actedacted at theirtheir ownown risk,risk, by virtue of agreeing toto go alongalong withwith unprotectedunprotected sexualsexual intercourseintercourse inin a gay sauna.sauna. Even Wilfried Bottke -- inin detaileddetailed knowledgeknowledge of gay sexualsexual practices which isis astonishing forfor thethe profession ofof lecturerlecturer inin criminal lawlaw -- realized that,that, at leastleast inin "dark"dark rooms,rooms,"" any participant must assume thatthat his sexualsexual partner may well be HIV positive.positive.4646 For thisthis reason,reason, Bruns concentrated on thethe factfact thatthat -- inin accordance with our jurisprudencejurisprudence - suicide and self-inflicted injuryinjury committed inten-inten­ tionallytionally under thethe perpetrator's own responsibility, or committed with tacit acquiescence, are not punishable offenses.offensesY 47 This position therefore sees that if a person engages inin high-risk behavior - i.i.e.,e., äsas is represented by so-called unprotected sexual intercourseintercourse in spur-of-the-moment sexual contact, or in the very frequently occurring promiscuous situations in gay saunas - he acquiesces in the risks of self-injury involved in HIV infection, in view of the more desirable advantages. This standpoint holds that such a person makes use of a "tool" - namely, the HIV-infectedHIV-inferted partner - who therefore only participates in the nonculpable, attempted actart of self-injury, and who must therefore also be considered to have acted in a nonculpable mannermanner.. The Court held, on the other hand - and in oblivion to any form of reason entailing AIDS prophylaxis - that the already infected partner possessed"possessed "... " . aa higher degree of specialized knowledge ..."."" concerning the dangerous situa­situa- tion involved. The ruling stated that the already infectedinfected partner is accordingly better able to assess the risk concerned, and isis therefore under the obligation to informinform his noninfected partner of his infection,infection, or to employ protective means.4means. 48B The elaboration provided by thethe Criminal Division of thethe German Federal Court of Justice - entirely discriminating asäs itit was inin comparison toto thethe rulingruling of the court of first instance,instance, asäs well asäs inin itsits rejectionrejection of thethe intentionsintentions toto achieve general prophylaxis and public-health action asäs entertained by thethe Regional Court -- thereforetherefore provided a hypocritical impression:impression: indeed,indeed, even thethe federalfederal judgesjudges did not remainremain unaffected by thethe general atmosphere of hysteria which prevailed at thatthat timetime.. ByBy pulling out all thethe stops,stops, thethe high court arrived at thethe fabricationfabrication ofof culpabilityculpability ofcrf unprotectedunprotected sexualsexual inter­inter- coursecourse -- but theythey also reducedreduced thethe perpetrator'sperpetrator's sentencesentence toto 1818 months.months. ItIt isis undisputed among criminologists,criminologists, however,however, thatthat -- atat leastleast amongamong thosethose sectorssectors of thethe populationpopulation whowho abideabide byby the the lawlaw - - itit isis notnot soso muchmuch thethe severityseverity of a sentencesentence which actsacts toto deterdeter crime,crime, butbut -- ifif atat allall -- thethe notnot insignificantinsignificant probabilityprobability of of prosecutionprosecution and and sentencing. sentencing. InIn anyany case,case, GermanGerman AIDS-HilfeAIDS-Hilfe organizations,organizations, AIDSAIDS counselingcounseling centers,centers, asäs wellweil asäs allall thosethose notnot merelymerely theoreticallytheoretically involvedinvolved withwith AIDSAIDS prevention,prevention, experiencedexperienced this this rulingruling ofof thethe FederalFederal CourtCourt ofof JusticeJustice inin thethe sensesense of of aa ca­ca- tastrophe.tastrophe. TheThe courtcourt decreedecree moremore firmlyfirmly establishedestablished thethe previousprevious one-sidedone-sided shiftshift of of responsibilityresponsibility for for the the proliferation proliferation of of AIDS AIDS toto personspersons with with HIVHIV -- andand

114114 contributed to the entirely counterproductive effect of giving the rest of the population a false sense of being absolved from any such responsibility. Entirely apart from these aspects, however, it became clear that counseling sessions would in the future be much more difficult to conductconduct,, by virtue of the fact that those seeking advice would be forced to ddiscussiscuss crimcriminallyinally punishable forms of behaviorbehavior.. The fear was indeed well founded that the attempt was being made to achieve by criminal justice what had previously failed with the instrumentsInstruments of epidemic law: the systematic prosecution and social isolationisolation of persons with HIV. FortunatelyFortunately,, the following developments did not entirely bear out these fears. To be suresure,, a number of convictions for attempts to commit grievous bodily harmhärm asäs a result of so-called unprotected sexual intercourseintercourse did inin fact take place immediately following this ruling by the German Federal Court of JusticeJustice.. At the same timetime,, thoughthough,, the fearfully expected wave of denuncia­denuncia- tion and prosecution did not materializematerialize.. Additional high-court decisions overturned individual attempts by Bavarian criminal justice to extend culpa­culpa- bility even furtherfurther:: ii..e., to merely the ""...... unreasonable request of the carrier of HIV virus ...... " to engage in sexual intercourseintercourse with another person without protective means"means "...... while concealing his infectioninfection ...... ""4949 Despite a certain relief, long-lastinglong-lasting anxiety among persons with HIVHIV,, asäs wellweil asäs a collective scapegoat feeling, still remain - the effect which was, to be sure, intended by its instigatorsinstigators..

The legal situationSituation of persons with HIV and AIDS inin everyday life

Fear of losing work

Experience has shown that fears of persons with HIV have to a great degree, and not without grounds, been primarily concentrated on losing their workwork.. Even many employers with good intentionsintentions - out of consideration for the irrational fears of their customers and business associates - have seriously considered whether or not they should continue to employ HIV-positive staff at all, and have even wondered the same about members of so-called high-risk groups. In Berlin, the Labor Court has ruled on a case in which an employee had informed the owner of his companyCompany that he was HIV-infected. The owner informed other members of the staff, who immediatelyimmediately demanded the dis­dis- missal of the infected colleague. The other staff lentlent weight to their demands by threatening to quit themselves if the illill employee were not firedfired.. The employer then dismissed the employee, but the Berlin Labor Court declared his dismissal ineffective.ineffective. The court justified itsits ruling by citing longlang years of precedents inin German laborlabor adjuciation, inin which such so-called "coercion dismissals" are admissible only if the coercion situationSituation has not aris-

115 en fromfrom thethe side of thethe employer himself. In thisthis case, thethe pressure had arisen precisely fromfrom thethe employer:employer: thethe Companycompany owner had -- without necessity or any other logicallogical justificationjustification -- informedinformed thethe staff of thethe HIV infectioninfection of theirtheir colleague.colleague. The court additionally ruled thatthat it had properly been the responsibility of thethe employer toto protect his employee fromfrom unjustified de-de­ mands forfor dismissal, äsas was here the case with the employee under attack.attack.5050 The judgesjudges of thethe Labor Court set a tönetone of considerable significance here: thatthat at leastleast theythey had not considered departing from established judidaljudicial precedent inin view of the development of AIDS.AIDS. This fortunate tendency has continued toto develop -- whereby, to be sure,sure, special-protection rights for HHIV­ IV- infectedinfected employees have not conversely been established.established. An employee with HIV-related disorders, for example,example, can lose his Jobjob in the same manner äsas an employee suffering from any other type of disease, if he stays away from work frequently or for long periods äsas a result of his illness.illness.51 The Regional Court of Brunswick, Germany, ruled in 1989 that, if a Companycompany dortordoctor informs the employer of the HIV infection of one of the employees, the physician is guilty of violating Professionalprofessional secrecy and must pay damages to the employee who has suffered a 10ssloss.Y" In this particular case, prosecution did not take place because the statutory period for filing suit had lapsedlapsed.. At the beginning of 1988;1988, Werner Hinrichs published a much-respected contribution to the objectification of the working atmosphere inin the corporate sphere, and to the clarification of numerous legal questions inin the interestsinterestsofthosesufferingfrom of those suffering from HIVHIVandAIDS. and AIDS . His articlearticlewas was entitled "Protect The Healthy But Do Not IsolateIsolate The IllIII:: Aspects Of Aids In Labor Law,"Law, " and was published for the German Trade Union Federation. Hinrichs pointed out that there is generally no justified interestinterest on the part of the employer to de­de- termine from Jobjob applicants whether they are HIV positive - neither throughthrough questioning during Jobjob interviews,interviews, nor by HIV tests at checkups performed before hiringhiring.. It isis furthermore allowed for thethe applicant to replyreply falselyfalsely when questioned asäs to her or his HIV status, without legallylegally suffering negative consequencesconsequences.. There isis no legallegal resort,resort, on thethe other hand, ifif thethe jobJob applicant is required beforehand toto present a negative HIV test reportreport toto a prospective employeremployer.. Hinrichs therefore especially emphasized thethe responsibilityresponsibility of companyCompany Works Councils to protect applicants inin such cases. 5353

The situationSituation inin hospitals

Whereas itit isis by now no longerlanger a disputed factfact that,that, inin almost all professionalProfessional fieldsfields,, therethere isis no danger of HIVHIVtransmission transmission at work, controversycontroversy stillstill prevailsprevails inin thethe hospital area asäs to to whichwhich consequencesconsequences shouldshould bebe drawndrawn on thethe basisbasis of alleged or actual danger ofof transmissiontransmission.. ThisThis situationSituation hashas ledled toto considerableconsiderable anxiety among hospital staffstaff andand amongamong patients:patients: HIV-positiveHIV-positive patientspatients asäs well well asäs thosethose not testedtested or who areare HIVHIV negativenegative.. ThereThere havehave untiluntil nownow beenbeen nono court rulingsrulings on thisthis pointpoint.. InIn thethe above-mentionedabove-mentioned casecase involvinginvolving violationviolation ofof professionalProfessional secrecysecrecy -- which tooktook placeplace inin aa hospitalhospital -- thethe RegionalRegional CourtCourt de­de- clinedclined toto rulerule inin anyany mannermanner whatsoeverwhatsoever onon thethe questionquestion ofof whetherwhether thethe hospitalhospital managementmanagement asäs employer employer possiblypossibly mightmight bebe ableable toto havehave aa justifiedjustified

116116 interest in knowing the HIV status of one of its staff.staff. The German Association of Social-lnsuranceSocial-Insurance Underwriters for Industrial Occupational Accidents (Berufs-(Berufs­ genossenschaft), in its department responsible for public health and welfare Services,services, has listed AIDS in its catalog of occupational diseases, äsas occupational disease no.no. 3101, in accordance with Annex 1 of the Ordnance on Occupa-Occupa­ tional Diseases (BeKV). The following was contained in an official notification issued by the Association of Social-lnsuranceSocial-Insurance Underwriters for Industrial Occupational Accidents in 1988: "In the case of a verified HIV infection, and of professionally related contact with blood, the probability of causal connection must äsas a rule be affirmed, except for cases in which the probability of infection outside the profession is so great that, for this reason, an occupational infection cannot be considered äsas sufficiently probable. "54 This published notice involves a legal formulation which merely creates operative facts to the benefit of parties insured in the German national accident-insurance program, which elements allow in turn the insured party to lodge insurance claims.claims. As a result, this formulation by no means provides a Statementstatement on the probability of HIV transmission in the area of hospital work. Until now, the cases of verified HIV transmission in hospital work were either the result of disregard of hygiene rules, or took place asäs a result of occurrences with the nature of accidents, such that even knowledge of the positive serostatus of the patient would not have enabled prevention of infection.infection. Only one case is known of transmission from medical staff to patients:patients: in the frequently publicized case of the dentist in the United States who had infected patients with HIV asäs a result of flagrant disregard of the rules of hygiene. The appeals for systematic HIV antibody tests to be con­con- ducted among medical staff, or for hospital patients, are all therefore devoid of logically reasonable grounds. Or, they assume that hygiene rules belonging to the basic principles of the medical profession are regularly being disregardeddisregarded:: i.i.e.,e., that physicians systematically violate the fundamental rules ofoftheirprofession. their profession. The same applies to proposals leading toward requiring hospital staff or patients to inform the hospital management inin the event that they are aware of being HIV-positiveHIV-positive.. Even if a number of authors have attempted to inflateinflate this matter to the status of a legallegal obligation, such demands only signify a confession of insufficientinsufficient hygiene, and once again amount to transferringtransferring responsibility to persons suffering from HIVHIV..

HIV-positive civil servants?

Since members of the legallegal profession inin Germany are particularly closely associated with the civil service, legallegal literatureliterature has accorded a special rolerole toto discussion on the question asäs to whether applicants with HIV could be allowed to attain lifelonglifelong tenure asäs civil servants,servants, and asäs to whether an HIV test test should be required for applicants forfor civil serviceService work. Very early, AIFO authors repeatedly emphasized thatthat thethe government could not afford toto hire civil servants who would, with greater thanthan otherwise normal probability, soon

117117 become unable toto work.work. Their recommendation was to disqualify HIV-positiveHIV-positive applicants from becoming civil servants.servants.55 This position was confirmed by aa ruling of the Bavarian Administrative Court dated 9 November 1988, which was, however, accompanied by supplementary elaboration to the effect that, at the same time, the employer insofar enjoys no judgmental leeway. 56 In other words, the employer could not be forced to completely forgo appropriate testing, and could at the most be held to restrirtrestrict such screening to those applicants for whom "..." .. . according to the impression received by an examining physician, particular evidence exists which links then to member-member­ ship in one ofthe risk groups." The extent to which the Bavarian Administrative Courts were prepared, within the context of AIDS, to forsake the principles of a state governed by law is revealed in the recommendations with which the court attempted to deny the discriminating character of its proposed procedures.procedures. The court established that the question of membership in one of the risk groups could ""...... furthermore be posed in a completely general and neutral manner, without forfeiting the desired effectiveness. effectiveness."" The court continued: "If the applicants provide no answer to the questions, then the office gathering informationInformation may draw its own conclusions therefrom.therefrom.""5757 These statementsStatements represent judicial recommendations to employ assumptions gathered from reactions to veiled hints - to be used, in turn,turn, asäs the basis for procedural differentiation in the context of selections for public office - office which isis open to all on an equal basis äsas constitutionally guaranteed in Article 3333,, Section 11,II, of the German Basic Law. Significant social dimensions become evident in this question, asäs part of aa matter which involves not only the government civil service,Service, but also the entire field of labor law. The question is: to what extent in the context of tests ad­ad- ministered to Jobjob applicants are prognostic statementsStatements admissible which result not from the ascertainment of manifest diseases, but which arise from diag­diag- nostic techniques which are more and more sophisticated, increasinglyincreasingly farther oriented into the future, and possibly based at somesame point inin time on gene technology? What degree of coincidence, or whose peremptoriness will inin the future determine whether screening for jobJob applicants will be restrictedrestrirted to, say, merely tests for blood sugar or blood pressure - or whether highly sophisticated medical apparatus and laboratorylaboratory technologytechnology will be employed in diagnosis in order to guarantee that the applicant will be able to "amortize"amortize"" the costs of trainingtraining and upkeep which the employer invests?invests? Attention has appropriately been called to the fact that, inin any case, up toto 80% of the civil servants who leaveleave their jobsJobs every year inin general public administration, are granted early retirementretirement because of premature disabilities --withoutinfactAIDShaving,without in fact AIDS having, up to now, played anyanykind kind of rolerole whatsoever. 5858 In their extensive study carried out inin 1990, thethe authors Peter Lichtenberg and Werner Winkler called attention to thethe grievous constitutional-law misgivings which have arisen asäs a resultresult of Bavarian adjuciation: "Neither the protection of public administration fromfrom financialfinancial and organizational burdens, nor thethe defense fromfrom infectionsinfections inin thethe sense of Section 1 of the German Federal ActArt forfor thethe Control of Epidemics convincingly suffices asäs justificationjustification -- especially inin view of thethe factfact thatthat thethe eloquence of

118118 thethe HIV testtest isis considerably restricted inin extent when applied forfor civil-servant applicants äsas thethe minor group which theythey represent.represent."59 "59 On 27 March 1987, thethe Conference of thethe Ministers of Health of thethe German Federal States (GMK) issuedissued a policy Statementstatement against HIV teststests forfor civil-civil­ Serviceservice candidates, with justificationjustification on the basis of social considerations and of thethe devastating example such teststests in public Serviceservice would furnish for other employers.employers. As a result, Bavaria remains the only German Federal State which continues toto deny civil-service status to candidates owing to positive HIV test results conducted on a mandatory basis.

Private health and life insurance

Probability and prognosis represent essential factors in the insurance business.business . It was natural that the private health and life insurance companies reacted with particular alarm when extensive details became known on the mani-mani­ festations and effects of the HIV infection.infection. The source of alarm was not so much the expectation of increases in insurance benefits, asäs such, which the companies would be forced to paypay:: it soon became evident, indeed, that this development would for the time being proceed in a foreseeable manner. The sole important factor, rather, was for each insurance companyCompany to maintainmaintaln itsIts clienteledientele on asäs low-risk a level asäs possible in relation to its competitors. Insurance companies accordingly issued instructionsinstructions - either explicitly or implicitly - to their salesmen to become especially aware of any indicationsindications of membership in one of the "risk groups" while present inin the ambience of applicants for private health or lifelife insuranceinsurance..6o60 If an insuranceinsurance salesman visited the home of a man overaver 30 who had never married, for example, the applicant could expect that the salesman would pay special attention to any traces of feminine deportment - or that he would note thethe presence of, say, a conspicu­conspicu- ousaus collection of musical recordingsrecordings by the German singer Marianne Rosenberg: a reliable indication,indication, according toto widespread popularpopulär belief, for 6 the owner's belonging to thethe "risk group" of homosexual menmen..6'! InsuranceInsurance salesmensalesmen,, however, owing toto thethe workings of theirtheir commission system,System, are chiefly interestedinterested iinn having applicants sign an insuranceinsurance policy, and not inin preventing such a conclusion. InIn addition, theythey cannot expect to suffer any immediateimmediate disadvantage fromfrom any early or excessive benefits which theirtheir companyCompany might be forcedforced toto pay.pay. ItIt thereforetherefore appears thatthat suchsuch instructionsinstrurtions issuedissued to insuranceinsurance salesmen salesmen may be disregarded as äs minor inin consequenceconsequence.. InIn thethe end, thethe insuranceinsurance tradetrade camecame toto anan internalinternal agreement -- again, inin thethe interestinterest of uniformity inin competitioncompetition -- and issuedissued aa routineroutine policypolicy declaration to thethe followingfollowing extentextent:: inin casescases of of life-insurancelife-insurance policies over aver DM 150,000150, 000 presentation ofof negativenegative HIVHIV test test resultsresults wouldwould become aa stipulationstipulation forfor conclusionconclusion of thethe policy.policy. InIn thethe casecase of allall otherother policiespolicies inin whichwhich healthhealth factorsfactors ofof thethe insuredinsured partyparty play aa rolerole -- and thisthis appliesapplies inin thethe opinionopinion ofof insuranceinsurance companiescompanies alsoalso toto privateprivate accident-insuranceacddent-insurance policiespolicies-the - the standardStandard stipulationstipulation isis bindingbinding asäs set set forthforth inin SectionSertion 1616 ofofthe the GermanGerman ActArt onon InsuranceInsurance PoliciesPolicies (WG)(WG):: ii..ee.,., thatthatthe the insuredinsured party,party, uponupon conclusionconclusion ofof thethe policypolicy,, shallshall revealreveal toto thethe insuranceinsurance

119119 companyCompany all conditions known to the insuredinsured which are of relevance for"for "...... assumption of riskrisk.." Since the lawlaw stipulates that, inin case of doubt, those con­con- ditions shall be considered of relevance for assumption of risk which the insurance companyCompany expressly poses inin writing, all application forms now inin-­ clude questions concerning an HIV test and itsits resultsresults.. InIn the event that the ap­ap- plicant provides culpable answers to these questions - i.e.,i. e., that he or she intentionally or negligently provides false informationInformation - the insuranceinsurance com­com- pany shall be entitled to withdraw from the contract and shall not be obliged to render payment of insurance benefitsbenefits.. This legal situationSituation - which by now has been upheld inin a number of judicial 2 rulingsrulings662 - asäs wellweil asäs the consistent practice of insuranceinsurance companies not to sign policies with HIV-positHIV-positiveive applicants for health and lifelife insurance,insurance, mean that it is practically impossible for persons with HIV to provide insuranceinsurance coverage for themselves, or those closedose to them, beyond the limitslimits of government-spon­government-spon- sored social insuranceinsurance.. It isis also impossibleimpossible for them to obtain major bank cred­cred- it required for professionalProfessional or private planning, since such loans are routinely secured by life insurance specifically required for the loanloan..

Aliens in Germany with HIV: sometimes tolerated, and sometimes repatriated

The status of aliens with HIV who do not have citizenship inin a country of the European Community iiss particularly insecureinsecure with respect to their residence permission in GermanyGermany.. InIn a number of decisions, various German courts have ruled in thoroughly contradictory fashion. InIn 1985, for example, the Admi­Admi- nistrative Court of Saarlouis, Germany, ruled that HIV infection "..." ... justifies the repatriation of an alienallen - regardless of his individualindividual behavior - on the grounds alone of the danger of AIDS (e (e..gg.,., also inin case of his treatment by a physician or inin a hospital). ""6363 The court acted here apparently more under the influenceinfluence of reporting inin the tabloid press than on the basis of well-founded legallegal principleprinciple.. The Frank­Frank- furtfürt Administrative Court struck the same note, asäs late asäs 1989, when it ruled that HIV infectioninfertion represents ""...... such a high degree of peril to the public health of the Federal Republic of Germany that, on this ground alone, the residence of an alien inin the Federal Republic cannot be (further) toleratedtolerated.. ""646' In contrast, howeverhowever,, the Higher Administrative Court of the German Federal State of Baden-WürttembergBaden-WOrttemberg ruled inin the summer of 1987 that the extension of residence permission for an HIV-positive alienallen isis ""...... not precluded solely on the basis of legal grounds (negative barrier) if,if, on the basis of his residence heretoforeheretofore,, itit can be assumed that he despite his HIV infection does notnotjeopardize jeopardize the public health inin the sense of an offense meriting repatriation asäs set forth inin Section 1010,, Paragraph 1, Clause 9 of the Aliens Law (old version)version).. ""6565 This differentiated conception of the matter isis based on the behavior of the alien, and not on the HIV infectioninfection;; it appears to represent the predominant outlook in Germany today. At the same time, however, it does not yet repre-

120 sentsent thethe exclusiveexclusive legallegal view:view: indeed,indeed, thethe opinionopinion isis stillstill encounteredencountered -- al-al­ thoughthough notnot undisputedundisputed - - inin commentarycommentary toto allenalien lawlaw that that thethe publicpublic healthhealth isis likewiselikewise jeopardizedjeopardized inin thethe casecase ofof anan incurableincurable communicablecommunicable disease,disease, eveneven throughthrough nono evidenceevidence existsexists that that thethe alienalien actuallyactually transmitstransmits aa diseasedisease to to othersothers byby virtuevirtue ofof hishis behavior.behavior.6666 TheThe BavarianBavarian CatalogCatalog ofof Measures contains contains itsits ownown sectionsection onon alienalien lawlaw andand stipulatesstipulates thatthat HIV-infectedHIV-infected aliensaliens must inin allall casescases be refusedrefused residenceresidence permission.permission. IfIf anan alienalien submits anan applicationapplication for for aa residenceresidence permit inin Bavarla,Bavaria, andand ifif sheshe oror hehe isis not aa citizencitizen of a countrycountry of thethe European Community,Community, oror not thethe citizencitizen ofof AustriaAustria or Switzerland, thenthen he or sheshe must submit toto an HIV test.test6767 High-court adjudicationadjudication has not yet takentaken place inin Germany toto settle thethe question of whether and under what conditions thethe authorities may request an HIV testtest fromfrom aliens who apply forfor a residence permit, or thethe question of what consequences a positive test result may have inin this context.context. In aa comprehensive study in this area, the attorney Bernd Aretz, former member of thethe board of German AIDS-Hilfe, has arrived at the condusionconclusion that, "..." ... in view of thethe number of aliens entering the Federal Republic of Germany, the number of infected Germans, and the number of those aliens who are either not allowed to be tested or who are not allowed to be re-re­ patriated upon presentation of positive test results, ...... those aliens who are infected and who could theoretically be repatriated are not of numerical consequence.consequence. Compulsory measures taken with respect to aliens on the basis of an HIV infection impair the social climate to such a degree that approaches to restrain the proliferation of the infectioninfection - by aliens asäs wellweil - are significantly impededimpeded..668B It is doubtful whether thisthis insightinsight will prevail inin court decisions or especially in the administrative practice of German immigrationimmigration offices - - particularly inin view of the tendency existing at thesethese points of extensively exploiting every possibility toto deny issuingissuing residenceresidence permits toto aliensaliens..

Conclusions

TheThe judicialjudicial reactionreartion toto thethe phenomenonphenomenon ofof AIDSAIDS isis remarkableremarkable owingowing toto variousvarious of of itsits aspects aspects.. The The initial initial hesitance hesitance on on the the partpart of of publicpublic health health policy­ policy- makersmakers -- whichwhich waswas at at the the beginningbeginning forcedforced toto developdevelop aa prophylacticprophylactic conceptconcept againstagainst aa diseasedisease whichwhich waswas newnew andand unfamiliarunfamiliar inin everyevery respectrespect -- waswas matchedmatched atat thethe samesame time time byby extraordinary extraordinary commotion commotion onon thethe partpart ofof legallegal policymakerspolicymakers andand juristsjurists.. DespiteDespite isolatedisolated warningswarnings aboutabout "apparent"apparent andand deceptivedeceptive activism"activism" andand remindersreminders toto preservepreserve "politico-legal"politico-legal circumspec­circumspec- tion,tion, ""6969 demandsdemands arosearose everever moremore frequentlyfrequently forfor rigorousrigorous applicationapplication ofof existingexisting law,law, oror creationcreation ofof newnew law:law: proposalsproposals characterizedcharacterized notnot onlyonly byby panickypanicky butbut also also byby legally legally dogmaticdogmatic reactions.reactions. TheThe listlist of of references references entitledentitled "AIDS"AIDS and and Law" Law" compiled compiled byby German German FederalFederal Attorney Attorney GeneralGeneral ManfredManfred BrunsBruns byby now now encompasses encompasses around around 500 500 titles, titles, not not including including legal legal decisions decisions.. All All of of this this

121121 commotion, however, hashas had nono noticeablenoticeable effectseffects onon thethe epidemiologicalepidemiological situation.Situation. Even inin Bavaria -- i.e.,i. e., preciselyprecisely where thethe mostmost systematicsystematic effortsefforts were directed throughthrough thethe legallegal means of of copingcoping with thisthis diseasedisease - - therethere hashas been no evidence of special epidemiological developmentsdevelopments:: neitherneither forfor thethe better nor forfor thethe worseworse..'O70 At thethe samesame time,time, however, one may indeedindeed speculate on whether thethe acceptance of preventive appeals would not havehave been takentaken more effectively toto heart, had thethe judicialjudicial flashflash inin thethe pan not takentaken place to repeatedlyrepeatedly alarm the the social groups involved,involved, asäs wellweil asäs society at large.large. ItIt has been only recentlyrecently thatthat certaincertain publications havehave moved toto thethe forefore which have primarily treatedtreated thethe social situationSituation of persons with HIV, and which have endeavored to findfind ways and means to support and protect thesethese peoplepeople.. Nevertheless, structural discrimination has developed inin Germany with respect to persons with HIV -- one which justifiesjustifies speaking of a special legallegal statusstatus:: special in the sense of being inferiorinferior..117' This development can well have consequences for the future -- and not only for persons with HIV. Gene analysis and manipulation now make it possible toto forecastforecast the quality of economic utility of a human being. If persons with HIV are today classified asäs unsuitable for civil service, or dangerous for certain areas of society, then they have been placed in a pioneer role by virtue of the fact that most of them belongbelang to groups of society which at any rate had been considered to be deviatedeviate.. The legal differentiation elaborated on inin the above takes asäs its point of departure not the modes of behavior of certain persons, but their personality chacha-­ racteristics, and can easilyeasi Iy be obscured with respect to these groups of societysociety.. Once such differentiation has become established asäs part of legal standards,Standards, then nothing Standsstands in the way of their being applied to other groups of society. The politico-legal calm which has set in recently must not be allowed to deceptively lull societysoc iety into ignoring the fact that legal measures which persecute and isolate minorities exert, now äsas before, an attraction on a great number of politicians and jurists. Only very slight changes in the political landscape would be required to reactivate such tendencies.tendencies. Special AIDS legislation is not required to counter such an eventuality. Indeed: it is to be feared that, given the current political constellation, such aa development would lead to a legislative package containing not only sup-sup­ porting but also discriminating elements. Nor is an anti-discrimination law required, äsas is currently being called for from various sides.sides. The fundamental functionfunction of a freefree society based on the rule of law is, after all, the prevention of discrimination.discrimination. The Fundamental Rights Article of the German Basic Law - particularly itsits SertionsSections 1 (Paragraph 1), 2, and 3 - already express this clearly.clearly. Even ifif suchsuch guarantees of basic rights initially only indirectlyindirectly restrict thethe power of thethe state, theythey at thethe same timetime represent an injunctioninjunction forfor thethe legislaturelegislature toto taketake action wherever structural discrimination becomes apparent -- i. i.e., "structural""structural" inin thethe sense of involvinginvolving deficiencies inin thethe regula-regula­ torytory mechanisms of thethe legallegal System.system. In such circumstances itit does not suffice forfor thethe government toto issueissue declamatory demands forfor thethe end of discrimination.discrimination. Evidence fromfrom thethe USA confirms this:this: thatthat anti-discriminatory lawslaws havehave by no means contributed toto improvementimprovement of thethe Situationsituation of thethe nonwhite population there.there. Experience gained inin thethe Federal Republic of Ger-

122 manymany provides provides furtherfurther verification verification fromfrom thethe attemptsattempts to to abolishabolish discriminationdiscrimination againstagainst womenwomen - - thatthat eveneven incipientincipient tracestraces ofof thethe improvementsimprovements desireddesired becomebecome apparentapparent onlyonly inin situationssituations inin whichwhich absolutelyabsolutely specificspecific Standardsstandards areare established.established. OneOne exampleexample inin GermanyGermany herehere isis progressprogress mademade fromfrom thethe basicbasic prohibitionprohibition againstagainst indicatingindicating thethe desireddesired sexsex ofof applicants,applicants, inin advertisementsadvertisements announcingannouncing vacanciesvacancies onon thethe employmentemployment market.market. InIn otherother words:words: anti-anti­ discriminatorydiscriminatory legislationlegislation pointspoints outout thethe problem,problem, butbut doesdoes notnot solvesolve it.it. WhatWhat wewe inin GermanyGermany requirerequire isis concreteconcrete legallegal normsnorms forfor protectionprotection againstagainst damagesdamages äsas aa resultresult ofof thethe misusemisuse ofof datadata relatedrelated toto thethe individualindividual personperson -- andand thisthis includesincludes datadata onon personalpersonal characteristicscharacteristics suchsuch äsas HIVHIV serostatus.serostatus. TheThe alreadyalready existingexisting DataData SurveillanceSurveillance Art,Act, andand otherother comparablecomparable legislationlegislation forfor protectionprotection againstagainst datadata misuse,misuse, prohibit onlyonly thethe detrimentaldetrimental utilization andand forwardingforwarding ofof datadata relatedrelated toto individualindividual persons.persons. From thethe elaborationelaboration above,above, itit shouldshould be clearclear thatthat thethe detrimental acquisition of suchsuch Informationinformation must alsoalso be prohibited,prohibited, inin thethe twotwo followingfollowing areas at least:least:

1. InIn thethe context of employer-employee relationships, it must be prohibited toto gather data on physical disposition insofarinsofar äs as such data extends beyond the the determination of currently existing disorders. Such prohibition should includeinclude public-service law, i.i.ee.,., the law governing civil servants. Feasible here are not only civil-law sanctions - e.e.g.g.,, claims for restitution oriented to resulting loss in income - but also criminal-law sanctions, in the event that difficulties in the establishment of the specific loss are to be prevented.prevented. 2. In the context of physician-patient relationships, infringement of the right of informational self-determination - with the definition of "infringement" here also to cover the conduct of HIV tests, asäs supported by the great predominance of legallegal opinion - must be punished inin a manner similar to that applicable for the the prohibited forwarding forwarding of medical data in the the context of a breach of professionalProfessional secrecysecrecy..

Since the the problem complex involvedinvolved here does not admit restrictionrestriction -- either toto thethe relationshiprelationship areas outlined above, or toto thethe phenomenonphenomenon of HIV/AIDS -- thethe opportunity most admirablyadmirably presentspresents itselfitself of establishingestablishing fundamental fundamental prohibition of violation ofof thethe rightright ofof informationalinformational self-determination,self-determination, beginningbeginning at at thethe pointpoint ofof thethe prohibitedprohibited acquisition acquisition of of datadata relatedrelated toto thethe individualindividual personperson.. OwingOwing notnot onlyonly toto thethe fundamentalfundamental tonetöne whichwhich suchsuch legallegal supplementsupplement wouldwould set,set, but but alsoalso toto the the structural structural legal legal grounds grounds concerned,concerned, suchsuch changeschanges should should most most properly properly take take place place in in the the German German Criminal Criminal Code Code itself, itself, andand not not merely merely in in special special supplementary supplementary laws laws devoteddevoted only only to to data data protection. protection.

123123 NotesNotes

11 Deutsch,Deutsch, ErwErwin.in. "AIDS"AIDS undund Blutspende",Blutspende", Neue Neue Jurist Juristischeische WochenschriftWochenschrift ((NJW),NJW), 1985,1985, 27462746 22 Cf.Cf. Koch,Koch, MMichaelichael G.G. AIDS AIDS - - vomvom MolekulMolekül zurzur Pandemie, Pandemie, HeHeidelberg,idelberg, 19871987 33 Cf.Cf. Waiter, Walter, Alfred. Alfred. "A"AIDSIDS alsals Versuchun Versuchung,g, Munich, Munich, 1989, 1989, especially especially p.p. 114 114 If. ff. 44 Lippstreu,Lippstreu, Wolfgang. Wolfgang. "AIDS "AIDS undund Gewerberecht", Gewerberecht", AIFO, AIFO, 1987, 1987, pp. pp. 469 469 - -475475 55 Frosner,Frösner, GertGert G.G. "AIDS-Bekampfung:"AIDS-Bekampfung: 11.II. Die Die unterschiedlicheunterschiedliche SeuchenbekampfungSeuchenbekämpfung inin verschie­ verschie- denendenen Landern",Ländern", publishedpublished inin AIFO,AIFO, 1989,1989, p.p. 597597 If.ff. (598)(598) 66 Ibid,Ibid., p.p. 599599 77 BayerischerBayerischer VerwaVerwaltungsgerichtshofltungsgerichtshof Munchen.München. RulingRuling ofof BavarianBavanan HigherHigher Administrative Administrative Court,Court, 1919 MayMay 1988,1988, Az. 25 CS 88.00312, 88. 00312, pubpublishedlished inin NJW,NJW, 1988,1988, pp.pp. 23182318-2321 - 2321 88 Bundestagsdrucksache,Bundestagsdrucksache, 8/2468,8/2468, AnI.Anl. 1,1, pp.. 2525 99 Cf. e.g, e. g., Albrecht, J. J. "Diskussionsbemerkung"Diskussionsbemerkung zur Veroffentlichung Veröffentlichung vonvon I. l. Schafer",Schäfer", DasDas olfent­ öffent- licheliche Gesundheitswesen, 1987, 1987, p. p. 670670 10 Zitzelsberger,Zitzelsberger, Waiter.Walter. "Auslanderrechtliche"Ausländerrechtliche AspekteAspekte derder "A"AIDS-Problematik",IDS-Problematik", publishedpublished inin AIFO, AIFO, 1988,1988, p. 49 If.ff. (51)(51) 11 Gallwas, Hans-Ulrich. "Gefahrenerforschung undund HIV-Verdacht", HIV-Verdacht", printedprinted in in NJW, 1989, 1989, p. p. 516516 If. ff, 12 -- "AIDS,"AIDS, AlAlltagltag und Recht", printedprinted inin MDR, 1987, p. 353;353; -- "AIDS"AIDS imim BetrBetriebieb undund imim Arbeits­Arbeits- leleben",ben ", printed in in MDR, 1988 1988,, p.p. 95; -- "A"AIDSIDS undund Strafvollzug", printed printed in in Strafverteidiger, 1987, 1987, pp. 504 -- 507; inin other sources asäs well 13 Bruns, Manfred. "AIDS, Alltag und Recht", MRD, 1987, p. 354 If. ff. 14 Bundesverfassungsgericht. Ruling of the the German Federal Federal Constitutional Court dated 28 July 1987 - BvR 842/87; NJW ( (NeueNeue Juristische Wochenschrift), 1987,1 987, pp. 2287 -- 2288 15 Ibid.Ibid. 16 Ibid. 17 Cf.Cf, Hoffmann,Hoffmann, Jochen. "Verfassungs-"Verfassungs-undund verwaltungsrechtliche Probleme der Virus-Erkrankung "AIDS unter besonderer BerucksichtigungBerücksichtigung des bayerischen MaBnahmenkataMaßnahmenkatalogs",logs", NJW (Neue Juristische Wochenschrift), 1988, pp. 14861486- - 1494 18 Seewald, Otfried. Otfned. "Zu"Zurr Verantwortlichkeit des BurgersBürgers nach dem Bundesseuchengesetz", NJW ((NeueNeue Juristische Wochenschrift), 1987, pppp.. 2265 ff. 19 Verwaltungsgerichtshof München.Munchen. Ruling of the Higher Administrative Court of Munich, NJW (Neue Juristische Wochenschrift), p. 2318 20 "Bekanntmachung des BayerischenBayerischen StaatsmStaatsministeriumsinisteriums des Innern vom 19.05.198719. 05. 1987 zum Voll­Voll- zug des Seuchenrechts, des AuslanderrechtsAusländerrechts und des Polizeirechts", published in various sources, also in AIFO, 1987, pp. 346 ff. 21 Bayerischer Verwaltungsgerichtshof, published in AIFO (AIDS-Forschung), 1988, p. 283; Verwaltungsgericht München,Munchen, StV (Der Strafverteidiger), 1988, p. 165; BayerischerBayerisch er Verwal-Verwal­ tungsgerichtshof,tungsgerichtshof, published in NJW (Neue Juristische Wochenschrift), 1988, p. 2318; Verwal-Verwal­ tungsgerichttungsgericht München,Munchen, AIFO, 1988, p.p. 694; Verwaltungsgericht Augsburg, AIFO, 1988, p. 569 22 Cf. Hoffmann,Holfmann, op. cit. 23 "AIDS:"AIDS: Fakten und Konsequenzen", ZwischenberichtZwischenbericht der Enquete-Kommission des 11. Deutschen Bundestages: "Gefahren von "AIDS"AIDS und wirksame Wege zu ihrerihrer Eindämmung",Eindammung", published inin Zur Sache -- ThemenThemen parlamentarischer Beratung, Nr. 3/88, p. 22 2424 Ibid.,Ibid., p. 2323 25 Ibid.,Ibid, p.p. 2525 26 Ibid.,Ibid, pp. 24 ff.If. 2727 "AIDS:"AIDS : Fakten und Konsequenzen", EndberichtEndbericht der Enquete-Kommission des 11.11 Deutschen Bundestages:Bundestages: "Gefahren"Gefahren vonvon "AIDS"AIDS und wirksame Wege zuzu ihrerihrer Eindammung",Eindammung ", published inin ZurZur Sache-ThemenSache - Themen parlamentarischerparlamentarischer Beratung, Nr. 13/90, p. 316316 2828 Ibid.,Ibid, p.p. 322322 2929 Ibid.,Ibid., pp.pp. 355355 ff.If. 3030 AsAs onlyonly oneone sourcesource forfor manymany others, others, withwith numerous additionaladditional references:references: Bundesgerichtshof.Bundesgerichtshof. RulingRul ing ofof thethe GermanGerman FederalFederal CourtCourt ofof Justice,Justice, 16 OctoberOctober 1962,1962, NJWNJW (Neue(N eue JuristischeJuristische Wochenschrift),Wochenschrift), 1963,1963, p.p. 393;393; Bundesgerichtshof.Bundesgerichtshof. RulingRuling ofof thethe GermanGerman Federal CourtCourt ofof Justice,Justice, BGHStBGHSt 12,12, 379379 (383)(383) == NJW NJW (Neue(Neue JuristischeJuristisch e Wochenschrift).Wochenschrift), 1959,1959, 825825

124124 3131 Cf.Cl. thethe rulingruling ofof thethe Mainzlv1ainz State'sState's Attorney,Attorney, inin NJWNJW (Neue(Neue JuristischeJuristische Wochenschrift),Wochenschrift), 19871987, p.p. 2946;2946; JA,JA, 1988,1988, p.p. 112,112, withwith referencereference to to Solbach;Solbach; NStENStE StGB 5tGB 223,223, Nr.Nr. 3,3, äsas well well äsas DeutscheDeutsche AIDS-HilfeAIDS-Hilfe e. eVV. (publisher):(publisher): "AIDS"AIDS und und HIVHIV im im Recht",Recht", Bamberg,Bamberg, 1991,1991, p.p. 263263 ff.ff. 3232 ForFor example, example, notnot toto bebe inin aa positionposition toto openopen aa privateprivate healthhealth oror life-insurancelife-insurance policy. policy. SeeSee additionaladditional referencesreferences below.below. 3333 SeeSee notenote 1515 3434 G.G. Pfeiffer.Pfeiffer. "AIDS"AIDS undund Recht:Recht; DasDas Parlament-Parlament - Beilage:Beilage: ausaus PolitikPolitik undund Zeitgeschichte,Zeitgeschichte, Nr.Nr. BB 48/8848/88 dateddated 2525 NovemberNovember 1988,1988, p.p. 2121 (23)(23) 35Janker,35 Janker, H.H. "Heimliche"Heimliche HIV-AntikörpertestsHIV-Antikbrpertests - - strafbarestrafbare Körperverletzung?"Kbrperverletzung?" NJWNJW (Neue(Neue Juristi-Juristi- sehesche Wochenschrift),Wochenschrift), 1987,1987, p.p. 28972897 (2899)(2899) 3636 Janker,Janker, op. op. cit.,cit., p.p. 29022902 (without(without aa specificspecific reference reference äs as to to which protected rightsrights are involved)involved) 3737 Cf.Cf. Böllinger,Bbllinger, opop cit.cit. 3838 Gerberding,Gerberding, J.J.L.L. etet ai.al . "risk"risk of exposureexposure of surgicalsurgical personnelpersonnel toto patients's blood duringduring surgerysurgery atat SanSan FranciscoFrancisco General Hospital", NEngUMedNEnglJlv1ed 322:1788-93322: 1788-93 (June(June 21), 1990 39 Staatsanwaltschaft beimbeim LGLG Mainz.lv1ainz. "Einstellungsverfügung" EinstellungsverfUgung vom 14.14.08.1987",08. 1987", 22 Js 55.55.752/87,752/87, printed inin NJW (Neue(Neue Juristische Wochenschrift), 1989, pp. 2946-2948; also inin RAR (Rundbrief (Rundbrief AIDSAIDS & Recht der D.DAHA. H..),), no,no. 2/1989, pp. 1-3 40 Ibid.Ibid. 41 Amtsgericht Kempten. RulingRu ling of Local Court in Kempten on 20 June 1988, Az. Ls 11 Js 393/88 printed in NJW (Neue Juristische Wochenschrift), 1988, pp,pp. 2313 ff.If. 42 Herzberg, Rolf Dietrich.Dietrich. "Die Strafdrohung alsals WaffeWalfe im Kampf gegen AIDS?" NJW (Neue Juri-Juri­ stischeWochenschrift),stische Wochenschrift), 1987, pp.pp. 1461-1466(1466)1461-1466 (1466) 43 Ibid.Ib id. 44 Bundesgerichtshof.Bundesgerichtshol. RulingRu ling of the German Federal Court of Justice, 4 November 19881988, AzAz. 1 StR 262/88, printed in several sources, including NJW ((Neue Neue Juristische Wochenschrift), 1989, pp. 781 If.ff. 45 Forexample,For example, in: Bottke, Wilfried. "Rechtsfragen beim ungeschOtztenungeschützten Geschlechtsverkehr eines HIV-lnfizierten",HIV-Infizierten", publpublishedished inin AIFO, 1989, pp. 468 If.ff. 46 Bottke, op. cit., p. 471 47 Bruns,Bruns. lv1anfred.Manfred. "Nochmals: "AIDS und Strafrecht", NJW (Neue Juristische Wochenschrift), 1987, pp. 2281-2282 48 Bundesgerichtshol.Bundesgerichtshof. Ruling of the German Federal Court of Justice, op. cit.,cit source 44 49 BayerBayerischesisch es Oberstes Landesgericht. Ruling of Supreme Regional Court of Bavaria, 26 October 1989, NJW (Neue Juristische Wochenschrift), 1990,1990, pp. 281 If.ff, 50 Arbeitsgericht BerlBerlin. in. Ruling ofofthe the Berl Berlinin Labor Labor Court, 19 lv1ay May 1987 1987,, Az. 24 Ca 319/86, 319/86, printed inin NJW (Neue(Neue Juristische Wochenschrift),Wochenschnft), 19871987,, p.p. 23252325 51 Landesarbeitsgericht BeBerlin.rlin. Ruling of BerlBerlinin HHigherigher Labor Court, 1010June June 1987,1987, Az. 10 Sa 11/87 11/87 52 LandgerLandgerichticht Braunschweig. Ruling of the the Brunswick,Brunswick, Germany,Germany, RegionaRegionall Court,SCourt, 5 October 1989, Az. 4 0 240/89 5353 HHinrichs,inrichs, Werner. "Gesunde"Gesunde schOtzen,schützen, ErkrankteErkrankte nichtnicht ausgrenzenausgrenzen -- Arbeitsrechtliche Aspekte vonvon AIDS", speCialspecial printingprinting takentaken fromfrom ArbeitsrechtArbeitsrecht imim Betrieb,Betrieb, no.no. 1/88,1/88, p.p. 8 5454Mertens, lv1ertens, GerhardGerhard.. "Berufskrankheit"Berufskrankheit AIDS",AIDS", publishedpublished byby BerufsgenossenschaftBerufsgenossenschaft fUr für Gesund­Gesund- heitsdienstheitsdienst undund Wohlfahrtspflege,Wohlfahrtspflege, asäs special special printingprinting takentaken fromfrom lv1itteilungsblatt,Mitteilungsblatt, no.no. 2121 5555 For For example:example: Kathke, Kathke, Norbert. Norbert. "Die "Die BegutachtungBegutachtung vonvon anti anti-HIV-positiven-HIV-positiven PersonenPersonen durch durch das das Gesundheitsamt",Gesundheitsamt", AIFOAIFO (A (AIDS-Forschung),IDS -Forschung), 1986,1986, pp.pp. 665-668;665-668; asäs well well asäs in in Seume,Seume, lv1anfred.Manfred. "Der"Der HIV-AntikbrpertestHIV-Antikörpertest beibei EinstelEinstellungsuntersuchungenlungsuntersuchungen vonvon Beamtenbewerbern",Beamtenbewerbern", AIFO,AIFO, 1987,1987, pp. pp. 703-707703-707 5656 Bayerischer Bayerischer VerwaltungsgerichtshofVerwaltungsgerichtshof 1v10nchen.München, RulingRuling of of Bavarian Bavarian Higher Higher AdministrativeAdministrative Court Court in in lv1unich,9Munich, 9 NovemberNovember 1988, 1988, Az. Az. 3 3 CSCS 88.01854, 88. 01854, printed printed in in AIFO AIFO (AIDS-Forschung),(AIDS-Forschung), 1989, 1989, p. p. 89-92 89-92 5757 Ibid,Ibid., p.p. 9292 5858 For For example, example, Haesen, Haesen, Wilfried. Wilfried. "HIV "HIV-Test-Test beibei Beamte Beamtenänwartern?"nanwartern?" published published in in Zeitsc Zeitschrifthrift fOrfür RechtspolitikRechtspolitik (ZRP),(ZRP), 1989.1989. pp.pp. 1515 If. ff. 5959 Lichtenberg, Lichtenberg, Peter,Peter, Dr. Dr. Dr. Dr. and and Dr. Dr. Werner Werner Winkler. Winkler. "Die"Die Immunschwache Immunschwache AIDS AIDS und und das das Beam­ Beam- tenrechttenrecht unterunter besondererbesonderer BerOcksichtBerücksichtigungigung desdes HIV-AntHIV-Antikörpertestsikbrpertests alsals EEinstellungsvoraus-instellungsvoraus­ setzung",setzung", publ publishedish ed in in Deutsches Deutsches VerwaltungsblattVerwaltungsblatt (DV(DVBI), BI), 1990, 1990, pp. pp. 9 9-18-18 6060 Cf. Cf. Wollf, Wolff, Volker. Volker. "Suchtrupps", "Suchtrupps", printed printed in in Capital, Capital, no. no. 3,1987 3, 1987 6161 WeWe chose chose to to allow allow this this ironically ironically exaggerated exaggerated formform of of expression, expression, asäs it it used used only only at at this this point, point, toto remainremain

125125 62 ForFor example, example, Oberlandesgericht Oberlandesgericht Dusseldorl. Düsseldorf. Ruling Ruling of of H Higherigher Reg Regionalional Court Court of of Dusseldorf, Düsseldorf, Az. Az. 44 UU 38/91,38/91, printedprintecf inin RRundbriefundbrief A AIDSID S und und RechtRecht of of thethe DAH.D.A. H. (RAR),(RAR), 1/2,1/2, 1992,1992, pp.pp. 1717 If.;­ ff. ; - LandgerichtLandgericht FrankfurtFrankfurt inin VersRVersR 1992,1992, p.p, 563563 63 Verwaltunggericht Saarlouis. Ruling of of Administrative Administrative Court Court of of SaarSaarlouis,louis, Germany, Germany, 22 OctoberOctober 1985,1985, Az. 1010F F 35/85, printedpnnted inin AIFO (AIDS(AIDS-Forschung), -Forschung), 1986, 1986, pp. pp. 260-262260-262 64 Verwaltungsgericht Fra Frankfurt.nkfurt. Ruling of of FrankfurFrankfurtt Administrative Administrative Court, Court, 88 FebruaryFebruary 1989 1989,, Az. VII1VI/1-H3719/88,-H 3719/88, printedprinted inin RundbriefRundbriefAIDS AIDS & RechtRecht of thethe DAH.D. A. H. (RAR),(RAR), 1989,1989, pp.pp. 88-9-9 65 Verwaltungsgerichtshof Baden-WurttembergBaden-Württemberg Mannheim. Mannheim. Ruling of ofthe the Baden-WurttembergBaden-Württemberg Higher AdminAdministrativeistrative Court inin Mannheim, 30 JulyJuly 1987,1987, Az. 1111 S 805/87,805/87, printedprinted inin NJWNJW (Neue(Neue JUrlstischeJuristische Wochenschrift), 1987,1987, pp.pp. 2953-29542953-2954 66 Cl.Cf. Kloesel-Christ.Kloesel-Chnst. Deutsches Auslanderrecht,Ausländerrecht, 2nd2nd edition,edition, §§ 10,10, RdrRdr.. 6565 67 This isis the so-called ""BavarianBavarian Catalog of Measures": BekanntmachungBekanntmachung desdes BayerischenBayerischen Staatsministeriums des InnernInnern vomvom 19.5.198719. 5. 1987 zum Vollzug desdes Seuchenrechts, desdes AuslanderrechtsAusländerrechts und des PoPolizeirechts.lizeirechts, Az. IE/IAIICIE/IA/IC -- 5280 -- 8.217/87,8. 2. /7/87. Abschn. BB 68 Aretz, BerndBernd;; Ulrike Meuser; and Hannes Flotho. "Rechtliche"Rechtliche Beurtei Beurteilunglung der HIV-InfektHIV-lnfektionion von AuslandernAusländern inin der Bundesrepublik Deutschland, Marburg, 17.2.1989,17. 2. 1989, DrucksachDrucksachee der AIDS­AIDS- Enquetekommission, Nr. 390 69 For exampexample:le: Koch, Hans-Georg. "Rechtliche"Rechtliche Probleme bei AIDS",AID5", special printing fromfrom Freiburger Universitatsblatter, Universitätsblatter, Heft 97, November 1987, p. 66 70 Cl.Cf. the monthly case statistics published by the German Federal Health Office ((Bundesgesundheitsamt,Bundesgesundheitsamt, AIDS-Zentrum) 71 Baumhauer, Friedrich."HIVFriedrich. "HIV-Positive-Positive = SonderrechtsstatusSonderrechtsstatus?"J " DAH.-Aktuell,D. A. H. -Aktuell, Nov/Dec 1989, pp. 14-15

126 , BAND XII

Aspects of AI DS and AIDS-HILFE in Germany

• On the History of the AIDS-Hilfe • Reactions of the Gay Community to AIDS in East and West Berlin • Gay Men and Health Promotion • Harm Reduction and the Political Concept of the "War on Drugs" in Germany • JES - History, Demands and Future • Therapy Studies, Ethics and Design - Involv­ ing Directly Affected People in Clinical Trials • Caring for Out-Patients with AIDS • Non-Governmental Organizations in Europe: Networking as a Tool for Information, Education and Prevention • Legal Measures Employed in Germany for Coping with AIDS

ISSN 0937-1931 ~ Deutsche ...... AIDS -Hilfe e_V.