Wissenschaftszentrum Berlin für Sozialforschung ISSN-0935-8137
P92-211
AIDS: Questions and Lessons for Public Health
by
Rolf Rosenbrock
Berlin, Oktober 1992
Publications series of the research group
"Health Risks and Preventive Policy"
Wissenschaftszentrum Berlin für Sozialforschung D-1000 Berlin 30, Reichpietschufer 50
Tel.: 030/25491-577
Nearly ten years after health policy began to address HIV-infection and its conse
quences, both the debate on the "normalization" of AIDS, and the increased efforts to establish Public Health curricula at German universities, give occasion to reflect on what those involved in the theory and practice of Public Health provision can learn from recent experience in dealing with HIV and AIDS.
The following elements of answers to this question will consider in turn these issues:
1. Social inequality in the face of disease and death; 4 2. Risk perception;
3. Risk management;
4. Approaches to prevention;
5. Stabilization of self-help groups;
6. Professional responsibility;
7. Adaptation of health care;
8. Health as an issue of social movements;
9. Cross-sectional health politics;
10. Institutionalization of Public Health.
This paper is based on the author’s lectures both at the Conference on Clinical Psy
chology in Berlin, and at the Fourth German AIDS Conference in Wiesbaden in Spring, 1992. Parts of if have been presented at the expert meeting ’Understanding AIDS’ at Luxembourg University Center (June 1992) and at the VIII. International Conference on AIDS at Amsterdam (July 1992). The German version of this text has been published in the Jahrbuch für Kritische Medizin 18: Wer oder was ist Public Health? (= Argument Sonderband AS 198, Hamburg 1992).
B o th n e a rly te n y e a rs o f h e a lth -p o lic y m e a s u re s to d e a l w ith H I V - in fe c tio n a n d its c o n s e q u e n c e s , a n d th e in c r e a s e d e ff o r ts to e s ta b lis h P u b lic H e a l th c u rric u la a t G e r m a n u n iv e rs itie s , g ive o c c a s io n to th in k a b o u t th e c o n c lu sio n s to b e d ra w n f o r th e th e o ry a n d p ra c tic e o f g e n e ra l-p u b lic h e a lth c a re f r o m th e w ay s in w h ic h sc ie n c e a n d p o litic s h a v e a d d re s s e d H IV -in fe c tio n .
What is Public Health?
P u b lic H e a lth c a n n o t b e tr a n s la te d lite ra lly in to G e r m a n .
It denotes the theory and practice of group- or population-related policies and measures, intended both to decrease morbidity and mortality rates, as well as to pro
mote good health. Insofar it also includes the regulation of health services. Public
Health analyzes and influences, beyond individual cases, epidemiologically-relevant risk structures, causal contexts and ways of coping. As a science, Public Health is
multi-disciplinary; as regards politics, the decision criteria and postulates for action gained from Public Health should be considered cross-sectionally in nearly all areas of politics.
What is HIV-infection?
To today’s knowledge, the retrovirus HIV is transmitted by the introduction of infected body fluids. This happens predominantly in penetrating sexual intercourse, through direct introduction of contaminated blood (when using non-sterile syringes in intra- venuous drug-use and in medical treatment), as well as pre- und perinatally from mother to child. After a dormant period of up to more than ten years (with presumed continuous infectiousness), the majority of HIV-infected suffer a slow breakdown in their immune system. This provides points of attack for numerous (and sometimes very serious) infections and diseases of the central nervous system, from which the vast ma
jority of patients, according to the present state of medical knowledge, die within three years. At their onset most cases of AIDS display mild symptoms.
The use of condoms during penetrating sexual intercourse in the absence of monogamy, the careful control of donated blood, and the use of sterile needles in intravenous drug-use offer very high or even complete protection from infection.
The fact that AIDS is embedded in sexuality, promiscuity, homosexuality, drugs and ad
diction, makes unbiased and scientific treatment of the basic health issues both difficult and complicated.
Now, what can be learned from the handling of HIV and AIDS for the theory and prac
tice of Public Health provision? As a provisional and incomplete answer to this question ten Public Health problems posed by AIDS will be sketched. These follow in the form of theses with a view towards their possible generalization, and incorporate results of my own analyses as well suggestions for work in a future subject "Public Health".
I. Social inequality in the face of disease and death
Depending on the distribution of risk behavior and the effectiveness of transmission, one finds from both a social and regional perspective very different patterns of the epi
demic’s distribution (Rosenbrock 1991a).
While AIDS, for example, appears a serious health problem for the Federal Republic of Germany, it is one which nevertheless can still essentially be controlled by intensified and continued efforts at prevention. However, many countries in Africa, increasing numbers in Asia and Latin-America, and economically-depressed inner cities (such as those in the United States) find themselves in a continued free-fall into health policy ca
tastrophe. This is the result of a highly unequal distribution both of risks and of the re
sources to cope with them.
While transmission via anus/rectum and contaminated needles seems to be, under all circumstances, rather effective, the probability of contagion via the vagina evidently de
pends (according to today’s knowledge) on the presence of additional infections and sores in the genital area. It thus depends, roughly speaking, on the physical condition of the genitalia and on overall physical health. This explains - probably together with dif
ferences in sexual behavior patterns - the fact that, while more than three quarters of the 10 million infections cumulatively estimated by WHO for the end of 1991 are sup
posed to have been caused by heterosexual intercourse, such transmission is the excep
tion in rich countries or among the affluent. This explains, at the same time, the negative relationship between the extent of the epidemic and social class ranking: AIDS is
tending to become, as all infectious diseases have, a disease of the poor and of poverty.
Globally considered it has been such for a long time. In the lower ranks of the hierarchy of social and health opportunities, physical vulnerability and material, cognitive and emotional obstacles or barriers to the reception and realization of the prevention message join with poorer conditions of coping with disease to generate a
class-determined, clearly higher risk of infection. The relationship that exists between these socially mediated co-factors of the epidemic and the still vague findings of psy
cho-immunology is still unclear (cf. Mielck 1989; Deutsche AIDS-Stiftung 1990). In
any case, this inequality cannot be countered primarily by medical intervention (McKeown 1982).
For the theory and practice of Public Health, the joint effect of higher risk of and fewer opportunities to cope with the risk and the disease among the lower and marginal classes or groups of the population is an almost continual pattern (concerning the poor state of research in this area in the (old) Federal Republic see Mielck 1991), and is thus a central challenge. Decreasing social inequality in the face of disease and death is the major task for humane health policies (Rosenbrock 1992b). AIDS puts this issue visibly on the agenda again, and in its global context, too.
2. Risk perception
It is a fact, corroborated by much observation and investigation, that individuals, social and professional groups, institutions and political mechanisms perceive health risks or dangers only selectively, and for the most part not in accordance with their possible epi
demiological significance (Levine/Lilienfeld 1987; Slovic 1987; van den Daele 1988;
Jungermann/Wiedemann 1990; Renn 1991). The problem of unfounded and even counterfactual diminution or enlargement in the perception of health dangers and their probability to occur, with all its paradoxes on the levels of individual and societal action, has until now been examined primarily for the potential risks from technologies, es
pecially from nuclear energy and genetic engineering. It is seen that perceived risk in
creases mainly in cases where the dangers are posed by especially unfamiliar events und damages (dread factor) and the extent and the type of harm cannot be foreseen because they are unknown (unknown factor) (Slovic 1987). Danger and appraisals of risk vary moreover - in surprising independence from their real size - as a function of in
cumbent responsibility, assumptions about the possibility of regulation and control, self-confidence, education, and age, etc. The distortions in the distribution of alertness and resources given to health policy, which this type of perception produces, often stands in the way of a rational and fruitful health policy.
In the case of AIDS, the societal and, in massive proportions, the individual perception of risk as well seem to have run wild: temporarily, AIDS seemed to be the biggest health problem of the old Federal Republic. This kind of risk perception has become clearly absurd during the second half of the 1980’s; all the same, in retrospect it can be regarded (for the (old) Federal Republic at least) as having been productive. This is because it brought to established politics in general a deep fear of a possibly unstoppable cata- strophy. This led to a high political receptiveness for action and public spending. To this was added a deep and very liberal-oriented concern about the social dangers of AIDS.
Against the background of German history and the vulnerability of the two groups most affected (homosexuals and i.v. drug users), this resulted in considerable energy being spent to prevent minorities falling under suspicion or being subjected to witch hunts.
This complex type of risk perception provided, initially, for much political innovation.
Additionally, this innovation did not come cheaply. Both these assertions are seen in the politically courageous decision for a new type and a new quality of publicly organized prevention (see under 3). But they are seen as well in the considerable funds and the structural flexibility which were drawn upon to adapt health care to the specific charac
teristics of AIDS (see under 7). Paradoxically, then, this political perception of the risks from AIDS turned out to be productive, although it was not wholely based on reason.
The current decline in individuals’ and politic’s perception of the risks from HIV-infection again runs contrary to actual developments in the problem. Both:
a) cuts in financial support for AIDS self-help groups, in a situation where the forces of prevention there are beginning to run out of steam and much is heard (although without certainty) about the letting-up of safer sex even in the groups mainly affected ("relapse"; young gays or gays coming-out; bisexuals); as well as b) the breaking up of models of care-provision which had only started to become
financially supported in the face of quantifiable increases in the number of cases;
show that the politics of health obviously follow a different type of logic than that re
quired to address health challenges in proportion to their size and importance.
Against this background of changing and only rarely realistic perceptions about and communication of the dangers of AIDS, and in view as well of the complexity of health risks leading to the chronic, degenerative diseases dominant today in industrialized countries, it is a task of the first order for Public Health as a social science to develop and try out new theories and methods for a meaningful discourse about different health risks (National Academy of Sciences 1988). If AIDS provides the impetus for such an exchange, then, given the risks of heart attack or illnesses caused by multiple factors (e.g., industrial diseases), it will have generated important information. While often contradictory and changing over time, the nevertheless influentiable (BZgA 1987, 1990) perceptions of risks and dangers on the part of individuals and groups (Richter 1987;
Reimann et. al. 1992; Eirmbter et. al. 1992) and institutions and political mechanisms (Czada/Czada and Prokop, in Rosenbrock/Salmen 1990; Kirp/Bayer 1992) have already been better examined today than the epidemiologically "big" diseases. It would be necessary to relate this knowledge to the research results on the perception of dangers and risks that are predominantly technically and socially generated, to gain in
sights for building channels of communication that foster a rational appraisal of the risk
posed by different areas. Attempts to standardize risk perception by means of de-facto censorship ("AIDSspeak") of statements on AIDS risks (see Kirp/Bayer 1992), effective in the first years of the epidemic for example in the Netherlands and Denmark, cannot be a realistic solution.
But even before a solution is found for the manifold problem of individual and insti
tutional risk perception, a promising approach to AIDS (which might provide as well a solution to the basic problems of risk perception) can be named today: it is imperative (Borgers 1991; Rosenbrock 1992b) that the health reporting organized in various forms in the Federal Republic today (Forschungsgruppe 1990) be extended to include risk as
sessment. Even the most advanced efforts so far (MAGS 1990) have fallen far short of this. Even if, and indeed especially because, there cannot be expected from the outset agreement in the responses of various disciplines and interest groups to the question
"what is under what probability dangerous for whose health?" (on some dimensions of the complexity occurring in this context see Borgers/Karmaus 1990; Überla 1990; Bran
denburg et al. 1991), there is no reasonable alternative to a public debate on this. This may, as a result, lead to a heightened critical ability to confront problem minimization as well as panic mongering, and, on the whole, to a higher sensitivity towards health risks.
But both these results, by enhancing perceptive and critical abilities and by motivating people as well, promise to help fulfill the WHO’s Ottawa Charter demands for im
proved opportunities for individuals and groups to influence their own health (cf. Con- rad/Kickbusch 1990). In other words: a contentious public debate that addresses risk and health reporting on the "whether," "where from," "how big" and "for whom" of health risks deriving from behavior, milieu and environment, may improve the con
ditions for a rational health discussion and perhaps even of a rational politics of health (cf. also National Academy of Sciences 1989).
3. Risk management
AIDS has confronted not only health politics and Public Health with unsolved old and new problems regarding risk perception and communication, but as well with concerns for political risk management. International comparison has shown a surprising con
gruence for the industrialized countries in the existence of conflicting positions
(Kirp/Bayer 1992). In all countries, this took the form of two highly incompatible stra
tegies (cf. Rosenbrock 1986, 1987).
The individual search strategy was paraphrased by the question: How can we identify as fast as possible as many as possible sources of infection, and how can we put them out of action?
T h e s tr a te g y o f s o c ia l le a rn in g a s k e d , o n th e o t h e r h a n d : H o w c a n w e o rg a n iz e as f a s t as p o s s ib le , as e x te n s iv e ly a n d a s s ta b ly a s p o s s ib le le a r n in g p ro c e s s e s by w h ic h in d iv id u a ls a n d so c ie ty c a n a d a p t, w ith a m a x im u m o f p r e v e n tio n , to a life w ith th e v iru s?
O n ly in Q u e e n s la n d , A u s tra lia , a n d s o m e s ta te s o f th e U S A , w a s th e p o litic a l d is p u te b e tw e e n th e s e tw o s tra te g ie s a s fie r c e as in G e r m a n y . I n a ll o f th e in d u s tria liz e d c o u n trie s , S w e d e n b e in g a p a r tia l e x c e p tio n , th is d is p u te w a s d e c id e d in f a v o r o f th e le a rn in g s tra te g y , o r fo llo w in g A m e ric a n u s a g e , th e s tr a te g y o f " in c lu sio n a n d c o o p e ra tio n " p r e v a ile d o v e r th e s tra te g y o f " c o n tro l a n d c o n ta in m e n t" (cf. K ir p /B a y e r 1992).
F o r th e q u e s tio n , c e n tra l to P u b lic H e a lth , o f th e fle x ib ility a n d t h e c a p a c ity f o r in n o v a tio n in h e a lth p o litic s, th is m e a n t th e fo llo w in g . F a c in g a p re s s in g p ro b le m in th e c a se o f A ID S , a n e w stra te g y to a d d re s s a n e w d is e a s e e m e r g e d , a n d it d id so in s p ite of: (a ) fie r c e p o litic a l o p p o s itio n fro m g ro u p s w ith o n ly a s e c o n d a ry id e o lo g ic a l in te r e s t in th e m a tte r ( s e e B le ib tr e u - E h r e n b e r g 1989); (b ) la rg e p a rts o f a m e d ic a l c o m m u n ity c o m m itte d to t r e a tm e n t o n a n in d iv id u a l b a sis ( s e e f o r e x a m p le th e c o n tro v e rs ie s in: D e u t s c h e r B u n d e s ta g 1 9 8 8 ,1990b); a n d (c ) a g a in s t th e o p in io n o f th e m a jo rity o f th e p o p u la tio n , as s h o w n by p u b lic o p in io n p o lls ( E ir m b te r e t al. 1992).
A n d th is e v id e n tly w ith g o o d re a s o n . A t le a s t in th e g ro u p s m a in ly a t ris k f r o m H IV , c h a n g e s in a ttitu d e a n d b e h a v io r h a v e o c c u rr e d w h ic h s u rp a s s in e x te n t a n d d u r a tio n all e x a m p le s f ro m th e p re v io u s h is to ry o f p r e v e n tio n a n d P u b lic H e a lth ( D a n n e c k e r 1991;
B o c h o w 1992; P o lia k 1990). A t le a s t in C e n tr a l a n d N o r th e r n E u r o p e , th e s tr a te g y o f le a rn in g h a s b e e n e ff e c tiv e f a s te r a n d , o n th e w h o le , m o r e su c c e ssfu l th a n a n y o th e r k n o w n P u b lic H e a lth e ff o r ts a t b e h a v io r m o d ific a tio n . T h is is sh o w n b y a c o m p a ris o n w ith th e a d o p tio n o f p e rs o n a l h y g ie n e in th e fig h t a g a in s t o ld in fe c tio u s d ise a s e s, w ith d e n ta l h y g ie n e , w ith sm o k in g , w ith e x e rc is e , w ith d ie t, w ith th e u se o f le g a l a n d illegal d ru g s, e tc . S o it has tu r n e d o u t to b e p o s s ib le f o r p o litic a l r e s o u r c e s to b e u s e d to f o s te r p u b lic le a rn in g , a n d th e r e b y a f f e c t b e h a v io r e v e n in "ta b o o " a r e a s o f s h a m e a n d il
le g a lity ( R o s e n b r o c k /S a lm e n 1990).
N ow , if th is a p p ro a c h , d e s p ite a ll its d e fic its, h a s b e e n su c c e ssfu l in g ro u p s a t h ig h e s t risk - w h a t, th e n , c a n b e said a g a in s t tra n s f e r r in g it to o th e r h e a lth risk s?
In th e f ir s t p la c e , th e r e is c e rta in ly th e f a c t th a t p o litic a l e n e rg y is a lto g e th e r la c k in g f o r an e ff e c tiv e p r e v e n tio n p o lic y (cf. R o s e n b r o c k 1992a).
F u r th e r a n d a b o v e all th e r e m a in in g issu e s is th e f a c t th a t e v e n u p to th e p r e s e n t it has b e e n im p o s s ib le to d e te r m in e w h ic h f a c to rs b ro u g h t a b o u t th is success, a n d to w h a t d e g re e e a c h w as re s p o n s ib le . W as it th e le a rn in g c lim a te ? W as it so cial s o lid a rity w ith in th e a f f e c te d g ro u p s ? W as it th e c o m b in e d u s e o f p o p u la tio n -w id e slo g a n s a n d c a m p a ig n s a im e d a t s p e c ific ta r g e t g ro u p s, th e l a t te r o rg a n iz e d b y th o s e c o n c e rn e d , a n d p e r s o n a l c o u n s e llin g ? W as it th e q u a lity o f th e m e s s a g e a n d o f its tra n s m is s io n ? W as it th e e x te n s io n o f t h e c la ssic a l p a ra d ig m in h e a lth e d u c a tio n to in c lu d e e le m e n ts s tru c tu ra lly a ffe c tin g th e q u a lity o f life ? O r w as it th e p r e s s u r e c a u se d by m a ssiv e p e rs o n a l c o n f r o n ta tio n w ith th e c o n s e q u e n c e s o f risk, th a t is, w ith H IV -in fe c te d p e rs o n s a n d p e rs o n s s u ffe rin g f r o m A ID S in o n e ’s o w n s u rro u n d in g s ? W e d o n o t k n o w m u c h a b o u t th e s e issues. I t is m e r e ly th e to ta l e ff e c t t h a t c a n b e m e a s u r e d h a lfw a y to s a tis fa c tio n . T h e d if f e r e n t e le m e n ts o f p r e v e n tiv e s tr a te g ie s w e r e c o m p ile d f r o m th e o r ie s o f c o g n itiv e a n d so cial le a r n in g a n d c o m m u n ic a tio n , a s w e ll a s f r o m d e s id e r a ta o f m a rg in a lly c o n c lu siv e b e h a v io ris tic e x p la n a to r y a p p ro a c h e s (a s a c ritiq u e s e e f o r in sta n c e , B e n g e l/W ö lflic k 1991) s u c h as h e a lth b e lie f, se lf e ffic a c y , lo c u s o f c o n tro l, etc ., a n d fin a lly fro m th e p sy c h o lo g y o f a d v e rtis in g . T h e q u e s tio n o f tr a n s f e r a b ility to c a m p a ig n s a g a in s t o th e r h e a lth risks, s o m e r e q u ir in g a c o n s id e ra b ly m o re c o m p le x p r e v e n tio n m e s s a g e a n d c o n fro n tin g as w e ll p o w e rfu l in te r e s ts o p p o s in g th e ir im p le m e n ta tio n , d e m a n d s c o n s id e r a b le s c ie n tific e f f o r t a n d p r e s e n ts a c h a lle n g e f o r th e th e o r y a n d p r a c tic e o f P u b lic H e a lth w h ich , in c id e n ta lly , w ill h e n c e f o r th b e e v o lv in g in G e r m a n y , to o .
4. Approaches to prevention
O n e o f th e fe w fin d in g s in th is c o n te x t c o n s id e r e d to b e c e rta in to d a y is th e f a c t th a t p r e v e n tio n b e h a v io r , b o th p a s t a n d p r e s e n t, g a in s g ro u n d m o re q u ick ly , m o re e f f i
cacio u sly , m o r e d u r a b ly a n d m o re e x te n s iv e ly , th e m o r e a r e g ro u p s ta r g e te d b y su c h p o licy s p o k e n to a s m e m b e rs o f b e lo n g in g e ith e r to s o c ia l c o n te x ts s h a p e d b y life sty le s, to a s o c ia l m o v e m e n t, o r to a s u b c u ltu re (s e e f o r in s ta n c e P r ie u r 1991). A s it tu rn s o u t, th e u s u a l G e r m a n tr a n s la tio n o f " c o m m u n ity a p p ro a c h " w ith " G e m e in d e o rie n tie r u n g "
re s u lts in m is u n d e rs ta n d in g e v e n a m o n g s c ie n tis ts w o rk in g in th e h e a lth fie ld . I n th e w a k e o f A ID S , " c o m m u n itie s" a r e n e ith e r c o m m u n itie s in th e a d m in is tra tiv e se n se , n o r a re th e y g ro u p s d e f in e d fro m th e o u ts id e b y c o m m o n risk f e a tu r e s , b u t th e y a r e so c ia l s tru c tu re s , c o n s titu te d by th e s a m e r e f e r e n c e s in life sty le s, in te re s ts , s o c io -c u ltu ra l b a c k g ro u n d s , s y m b o ls a n d ritu a ls . S u c c e ssfu l p ro je c ts o f p r e v e n tio n a n d h e a lth p r o m o tio n (s e e S y m e 1991; M in k le r 1985) sh o w t h a t th e s e s tru c tu re s , a t le a s t in u r b a n c o n tex ts, o f f e r s tr o n g e r b a s e s o f r e f e r e n c e f o r p r e v e n tio n th a n th e c o n d ito n o f s im p ly liv in g in th e s a m e c ity ( R a s c h k e / R i tt e r 1991). T h is o r ie n ta tio n m a k e s p o s s ib le , in a lo g ic a lly rig o ro u s f a s h io n , th e tra n s itio n f r o m p u r e h e a lth e d u c a tio n to s tr a te g ie s o f p r e v e n tio n
which include the social, cognitive, physical und psychological strains and resources of the target groups. Such a "lifestyle concept" has been propagated by the WHO for several years.
If a rational societal risk management is the task of Public Health, then it follows that strengthening socio-ecological contexts as biotopes of a healthy life will become a basic task of health politics. Results from organizational sociology (see W. Streeck 1987) and from research on self-help (see A. Trojan 1986) have suggested for a long time that traditional organizations such as trade unions, churches and political parties, not to speak about health insurance risk pool groups are becoming less and less suited for this because of their dwindling and at any rate miniscule ability to induce bonding. Small and informal networks will become - with great class- or group-specific differences - more and more the functional equivalent, although often needing socially sensitive stimulation and support. How a national health policy can relate to such groups, net
works and subcultures, without undermining their autonomy and authenticity necessary for the policy’s success, is an old question of social politics gaining new relevance in the foreground of AIDS.
Besides target-group specifity of prevention, another factor of success in
AIDS-prevention can generally be considered relatively certain: this is personal and empathic counseling, whether professionally organized or informally. Experiences collected in the context of AIDS-prevention do not, remarkably, suggest that a phys
ician’s counselling is superior to that done in other constellations or settings. Whether this is independent of social class, and just how this knowledge can be used to improve the division of labor between the different health care professionals (regardless whether these medically treat and care for or counsel patients), remains a question still to be ex
amined in terms of Public Health.
Finally, on the basis of experiences with AIDS, one must proceed on the assumption that medical examinations - in this case, the HIV-antibody test - are rather inef
ficient instruments for behavior modification. The statement, often put forward as dogma in the debate on AIDS, to the effect that only someone cognizant of his serological status behaves in accordance with prevention measures, has been refuted rather strikingly by a study by Higgins et al. (1991) recently published in the Journal of the American Medical Association and coming out of the Centers for Disease Control.
This is a reevaluation, careful in method, of all 50 identifiable studies done on this issue from 1986 till July 1990. It finds no evidence whatsoever for the above test being a suitable means to change someone’s behavior. Also, a single professional counseling
se ssio n in r e la tio n w ith th e te s t (in a U S -A m e ric a n S T D -C lin ic ) d id n o t c h a n g e m u ch , e ith e r ( Z e n ilm a n e t al. 1992). C o n s id e rin g th e v e ry s e rio u s a n d u n d e s ir e d e ffe c ts o f d e te c tin g a n d c o m m u n ic a tin g th e H I V -s e ro -s ta tu s , a n d th e u n c e rta in tie s , w h ich c a n n o t b e to ta lly d isp e lle d , o f th e H I V -a n tib o d y -te s t, th e p ro p a g a tio n o f th e te s t as a n in
s tr u m e n t o f p r e v e n tio n m u st b e r u le d o u t (R o s e n b ro c k 1986, 1989 a, 1991 a ). P re v e n tiv e f e a tu r e s t h a t h a v e p r o v e d to b e im p o r ta n t, h o w e v e r, a re s o c ia l in te g r a tio n , th e q u a lity a n d p ra c tic a b ility o f th e p r e v e n tio n m e s s a g e , a n d p e rs o n a l c o u n s e lin g . A n e x a m in a tio n o f th e s e fin d in g s o n th e b a sis o f o th e r e a rly d ia g n o sis te s ts - w h ic h by th e 1989 h e a lth r e fo rm la w w e re m a d e a n o rm a l s e rv ic e p r o v id e d b y h e a lth in s u r a n c e a n d w hich , lik ew ise, o n ly m a k e s e n se if b e h a v io r c a n b e a f f e c te d su c e ssfu lly by th e m (e . g. in th e c a s e o f d ia b e te s a n d c h o le s te ro l, s e e A b h o lz 1988) - re m a in s a ta s k still to b e c a rr ie d o u t by
P u b lic H e a lth re s e a rc h .
S u p e r-im p o s e d in m a n y w ay s o n th e f a c tu a l issu e o f h o w to o p tim iz e c o n d itio n s f o r su c cessful c o u n s e lin g a n d b e h a v io r m o d if ic a tio n , h o w e v e r, h a v e b e e n fig h ts f o r p o w e r a n d s p h e re s o f in flu e n c e fro m " p ro fe ss io n a l" p o litic s, a b o v e a ll f r o m th e m e d ic a l p ro fe s s io n (cf. A b h o lz 1990; R o s e n b r o c k 1992a, 1992b). T h is is, in d e e d , a n iss u e to o f o r P u b lic H e a lth .
Despite wide gaps in knowledge - in which, confronted with a threat like AIDS, it has often been necessary to act on the basis of mere plausibility - there has evolved, as an established core for preventive behavior, the model of a predominantly non-medical strategy taking into account supporting life-styles and milieus of target groups. This strategy, making special use of personal communication and counseling and by means of education about risks and their avoidance, creates and stabilizes incentive systems that aim to establish and consolidate group-related norms for avoiding risk behavior (see also Deutscher Bundestag 1988).
Prevention and curative medicine, while sharing the aim of health protection, have one more thing in common: almost everything that proves to be effective has unwanted ef
fects, too. With the prevention model sketched here, there likewise can evolve, under unfavorable political cirumstances, undesired effects. This concerns, for example, the dangers of increased public control over individual behavior, the possibility for ma
nipulation and the problem of excluding those who are not able or do not want to follow the prevention message. In examining the transferability of the prevention model to other health risks and population groups, the investigation and minimization of such un
desired effects, therefore, is an important task for Public Health research.
5. Stabilization of self-help groups
Even the academic research on self-help (cf. Trojan, in: Rosenbrock/Salmen 1990) has, until now, hardly reflected on one spontaneous innovation in the social treatment of the AIDS-problem: While until the appearance of AIDS self-help groups and the
movement for self-help in our country have developed almost exclusively to cope psy
chologically, socially and medically with currently existing health risks, that is, with tasks belonging to tertiary prevention (e.g., alcoholism, cancer, epileptic diseases, rheuma
tism), for AIDS self-help there evolved an organization which, at least in the first years of the epidemic, worked with the same vigor to prevent infection, that is, it worked in primary prevention. For this function it is the greatest recipient of public support. From the overall perspective of Public Health, it is an important and open question whether this can be done for an indefinite period, or, to express the matter in a now fashionable term, for a "time-stable" period. At present, there can be doubts about this: The efforts at prevention among self-help organizations are evidently diminishing even in the groups mainly affected. This is true for both the local and scene-specific campaigns for stabilization and memory impulses, which are so important to stabilize preventive be
havior, and for he activities relating to group sections which have not, until now, suf
ficiently been reached (gay men "coming out" and living outside big cities, and bisexual men). AIDS-help groups begin to react more and more to the immediate pressure of the problem, becoming organizations representing the interests of those infected and having AIDS. Important and unrenounceable as they are for support of secondary pre
vention and for integrated health care provision and the protection of social rights, nevertheless by doing this they divert attention from primary prevention (Rosenbrock
1986, p. 154). But in the field of primary prevention, likewise, the work of the
AIDS-help groups cannot be dispensed with. It is hard to envision a substitute for the organizations formed by groups affected by the disease, if the latters’ strength and commitment is one day no longer sufficient.
Mainly in bigger cities and liberal environments, Public Health Offices have applied themselves to AIDS prevention and counseling with an unforeseen sensitivity and adap
tability. On the basis of their experiences some offices have even changed their entire profile of action with regard to prevention and health promotion (see Schmacke 1992).
Even if this is (still) the exception, it shows that these institutions are, in principle, capable of innovation. With regard to AIDS, extension and intensification of preventive efforts by Public Health Offices are conceivable and desirable for heterosexual groups at higher risk but without specific social bonds (for example, sex tourists, clients of pro
stitutes from the drug scene). But the feat of initiating changes in behavior and norms within gay subcultures, and therein succeeding, cannot be expected of them.
In te rm s o f h e a lth p o litic s, th e r e fo llo w s fro m th is th e n e c e s s ity o f w e ll-a im e d h e lp a n d s u p p o rt f o r th e w o rk o f A ID S -h e lp g ro u p s in p rim a ry p r e v e n tio n . F o r P u b lic H e a lth re s e a rc h , th e r e a ris e s f r o m th is th e q u e s tio n (a ) o f p o s s ib le a g e n c ie s o f p re v e n tio n in a re a s w h e r e p r e v e n tio n c a n n o t b e b a s e d o n a so c ia l m o v e m e n t b e in g c a p a b le o f a n d m o tiv a te d f o r su c h a c tio n ; a n d (b ) h o w to s ta b iliz e th e c o m m itm e n t to p r e v e n tio n in m o v e m e n ts , s u b c u ltu re s , a n d m ilie u s w h ich , p a ra d o x ic a lly , d e p e n d o n b o th i n d e p e n d e n c e a n d s u p p o rt f ro m th e sta te .
6. Professional responsibilities
Health research in the last decades has again and again confirmed findings that medical intervention on an individual basis contributes, from the perspective of epidemiology, only little to prolonging life (Dubos 1959; Powles 1973; Taylor 1979; Abholz 1980;
McKeown 1982; McKinlay/McKinlay 1987; Marmot/Kogevinas 1987). In addition, it is known that even for the vast majority of patient treatments recognized by classical medicine, there has been no clinical-epidemiological evidence of effectivity (Cochrane
1972). On the other hand, it has often been shown that self-interest and the natural dy
namics of the medical system’s functioning tend to extend the area of responsibility to an increased number of groups in the population and particular physical conditions (Foucault 1973; Rosenbrock 1992b). So it is no surprise that questions about the benefits of medicine and the limits of medicalization come up in connection with
HIV-infection. In this context it is not worth mentioning medical suggestions for pri
mary prevention. Without scientific foundation and without taking into consideration - individually and socially - unwanted effects, many physicians have considered tracing HIV-infected persons by means of the HIV-anti-body-test (being a genuinely
medical intervention) the highest goal for prevention (Bock et al. 1987; Frösner 1987, on this: Rosenbrock 1986, 1989a, 1991b). Rather, the responsibility of medicine in second
ary prevention is the subject of controversy. This is because, through the application of azidothymidine (AZT, zidovudine; Trademark; Retrovir) and pentamidine substances to persons clearly suffering from ARC or AIDS, the disease’s progression can at least for a limited time be slowed down (Fishl et al. 1987; Sattler et al. 1988). Consequently, for persons who, though infected by HIV, show no symptoms and have less than (depending on the medical faction) 500 or 350 or 200 T-4-cells, the question arises whether doses of these substances can delay the outbreak of disease, alleviate the en
suing suffering and/or prolong life. Some physicians think the existing studies to be so convincing that they (in some cases departing from their original attitude) want to call in all people at risk of infection for tests for the HIV-antibody. By thus starting earlier
with medical treatment (inhalation of pentamidine, AZT-medication), a longer latent period or life expectancy may be achieved (in Germany see Jäger 1989; Frösner 1991).
Meanwhile, the Deutsche Aids-Hilfe also tends to embrace this view (Poppinger
1991a, 1991b), without, however, drawing the consequences that would lead to calling in for testing the groups mainly affected by the disease, having made a political decision against doing so (Hengelein/FIöpfner 1990). Instead, the Deutsche Aids-Hilfe advocates an individual decision (so does Rosenbrock 1989b,1989c). For potentially-infected un
tested and for asymptomatic HIV-positive individuals, there emerges, against the background of their anxieties and fears from circulating reports of success, a strong pull to take the test or to start medical treatment before the first symptoms appear. It seems that in this context there is common ground between affected persons needing and seeking help, physicians wishing to provide it, pharmaceutical firms aiming at increasing their sales, and politicians who look favorably on an approach to epidemic control that starts with the individual. To an extent commenusrate with their promise, large inter
vention trials (HIV-models in Frankfurt and Köln/Bonn/'Aachen) are being
financially supported and publicized (Brede et al. 1991; about the discussion of these models: Deutscher Bundestag 1990b).
The widely-shared, positive appraisal of the practice of beginning medication before the appearance of the first symptoms (and with this, an appreciation of the
HIV-antibody-test as the ticket to this treatment), can be explained more readily
from the above-posited constellation of interests than it can from existing studies of this approach. To justify their proposal for long-term medical attention of the HIV-infected, even those displaying no symptoms, Brede et al. have published results showing the number of T-4-cells in 12 treated HIV-infected patients dropping within the control span of 24 months (a time anyway to short for generalized therapeutic recommen
dations) even more than for 17 untreated persons (Brede et al. 1991, table 3, p. 1538, and table 5, p. 1540). Without any further clinical evidence of the usefulness of early in
tervention, they use this data base to object to the "appearance ...that only upon clinical manifestation of the disease (including opportunistic infection) has the need for medical intervention arrived" (ibid., p. 1536). As for numerous recommendations for early diag
nosis tests to allow earlier individual treatment (which always means medicalization), an evaluation of the effectiveness and efficiency of this strategy of diagnosis and treament is out of the question (Abholz 1988, 1990):
I . A s so o n as e a rly t r e a tm e n t c o m e s u n d e r d isc u ssio n , n o a tte n tio n is p a id to th e th e f a c t th a t th e c o m m u n ic a tio n o f a p o sitiv e r e s u lt o f a H IV -a n tib o d y - te s t b rin g s
with it considerable und long-term unwanted effects on health and psycho-social condition, and to undispellable uncertainties.
2. There is insufficient problematization of the fact that the strategy of testing and early medication leads to life-long medicalization of people who, in their vast majority, would stay without symptoms and ailments for years. Taking as a basis the distribution from the study of Fishl et. al. (1987), about 1000 asymptomatic HIV- infected persons with less than 500 T-4 cells would have to be treated with AZT for a year to prevent around 25 cases of disease progression out of the ap
proximately 50 cases expected without medication: more than 95 percent of the patients would thus be treated uselessly.
3. It has not been pointed out often enough that with early or pre-mature doses of AZT there in many cases develops an equally early or premature resistance, so that the medicament can no longer be used in case of disease.
4. The unwanted effects (above all with AZT) are played down, or, because of the too-short periods of the studies, are systematically underestimated.
5. Often, it is not made clear that in the vast majority of AIDS-cases, the disease begins with slight but identifiable symptoms; without harm to the patient, the be
gin of medication can wait until these symptoms appear. Even a rare dramatic on
set of AIDS (mostly with a PCP) can be medically relatively well controlled by now. In comparison to pentamidine-prevented PCP, a shortening of life from such untreated disease progressions could not be demonstrated (Hirschel et al. 1991).
6. The impact of early medication is overestimated to an astonishing degree: Gen
erally, the studies on early treatment with AZT and pentamidine, primarily of asymptomatic HIV-infected persons, show consistently that the appearance of symptoms can temporarily be stopped in a small number of treated persons. There are, however, no suggestive or statistically significant results that life can be pro
longed by the use of these medicines (Graham et al. 1991; Moore et al. 1991;
Hamilton et al. 1992).
7. The gain in the quality of life, achieved by protraction or elimination of opportun
istic infections, is greatly overestimated and not related to the loss in quality of life from knowledge of one’s sero-status, from unwanted effects of medication, from
th e p o s s ib le s a c rific e o f l a t e r p o s s ib ilitie s f o r t r e a tm e n t c a u s e d b y re s is ta n c e , a n d a b o v e all f ro m a life lo n g m e d ic a liz a tio n .
A f te r th e in itia l h o p e s o f a b r e a k th r o u g h in th e r a p y a n d s e c o n d a ry p r e v e n tio n ra is e d by A Z T a n d p e n ta m id in e , d is illu s io n m e n t h a s n o w c le a rly s e t in ( C o r f y /F le m in g 1992;
L a n c e t 1992). It r e m a in s to b e s e e n w h e th e r th e m o d e ls o f "calls f o r te s tin g a n d e a rly m e d ic a tio n " , tr a n s f e r r e d f r o m th e U S A to G e r m a n y in th e in itia l e u p h o ria , will n o w b e r e e v a lu a te d . T h is e v a lu a tio n m u st s ta r t fro m a c ritic a l a s s e s s m e n t o f e x istin g s tu d ie s a n d th e ir m e th o d s , m u st b e b a s e d o n th e c r ite r ia o f e ff e c tiv e n e s s a n d e ffic ie n c y , a n d m u st as w e ll c o n s id e r p s y c h o lo g ic a lly a n d so c ia lly u n w a n te d e ffe c ts . If th is is n o t d o n e now , th e c o n flu e n c e o f d iv e r s e -s e c to r in te r e s ts in th e e x is te n c e o f su c h a p o s s ib le tr e a tm e n t c o u ld , in c o n ju n c tio n w ith n a tio n -s p e c ific te c h n ic a l-a g g re s s iv e m e d ic a l c u ltu re fo u n d f o r in s ta n c e in th e U S A ( P a y e r 1988), p re v a il o v e r th e sa d fa c ts a n d th e u n c e rta in ty o f th e fin d in g s.
In c o n n e c tio n w ith th is, th e e x te n s io n o f th e m e d ic a l p r o f e s s io n ’s fie ld o f re s p o n s ib ility to c o v e r "su b jectiv ely " h e a lth y in d iv id u a ls c o u ld b e p r o m o te d by th e a im o f C D C .
T h e s e w o u ld c la ssify th e sta g e s o f th e A ID s b a s e d o n a n o v e ra r c h in g c o n c e p t o f H IV -d is e a s e w h ic h is in d e p e n d e n t o f s y m p to m s d isp la y e d : all H I V - in fe c te d p e rs o n s w ith less th a n 200 T -4 cells w o u ld b e d e fin e d as b e in g sick w ith A ID S . In o th e r v e rs io n s a n o th e r d e fin itio n ("sick w ith H IV " ) a p p lie s a t th e o c c u rr e n c e o f in fe c tio n ( s e e th e c o n tro v e rs y in: D e u ts c h e r B u n d e s ta g 1990b; J a e g e r 1991). W h e n p o in tin g to th e le a d in g ro le o f th e U S A , th e r e o f te n is a f a ilu r e to s e e th a t, b e c a u s e o f th e u tte r ly in s u ffic ie n t p r o te c tio n p r o v id e d by h e a lth in s u r a n c e (K ü h n 1990), c la s s ific a tio n s b a s e d o n th e s ta tu s o f b e in g h a n d ic a p p e d o r h a v in g a d is e a s e m ay s e rv e as a f o rm o f p r o te c tio n f o r p e o p le o th e rw is e u n p r o v id e d f o r by w e lf a r e - s ta te m e c h a n is m s (S to n e 1985). T h is fu n c tio n , h o w e v e r, d o e s n o t fo llo w f r o m c rite r ia th a t c a n id e n tify w h e n m e d ic a l t r e a tm e n t is n e c e s s a ry . C o n s e q u e n tly , th e a lte r a tio n o f e p id e m io lo g ic a l c o u n tin g by in c lu d in g e v e n H IV -in fe c te d p e rs o n s w h o a r e s u b je c tiv e ly h e a lth y is r e je c te d by E u r o p e a n p h y sic ia n s f ro m c o u n trie s w ith b e tt e r w e lfa r e s ta te p ro v is io n s (v a n G r ie n s v e n e t al. 1991; P a rk
1992).
F ro m a g e n e ra l p e rs p e c tiv e , o n e c a n a d h e r e to th e ju d g e m e n t t h a t m e d ic a l a rg u m e n ts ju stify in g th e "re sp o n sib ility " o f m e d ic in e f o r su b je c tiv e ly h e a lth y H IV -p o s itiv e p e r so n s a re n o t v e ry v a lid . T h e calls f o r H IV -te s tin g as a n a v e n u e to e a rly m e d ic a tio n o f s u b je c tiv e ly h e a lth y p e rs o n s a re , th e r e f o r e , b e c a u s e o f in s u ffic ie n t c o n s id e r a tio n o f w a n te d a n d u n w a n te d e ffe c ts c a u s e d b y s c re e n in g a n d th e a b s e n c e o f a tr e a tm e n t th a t
has b e e n te s te d c lin ic a lly -e p id e m io lo g ic a H y f o r s u ffic ie n t e ffe c tiv e n e s s , h a rd ly c o m p a tib le w ith s c re e n in g r u le s ( W ils o n /J u n g n e r 1971; R o s e n b r o c k 1986, pp. 101-115).
T h e u n d if f e r e n tia te d p r o p a g a tio n o f th is t r e a tm e n t c a n s e rv e as a n e x a m p le o f th e f a ilu re o f c lin ic a l-e p id e m io lo g ic a l s ta n d a rd s in th e in tr o d u c tio n a n d m a rk e tin g o f n e w m e d ic a l p ro d u c ts a n d a p p lic a tio n s ( C o c h ra n e 1972), a n d f o r th e c o n fu s io n o f ( no d o u b t n e c e s s a ry ) clinical r e s e a r c h a n d te s ts w ith th e ir a p p r o p r ia te g e n e ra l use.
F ro m th e p e rs p e c tiv e o f th e p o litic s o f h e a lth re g u la tio n , a g e n e ra l q u e s tio n a ris e s a b o u t th e m e c h a n is m s th a t m a y s e rv e to a im th e p o w e rs a n d r e s o u r c e s o f b io lo g ic a l m e d ic in e a t th o se p ro b le m s a n d c o u rs e s o f th e d is e a s e f o r w h ic h o n ly m e d ic in e can re a lly o f f e r h e lp (cf. R o s e n b r o c k 1986, p p . 129-132).
P ro v isio n s f o r a n d c a re o f a s y m p to m a tic H IV -p o s itiv e p e rs o n s r e q u ir e th a t e n h a n c e d w ays o f n o n -m e d ic a l p r o fe s s io n a l a n d s e lf-h e lp s u p p o r t b e s o u g h t o u t a n d im
p le m e n te d , as h a s b e e n d o n e f o r o th e r g ro u p s o f c h ro n ic a lly ill p e rs o n s . F o r th is a basis is p ro v id e d by e x p e rie n c e s w ith p sy c h o -so c ia l s u p p o rt in o t h e r g ro u p s o f p a tie n ts , w h o - like te s te d H I V - in fe c te d p e rs o n s - liv e w ith a c o n c r e te (th o u g h in c a lc u la b le in d i
v id u a lly ) p o ssib ility o f a n ( r e n e w e d ) o u tb r e a k o f a lif e - th r e a te n in g d ise a se . T h e r e c o m e s to m in d h e re , f o r e x a m p le , th e p h y sic a l c o n d itio n a f t e r a c a rd ia c in fa r c t (B a d u ra e t al. 1987), o r a f t e r t r e a tm e n t f o r c a n c e r ( K o c h /P o tr e c k - R o s e 1990; W im m e r 1988).
A s in all c h ro n ic d ise a s e s, th e in d iv id u a l w ish o f th e in f e c te d o r ill p e rs o n , b a s e d on c o m p le te in fo r m a tio n a b o u t c h a n c e s a n d risk s o f t r e a tm e n t s tra te g ie s , s h o u ld b e th e d e cisive c rite r io n f o r th e f o rm o f c o p in g p sy c h o lo g ic a lly a n d so c ia lly w ith a p o s itiv e te s t r e su lt ( F r a n k e 1990) a n d th e d is e a s e itse lf: m e d ic a l s u p e rv is io n , p a rtic ip a tio n in g ro u p s o f d ia g n o s e d in d iv id u a ls , p s y c h o th e r a p y o r in d e e d n o th in g a t all, in a d d itio n to all p o s s ib le c o m b in a tio n s o f su c h tr e a tm e n ts , h a v e to b e c o n s id e r e d w ith e q u a lly .
7. Adaptation of health care
A ID S h a s h a s p u t in m o tio n s tr u c tu r e s o f h e a lth c a re p ro v is io n e v e n in a re a s t h a t f o r d e c a d e s w e re th o u g h t to b e e s p e c ia lly re s is ta n t to r e f o r m . T h e r e e m e rg e d (a ) n e w fo rm s o f p ra c tic e a n d c o o p e r a tio n in o u tp a tie n t c a re a n d a rr a n g e m e n ts b e tw e e n p ra c tic in g p h y s
icians a n d h o s p ita ls ; (b ) n e w r o le s f o r th e p sy c h o -so c ia l p ro fe s s io n s ; (c) n e w m o d e ls o f a m b u la to ry a n d n u rs in g c a r e f o r th e s e rio u sly - a n d m o st-se rio u s ly -ill; (d ) o rg a n iz a tio n a l in n o v a tio n s in h o s p ita ls , d a y clin ics a n d h o sp ic e s; a n d ( e ) n e w m o d e ls o f in c lu s io n o f se lf h e lp r e s o u rc e s in to th e h e a lth c a re sy stem . In s h o rt: w ith A ID S , th e r e h a s b e e n a s h ift in th e p a tte r n s o f th e d iv is io n o f la b o r a n d th e a s s ig n m e n t o f ta s k s f o r p a r tic ip a tin g h e a lth p ro fe ssio n s, f o r h o n o r a r y h e lp e rs , a n d b e tw e e n in s titu tio n s f o r in- a n d o u t-p a tie n ts
( S c h a e f f e r /M o e r s /R o s e n b r o c k , 1992). T h e d isc u ssio n o f th e im p o r ta n c e , in its o w n rig h t, o f n u rsin g f o r c o p in g w ith d is e a s e h a s g a in e d n e w im p e tu s ( M o e r s 1990). H e a lth c a re f o r p e rs o n s w ith A ID S h as b e c o m e a n e x p e rim e n ta l fie ld f o r s tr u c tu r a l re fo rm s o f th e P u b lic H e a lth se rv ic e . In a stu d y o f o u r r e s e a rc h g r o u p " H e a lth R is k s a n d P re v e n tiv e Policy" a t th e W is s e n s c h a fts z e n tru m B e rlin , th is issu e is b e in g e x a m in e d f o r B e rlin . In th is, c e rta in ly , th e g ra y a r e a s o f th e m a t te r b e c o m e a p p a r e n t, to o , a n d th e y w ill h a v e to b e f u r th e r in v e s tig a te d in th e f r a m e w o r k o f P u b lic H e a lth re s e a rc h : d e s p ite th e e x c e p tio n a lly hig h re a d in e s s o f p o litic a l a n d p ro fe s s io n a l g ro u p s to m e e t th e n e w c h a lle n g e , th e r e h a v e b e e n u n til n o w o n ly fe w d u r a b le su c ce sse s a ffe c tin g s tru c tu re s .
T h is lac k o f su c ce ss in c h a n g in g s tr u c u re s is n o t p rim a rily d u e to th e f e d e r a l g o v e rn m e n t’s s to p p in g o f fu n d in g o f s u b s id iz e d m o d e ls f o r w h ic h th e r e w a s n o s u b s titu te . R a th e r, it is b e c a u s e w e ll-d e v is e d in n o v a tio n s - lik e th e c o o r d in a tio n n u rs e s r e s p o n sib le f o r th e tr a n s f e r f r o m in- to o u tp a tie n t c a re o r lik e th e A ID S -s p e c ia lis ts in P u b lic H e a lth O ffic e s - h a v e o f te n b e e n im p le m e n te d w ith o u t s u ffic ie n t tra in in g a n d social p r e p a r a tio n a n d w ith o u t in c lu sio n o f th e o r g a n iz a tio n a l e n v ir o n m e n t (S c h a e f fe r 1991).
S o lita ry s o lu tio n s w ith o u t a id s f o r im p le m e n ta tio n (se e o r g a n iz a tio n a l d e v e lo p m e n t a n d c o u n s e lin g o f in s titu tio n s ) p ro v o k e c o n s e rv a tiv e o r g a n iz a tio n a l b e h a v io r le a d in g e v e n to re je c tio n . C o n tr a r y to w id e ly e n te r ta in e d h o p e s a n d to a c tu a l p ra c tic e , su ch d iffic u ltie s c a n n o t b e d o n e a w a y w ith e v e n by a c c o m p a n y in g re s e a rc h a n d p ro fe s s io n a l su p e rv is io n . T h e r e a s o n is th a t b e c a u s e o f th e ir p ro file a n d in s tr u m e n ta tio n , th e la t te r c a n n o t p r o v id e e ffe c tiv e r e g u la tio n a n d c o rr e c tio n f o r o b s ta c le s to im p le m e n ta tio n f ro m o rg a n iz a tio n s a n d p o litic a l fo rc e s in th e p ro fe s s io n s c o n c e r n e d ( S c h a e f fe r 1992). In a d d itio n , th e r e a re p r o b le m s o f in s u ffic ie n t a n d m ix e d fu n d in g . M a n y n u rsin g se rv ic e s a re th u s fo rc e d to s tre tc h th e leg al lim its w h e n d o c u m e n tin g a n d a c c o u n tin g f o r th e p r o fe s s io n ally n e c e s s a ry s e rv ic e s in th e ir d e a lin g s w ith h e a lth in s u ra n c e s c h e m e s , c o m m u n ity a d m in is tra tio n s a n d o th e r p a y in g in s titu tio n s , u n til th e y n o lo n g e r b a s e th e n u rsin g se rv ic e s p rim a rily o n h e a lth c rite ria , b u t r a t h e r o n a c c o u n tin g c o n s id e r a tio n s ( s e e f o r e x a m p le , M a je r a n d W e b e r, in: S c h a e f f e r / M o e r s /R o s e n b r o c k 1992). B e c a u s e o f th e s e s tru c tu ra l p re s s u re s , a lo t o f c o m m itte d e n th u s ia s m is b e in g w o rn out.
F ro m a P u b lic H e a lth p e rs p e c tiv e , th is m e a n s f o u r th in g s:
1. T h e sy ste m o f h e a lth c a re is, e v e n w ith re g a rd to its f u n d a m e n ta l s tr u c tu r e a n d its p ro fe s s io n a l d iv isio n o f la b o r, m o re fle x ib le th a n o f te n a s su m e d .
2. E s p e c ia lly in th e a r e a o f o u tp a tie n t c a re , th e d e m a n d o f th e
G K V - B u n d e s ta g s - E n q u e te in 1990, to a c k n o w le d g e a n d t h e r e f o r e to p ro m o te a n d s u p p o rt m e d ic a l, p sy c h o -s o c ia l-n u rs in g c a re a n d a c tiv a tio n o f th e p a tie n t’s
e n v ir o n m e n t a s t h r e e p illa rs , fu n c tio n in g e a c h in its o w n rig h t ( D e u ts c h e r B u n d e s ta g 1990a), w as a d e q u a te to th e p ro b le m a n d b a s ic a lly p ra tic a b le .
3. A s rig h t as it is to u s e p o lic y w in d o w s lik e th e A ID S crisis f o r s tru c tu ra l in n o v a tio n , it is n o w m o re n e c e s s a ry th a n e v e r b e fo re to use a ll a v a ila b le e x p e rie n c e s in in n o v a tio n m a n a g e m e n t. A n e x a m p le a r e in n o v a tio n s f ro m th e so c io lo g y o f o rg a n iz a tio n s a n d in d u stry . In d e m a n d a re sy ste m ic so lu tio n s, v ie w in g th e in n o v a tio n s a n d r e f o r m e ffo rts f r o m th e o u ts e t in th e ir in te rp la y w ith d e v e lo p e d s tru c tu re s , a n d p re p a r in g th e s e by q u a lif ic a tio n a n d o rg a n iz a tio n a l m e a s u r e s (cf. f o r e x a m p le W il
d e n m a n n 1988; W e ltz /L u llie s 1983).
4. T h e e n th u s ia s m o f a n d re s u ltin g p e rs o n a l n e tw o rk s b e tw e e n p io n e e rs o f
A ID S -h e a lth c a re w e re n e c e s s a ry c o n d itio n s fo r e v o lv in g su c ce ssfu l in n o v a tio n s . T h e y r e m a in th e d e e p e s t s o u rc e o f su c ce ssfu l in n o v a tio n s . W ith o u t s tru c tu ra l s u p p o r t, a n d th is im p lie s a ta s k -frie n d ly o rg a n iz a tio n a l e n v ir o n m e n t f o r th o s e w h o jo in th e fo rc e s less as p io n e e r s a n d m o re as p ro fe s s io n a ls , th is d riv in g f o rc e is w e a k e n e d r a t h e r th a n s tr e n g th e n e d .
F o r P u b lic H e a lth r e s e a r c h o n h e a lth c a re , th e e v a lu a tio n o f e x p e rie n c e s c o lle c te d w ith A ID S o ffe rs a b u n d a n t m a te r ia l w ith w h ic h s o lu tio n s c a n b e g e n e ra liz e d a n d e rr o r s a v o id e d . W h e n a p p ly in g th e s e e x p e rie n c e s to a d d re s s , w ith a c o n c e p t a im e d a t th e i n te g ra tio n o f se rv ic e s, th e in c re a s in g d is in te g r a tio n o f th e G e r m a n f e d e r a l h e a lth c a re system a n d in p a r tic u la r its t r e a tm e n t o f c h ro n ic a lly ill p e rs o n s , it h as p r o v e n f ru itfu l to c h o o se th e sp e c ific n e e d s f o r c a re d e p e n d in g b o th o n d iff e rin g life s itu a tio n s a n d o n th e d e m a n d s s p e c ific to e a c h d is e a s e a s a s ta rtin g p o in t f o r a n a n a ly sis. F ro m th e r e c a n b e tra c e d o r c o n c e iv e d w ay s a c ro s s th e d iv e rs e o ffe rs a n d g a p s in s e rv ic e p ro v is io n , w h ich m e a n s p r e c e e d in g f r o m a n e tw o rk o f d if f e r e n tia te d p a tie n ts ’ p a th s ( ’tr a je c to r ie s ’, c f . S tr a u s s /C o r b in 1991).
8. Health as an issue of social movements
E v e n a by n o m e a n s c o m p le te list o f P u b lic - H e a lth - r e le v a n t fin d in g s a n d q u e s tio n s b ro u g h t a b o u t by th e A ID S -c ris is s h o u ld n o t go w ith o u t o f f e r in g s o m e re m a rk s , a t le a s t in th e fo rm o f s h o rt p ro p o s itio n s , o n th e ro le o f so c ia l m o v e m e n ts in h e a lth p o litics.
T h e r e a r e t h r e e o b s e rv a tio n s f r o m w h ic h to p r o c e e d : (a ) im p o r ta n t h e a lth -p o litic a l d e cision s a n d d e v e lo p m e n ts in h isto ry h a v e n e a rly a lw a y s b e e n a n d still a r e a t le a s t in p a rts th e re s u lt o f p r e s s u r e f r o m so cial m o v e m e n ts ; (b ) e a c h o f th e o ld a n d n e w so c ia l m o v e m e n ts h a s lis te d h e a lth - r e la te d issu e s r a th e r hig h o n t h e i r p o litic a l a g e n d a ; a n d
(c) so c ia l m o v e m e n ts o w e a g o o d d e a l o f th e ir c a p a b ility to m o b iliz e a n d f o rm a llia n c e s to su c h h e a lth - r e la te d issues. T h is is th e c a se f o r th e la b o r m o v e m e n t. It is tru e as w ell f o r th e w o m e n ’s, th e e c o lo g y a n d th e p e a c e m o v e m e n ts . O f c o u rs e , th is is n a tu r a lly th e c a se f o r th e gay m o v e m e n t; th is b e in g so, th e r e la tio n s h ip b e tw e e n m e d ic in e , th e s ta te a n d g a y m o v e m e n t h a s b e e n a n y th in g o th e r th a n u n - p ro b le m a tic a n d p r o b a b ly still is, if y o u th in k o f th e d e c a d e s o f c rim in a liz a tio n , th e d e fin itio n (v a lid u n til n o t to o long a g o ) o f h o m o s e x u a lity a s a d ise a s e , a n d o f th e p a rtly a b s tr u s e a n d c ru e l " th e r a p e u tic e f fo rts" a im e d a t h o m o se x u a l b e h a v io r. In d iffe rin g m e a s u r e a n d w ith d if f e r e n t e m p h a s is, th is is tr u e f o r all in d u s tria liz e d c o u n trie s , th o u g h in G e r m a n y , t h e r e is in sp e c ia l a d d itio n th e b a r b a r ic b a c k -g ro u n d o f fa s c ism (S c h illin g 1983).
M e a s u r e d a g a in s t th e s e r a t h e r u n f a v o r a b le p re c o n d itio n s a t th e b e g in n in g , th e d e v e l
o p m e n t o f s tra te g y -fin d in g w ith A ID S a n d o f c o o p e r a tio n o f a ll g ro u p s m a in ly a f f e c te d , w e n t s u rp risin g ly w ell in all in d u s tria liz e d c o u n trie s (cf. K i r p / B a y e r 1992): th e b a s ic a n d le a d in g d e c is io n in h e a lth p o litic s b e tw e e n th e s tr a te g ie s o f le a rn in g a n d s e a rc h in g a n d q u e s tio n s o f h o w to d e sig n th e s tra te g y o f le a r n in g a n d th e p r o te c tio n o f b lo o d p r o d u c ts w e re d e c id e d m a in ly in th e tria n g le o f s ta te - m e d ic a l sy ste m - gay m o v e m e n t. T h a t th is h a d , in G e r m a n y , a m o re sh rill s o u n d to it th a n in m o st c o u n trie s c a n b e e x p la in e d to a c o n s id e r a b le d e g re e by th e r e la tiv e ly lim ite d s tr e n g th o f th e gay m o v e m e n t in th is c o u n try ( S a lm e n /E c k e r t 1989) a n d by th e d o m in a n c e o f e x p e rtis e in th e fie ld s o f in d iv id u a liz e d m e d ic in e a n d law a c tin g as p o litic a l a d v is e rs. T h a t d e s p ite th e s e u n fa v o r a b le c o n d itio n s th e r e e m e r g e d a n in te r n a tio n a lly p r e s e n ta b le p o litic a l r e su lt in G e r m a n y c a n b e e x p la in e d , h o w e v e r, w ith th e r a p id e s ta b lis h m e n t o f th e
A id s -H ilfe n (a s a n s u b s titu te f o r th e w e a k g ay m o v e m e n t) as c e n tr a l a n d d e c e n tra liz e d a c to rs , a n d w ith th e in te r n a tio n a l p re s s u r e f o r s ta n d a r d iz a tio n . A t th is p o in t th e sig n ifi
c a n c e to P u b lic H e a lth o f a n a ly z in g th e d e c is io n p ro c e s s in o r d e r to e x p la in a n d a ff e c t h e a lth p o litic s b e c o m e s c le a r.
In his r e c e n t a n a ly sis o f "A ids, A c tiv is m a n d th e P o litic s o f H e a lth " , th e a m e ric a n R o b e r t M . W ä c h te r (1 9 9 1 a; 1991b), w ritin g f r o m th e p e rs p e c tiv e o f so c ia l m e d ic in e , r e f e rs n o t o n ly to th e hig h fu n c tio n a lity o f th is in c lu sio n w h e n v ie w e d f r o m th e s ta n d p o in t o f d e m o c ra c y a n d c o m p e te n c e , b u t p o in ts to so m e d a n g e rs o f d ire c t in v o lv e m e n t o f so cial m o v e m e n ts in th e p o litic a l d e c is io n -m a k in g . W ä c h te r is c ritiz isin g th e d e c re a s in g d e v o tio n o f th e A m e ric a n gay m o v e m e n t a n d o f A C T U P to p rim a ry p r e v e n tio n a n d th e ir c o n c e n tra tio n o n th e d e v e lo p m e n t, licen sin g , te s tin g a n d d is trib u tio n o f n ew d ru g s a g a in s t A ID S . H is e x p la n a tio n f o r th is im b a la n c e is th e so c ia l b a c k g ro u n d o f th e m a jo rity o f a c tiv ists: f o r th e le a d in g w h ite m id d le -c la s s h o m o s e x u a ls , th e p ro b le m s o f s a fe r sex a n d p r e v e n tio n h a v e b e e n e s se n tia lly so lv e d . In th is w ay, th e r e is no lo n g e r suf-
