das, das and coutinho - disease control and immunisation - a sociological enquiry

Disease Control and Immunisation: A Sociological EnquiryAuthor(s): Veena Das, R. K. Das, Lester CoutinhoSource: Economic and Political Weekly, Vol. 35, No. 8/9 (Feb. 26, 2000), pp. 625-632Published by: Economic and Political WeeklyStable URL: http://www.jstor.org/stable/4408959Accessed: 22/10/2008 17:57

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I Speciall arles__

Disease Control and Immunisation

A Sociological Enquiry

Understanding the processes through which immunisation comes to be institutionalised as a routine practice in public health management provides an interesting field of sociological

enquiry. A wide range of issues may be examined in this field: processes of state formation in relation to public health, the practices of science in developing countries, the role of global

institutions and policy formation, the construction of the inotions of consent as well as of citizenship, the relationship between the politics of the day and research institutions, and so on.

These dimensions of public health need to be seriously addressed at the policy level.

VEENA DAS, R K DAS, LESTER COUTINHO

T his collection of essays1 addresses questions on immunisation from a social science perspective. Until re-

cently, immunisation as an object of in- vestigation was limited to historians of science and medicine, or to policy-makers concerned with public health issues. Yet, understanding the processes through which immunisation comes to be institutionalised as a routine practice in public health management provides an excep- tionally interesting field of enquiry. It opens a window to a wide range of issues pertaining to popular conceptions of immunity, the processes of state formation in relation to public health, the practices of science in developing countries, the role of global institutions as well as notions of citizenship and consent. We hope that the following essays will contribute to the growing literature in this field. The essays are based on the analysis of policy documents, health surveillance reports, historical archives, and fieldwork over a number of sites including villages, urban slums, primary health centres, ministries of health, hospitals, and courts of law. The methods of analysis are also diverse ranging from statistical projections, participant observations, and ethnographic interviews, to discourse analysis. All the authors worked as a closely-knit team in this project - hence we prefer to draw attention to some of the salient findings of the project, as a whole, rather than summarise each individual essay. These

findings, we hope, will have relevance for both social science research and public health management in India.

Immunisation against smallpox as part of the public health programmes under both the colonial regime and some of the princely states has a long history in India. Even before the discovery of Jenner, variolisation was known and practised selectively in India and China since the seventeenth century. Historians of medicine and anthropologists working on colonial medicine have suggested links between the imperialist project and introduction of biomedicine in the colonies - both are seen to be cut from the same cloth. There is an impressive array of colonial legislation - e g the Compulsory Vaccination Act, Cantonment Act, Epi- demic Diseases Act - through which the body was sought to be colonised, to use the felicitous phrase of David Arnold. who pioneered the study of colonial medicine from a subaltern perspective [Arnold 1993]. The three essays in this collection dealing with historical trajec- tories [by Dasgupta; Misra and Naraindas]* take a close look at the inter- section of legislative power and administrative practices of the colonial state. They show that while in times of epidemics the state did use draconian powers to restrict the liberties of subjects - this exercise of power was sporadic, un- systematic, and often accompanied by strong difference of opinion and hesi-

tancy on the part of different wings of the colonial government. The story of colonial medicine as something, which was implemented as a confident exercise of bio-power in the face of resistance by the subjects, appears, on closer analysis, to be much more complicated. For instance, the scientific status of different theories of disease causation was not settled - hence the state moved between a hygienist theory and practice to one in which disease prone areas were subjected to surveillance and compulsory immunisation. Further, the native populations also showed a differentiated response that ranged from resistance to vaccination to proactive demands for it. Finally, it is clear that though many bureaucratic records speak about 'panic' on the part of native populations in the midst of epidemics, and hence construe the problem in terms of maintaining public order, the response of the communities was, in fact, much more variegated. There were local ideas of prevention, therapeutics and care, which were given no attention in bureaucratic renderings of so-called native responses to epidemics.

A second, important part of the story is the alliance between state and science in this period. The first laboratory produced vaccine to be tested in field trials, viz, the vaccine against Vibrio cholorae was produced in the laboratories of Pasteur in Paris by Haffkine but was tested in India in 1893. These field tests were made

Economic and Political Weekly February 19-26, 2000 625

possible because detailed administrative knowledge about cholera prone areas was already available. The response of the colonial state to the prospect of testing a new vaccine in India was not that of unqualified support. While the British government did not wish to be seen as opposing scientific research in the eyes of other European nations, especially France and Germany, it did not also wish to provoke 'native rebellions'. Hence, it took a stance of being perfectly passive - neither opposing the trials nor endorsing them. It is interesting to see how notions of trust, reliability, and consent were worked out in the field situation in relation to both scientific experimentation and rights of subjects.

Global Programming, National Sovereignty, and Childhood

Immunisation

Despite the heated debates that took place during the British period on compulsory vaccination and the legislative power that the state bestowed upon itself, it is clear that achieving high coverage was never the goal of the British administration. The concern was much more limited - reducing the morbidity of sol- diers and assuring that trade did not get severely affected by epidemics. Thus it was that at the time of independence, when the Bhore Committee was set up to consider the ways and means of reaching health to the large segments of underserved populations, it was estimated that only 3.6 per cent of the population had been covered by smallpox vaccination. This is not the place to review the health delivery system set up after independence, which combines public and private sectors, and has been the subject of many interesting books. It is necessary, however, to point out that the health delivery system is based on territorial organisation rather than on the burden of disease or on local ecology of disease. As is well known, the achieve- ments in public health show considerable variation across the different states in India. A high degree of success has been achieved in the state of Kerala followed by other southern states (except Andhra Pradesh) while the performance in Bihar, Rajasthan, Madhya Pradesh and Uttar Pradesh has been dismal. The puzzle that Kerala also reports higher rates of morbidity as com- pared to Bihar, is likely to be a result of easier access and better utilisation of medical services in Kerala.

In the context of immunisation, it is important to note is that there has been an important shift in policy since 1985 when the Universal Imnmunisation Progra- mme(UIP) was adopted with the aim of targeting childhood diseases that were vaccine preventable. Instead of thinking of immunisation as a strategy to protect populations at risk from epidemics, the childhood immunisation programmes ought to make inmmunisation a routine practice for prevention of vaccine preventable diseases, viz, childhood tuberculosis, diphtheria, whooping cough, tetanus and polio in the first instance, and then measles, which was added in the immunisation schedule in 1985. What are the implications of this shift, which has brought global institutions such as the WHO and the UNICEF for the first time as major part- ners in health planning and policy in India? How far has the emphasis on targeting specific diseases been successful in secur- ing better health for children?

From the perspective of understanding the shift that has taken place in the role of global institutions in public health management in developing countries, the most important event in recent years has been the eradication of smallpox from the world in 1976. A scholarly history of this event from the social science perspective still awaits to be written - the most au- thoritative histories have been produced by participants in this programme and hence focus much more on its success rather than the difficult questions of sovereignty, informed consent and citizen rights. Some recent work does suggest that in their efforts to concentrate on aggressive immunisation rather than public health education, there was a manufacture of global consent in which issues of national priorities were sidestepped. It is not our intention here to go into these points in any detail [but see Greenough 1995; Naraindas forthcoming]. We are interested in seeing how the success of the smallpox eradication programme paved the way for bringing global institutions as important players in the public health management in India. Al- though there is a clear realisation among epidemiologists and microbiologists that very few infectious diseases can be targeted for eradication on the model of smallpox (polio is the immediate candidate followed by measles and perhaps hepatitis B) - the success story of smallpox eradication has fired the imagination of health plan- ners. They feel that more tangible results can be obtained by technocratic solutions

through which particular diseases are targeted for eradication rather than programmes for health education which seek to alter behaviour. As an aside, we may note that the dismal failure of another programme, viz, the malaria eradication programme is hardly ever part of the story of understanding the role of global programming in health management.

Although child immunisation programmes were part of the public health scenario in independent India, only limited progress was made in this endeavour until the mid- eighties because of formidable problems in delivery, and especially in cold chain management. In any case, comprehensive coverage was not considered a serious policy option in India. It was only in 1985 that the UIP was adopted in India, both because of the push given in this direction by UNICEF and later by the establishment of the Immunisation Mission under the Rajiv Gandhi government. The adoption of the UIP can be interpreted as a part of the process of globalisation in communication and commerce. It signalled a greater concern with child health on the part of international bodies like UNICEF and WHO. It also constituted a strategic shift in methods of resource mobilisation for international organisations, since high coverage achieved under immunisation programmes could be presented as a tangible success story and could convince international donors that money was being effectively utilised. It has been claimed by UNICEF and WHO that the target of immunising 80 per cent of the children of the world has been achieved. The major task now, they contend, is to cover the remaining 20 per cent of children. Despite some reservations about the quality of the data, most public health officials now assume that there has been a significant reduction in child mortality that is attrib- uted to the success of immunisation programmes. We briefly review our major findings in this respect.

The macro picture on childhood immunisation in India suggests that though overall coverage has improved dramati- cally, the results have not been uniform across the different states in India and also across all years. States with betterresources, higher growth in income, and better govern- ance have generally performed better. Female literacy seems to be a contributory factor in states reporting higher coverage though the relationship between female literacy and demand for immunisation is complex, as suggested by the micro studies

626 Economic and Political Weekly February 19-26, 2000

presented in this collection. Thus the aggregate picture masks the reality of wide gaps in performance of different states in the immunisation programme.

Das and Dasgupta have collated the data on immunisation coverage for the major Indian states from existing reports in their paper. They have also estimated and projected the net infant population from independent sources in order to review the success of the strategy of achieving the targets set by international organisations and ministries of health. It would be obvious that targets for immunisation can only be fixed realistically on the basis of data on the number of children in the populations that are being served. At present these targets are set by taking the birth rate of a state over a period of time and then translating it into estimates of net infants to be covered. These targets are obviously subjected to some error due to intra-year births. Further, the coverage figures tend to be upwardly biased by the nature of record keeping and the incentive structure which rewards local officials for achieving high coverage but punishes them for reporting on the difficulties of achieving the set targets. Therefore, the quantitative estimates are subject to inestimable error margins. Nevertheless, reduction in the disease burden from vaccine preventable diseases over time suggests that the picture of high coverage is correct but only in broad qualitative terms. Using descriptive statistical models to compare the performance of immunisation in different states of India, Das and Dasgupta in their paper in this collection, conclude that although aggregate figures of immunisation coverage showed more than 85 per cent achieve- ment of targets, there were significant variations in the performance of different states. By carrying out demographic projections for estimating target population for immunisation in the year 2006, they predict that the total number of children will steadily go up in all the states. This means that in the underachieving states, viz, Uttar Pradesh, Rajasthan, Madhya Pradesh, Bihar and Orissa, the number of children without access to immunisation is likely to increase if the present trends continue. This is because in addition to new cohorts of children there would be an increasing population of children in the older cohorts, who would not have been vaccinated, seriously jeopardising any herd immunity in the population. Given this scenario, it is likely that local level epidemics against vaccine preventable

diseases will continue in these underachieving states.

Records as Political Documents

As mentioned earlier, the emphasis on disease eradication and universal coverage of children was part of a new strategy of resource mobilisation within the international organisations. We suggest that this has influenced the nature of record keeping, though initially the connection seems remote. Our studies, both at the macro and micro level show that the recording system in relation to vaccine coverage is geared towards counting the number of doses of various antigens distributed and not the number of children immunised. That is to say, coverage is calculated on the basis of doses that local level health workers report they have administered to the estimated number of children in the population they were supposed to cover. Now it has been assumed in most international and national reports that these figures are interchange- able - i e, if x number of doses of antigens have been administered then x number of children have been immunised. . Hence claims have been made that 80 per cent of the world's children have been immunised and that our task now is to reach the remaining 20 per cent. This is seriously misleading in the case of India and perhaps other countries. On the basis of our analysis of the primary data collected by NFHS, as well as the micro studies reported in this collection, we find that the number of partially immunised children (i e, match- ing age of the child with the number of doses he or she had received) was significant in the population. The aggregate figures in National and International Report- ing Systems are at present not geared towards capturing this fact. The conclu- sion arrived at the macro level was sup- ported by our findings at the micro level since we found that even districts reporting high level of coverage in Gujarat and Kerala, contained significant number of partially immunised children. Thus, a pool of non-immunised or partially immunised children continue to exist, who are easy prey to local epidemics of vaccine preventable diseases. Hence, we have to conclude that though the overall incidence of these diseases has come down, there are likely to be local incidences of epidemics for years to come. It is interesting to see that though local level health workers are often blamed for fudging records, the protocols devised by international organisations and

their national counterparts have not come under serious scrutiny. It is part of the politics of numbers that only certain kinds of information is foregrounded in discussions of the success or failure of immunisation programmes. Yet, it is clear that the protocols of reporting immunisation coverage need to be changed in the direction of child centred records and the story of success of immunisation programmes would have to be modified when such records begin to be available.

It is not our intention to suggest that there are no serious problems in the management of records at local levels. First, the system of disease surveillance at present is seriously deficient. In the course of the micro studies we found that local level health workers are not adequately trained to recognise vaccine preventable diseases. Further, records of the occurrence of vaccine preventable diseases are not maintained. With the exception of polio on which surveillance has been stepped up since it is targeted for eradication by the year 2000, there is no awareness among health workers even in the states with better primary health facilities such as Kerala and Gujarat, that it is important to record incidence of vaccine preventable diseases. Given this scenario it is difficult to monitor and measure the exact impact of immunisation programmes on the reduction of disease load. Thus, while it is probable that childhood immunisation programmes have led to a significant reduction in child mortality, it is difficult to measure this in the absence of statistics on prevalence of vaccine preventable diseases.

Another significant aspect of the record keeping is that till recently, local level health workers were not encouraged to report adverse reactions to vaccines. It was felt by many functionaries in the international and health bureaucracies that an emphasis on adverse reactions could cause panic and lead to resistance on the part of users to vaccines. This has meant that important inequalities have been introduced in the system of health administration. Parents whose children suffer from adverse reactions to vaccines in the develop- ed world have various legal rights to compensation. Such rights are not only denied to parents in the developing countries but even the figures on adverse reactions are not available. Add to this the fact that in our experience, ANMs could not identify and recognise vaccine preventable diseases. The occurrence of a local level epidemic of any vaccine pre-


ventable disease led to blame being at- tached to either the health workers or the communities within which this had occurred [see the papers by Coutinho, Bisht and Raje, and Coutinho and Bannerjea in this collection]. Hence, it is not a surprise to see that local health workers tried to suppress information on this and it was the media, which played a proactive role in bringing local epidemics to light.

On the cost side of the immunisation programme, we have looked at data on materials and production. Unfortunately, it is not possible to breakdown the man- power and administrative costs itemwise. Although financial grants are given by the international organisations, the major part of the expenditure on immunisation in India is financed by the central government. The production capacity for existing vaccines is likely to meet the projected demand for vaccination in coming years although efforts will have to be made to ensure continued quality control. There- fore, both from the point of view of resource cost and production we do not envisage any problems of sustainability comparable to that being faced by many African countries in which there has been a withdrawal of international aid through which the immunisation programmes were primarily funded. Finally, it is best to recognise that immunisation programmes, by themselves, cannot reduce neo-natal mortality due to such causes as low birth weight, or poor management of childbirth. In India 40 per cent of infant mortality occurs in the first 28 days of the birth of the child. Clearly programmes to integrate child and maternal health are imperative to reduce this incidence to acceptable levels.

The Logic of the Local: Micro Level Community Studies

How do policies and programmes that have been formulated at the global and national level impact upon the local patterns of health delivery? How do we account for the way in which patterns of relation- ships at the level of community and family influence the outcomes of these policies and programmes? In order to answer some of these questions we designed a series of community studies to capture the Varia- tions in immunisation coverage and the quality of care. Initially the study was designed as a comparison between the two districts ofPauri Garhwal in Uttar Pradesh, and Surat in Gujarat, representing districts with low and high coverage respectively.

However, following the first phase of fieldwork, it was felt necessary to include two more districts in order to further problematise and verify some of the initial findings. It was also felt that Pauri Garhwal being a hill district posed certain topo- graphic specificities. In this context we decided to take up another district within the same state, viz, Kanpur Dehat, which also had a low reported coverage. Simi- larly, in order to better understand the phenomenon of high coverage in a different socio-cultural setting we chose Trivandrum district of Kerala. The selec- tion of all field sites was also influenced by the availability of competent research- ers who were fluent speak the local lan- guages, as this was not intended to be a survey-based study, but essentially an intensive anthropological study.

The emphasis in the micro level studies was to understand the manner in which immunisation programmes are implemented at the local level by the health workers and the supervisory staff. These studies also addressed the issues of the family and community level factors that promote or inhibit acceptance of immunisation programmes. The ANM obviously plays a crucial role in the implementation of immunisation programmes but is also responsible for implementation of other programmes such as the family planning programme. How do these re- sponsibilities translate at the local level? First of all, as global and national priorities in health alter, changes are communicated as commands from above. Through an accumulation of such programmes over the years the ANM is currently expected to motivate mothers to accept contracep- tion, to encourage them to come for pre- natal check ups in the primary health centre, to conduct safe deliveries and to motivate mothers to bring their infants for immunisation. Now all this requires prolonged contact with the community and the responsibility towards one programme can interfere with the responsibility to- ward another. For instance, in some cases women who had become pregnant soon after the birth of one child were hesitant to take the child for immunisation because they felt that they would be 'scolded' by the ANM for failing to adopt contracep- tion. Similarly, full immunisation of children requires contact with the PHC on the part of the mother at least five times during the first year of the child's life. Thus, ANMs have to ensure that after every dose the mother had the incentive to bring back

the child. Some ANMs told us that they sometimes felt compelled to reduce the dosage of the antigens because in local understandings, which they often shared, a more 'potent' dose was likely to cause fever and make the child irritable. Thus, in order to ensure that the mother did bring the child back for the next dose they felt it was preferable to give a reduced dosage. Yet, they understood perfectly well that this reduced dosage was contrary to what they had learnt in training sessions for correct immunisation. In our understanding, then, the ANM has to mediate between the norms of biomedicine and the norms of the community. Because the system of reporting is a hierarchical one, she has every incentive to suppress information about the community inspired dose schedule that she actually implements, as also on the occurrences of VPDs in the communities under her supervision.

Let us now consider the community and family level factors, which have an impact on social demand for immunisation. In the literature on adoption of new technology, such as that of immunisation, it is common to conceive of the community as either agents who demand this technology or who are hesitant to adopt it because of social resistance generated by incorrect beliefs about the technology. This di- chotomy of social demand and resistance does not provide us with adequate tools to understand the relation between social attitudes and technology adoption. Our studies show that it would be incorrect to assume that regions with high coverage are characterised by a demand for vaccines - conversely, we did not find any active resistance to vaccination in regions with low coverage. Rather, we prefer to de- scribe high or low coverage as a result of a complex configuration of factors that include characteristics of the health delivery system as well as certain features of the communities in which vaccination is being delivered. The major factors, which influence the high or low coverage in immunisation, are described below.

First, since the public health system is organised on a territorial model that as- sumes homogeneity of space, it is unable to take care of factors related to local ecology and terrain. Our studies show that both physical and social features of the environment determine accessibility to the health system. Physical features of the environment, which affect accessibility are primarily a terrain that is difficult to traverse for mothers because of forests, flooded


rivers, or sheer physical distance of the house from the place where immunisation sessions are held. Social features, which affect accessibility, are social isolation of certain sections or hamlets within the village because of the operation of hierarchy in caste as well as within tribal communities. Further, the taboos on women to appear in public places during pregnancy coupled with demands on female labour both within and outside the household make it difficult for the mother to take the child for immunisation. This was most evident in labour scarce economies such as that of Garhwal or within nuclear households in which young mothers did not have the support of older women for household work or child care. Isolation of certain segments of the population because of social stigma including stigma of disease, or the perception of the public places as dangerous because of high incidence of crime, made it difficult for mothers to access the health services and also created impediments for the free movement of ANMs in these areas. The withdrawal of several kinds of services from regions that are marked by political insurgencies or civil war inevitably affects performance of the immunisation programme. We found that even short-term disturbances caused by frequent public rallies or strikes led to disruption of immunisation services. It is to be noted that physical and social inac- cessibility of a region or a cluster of households defines both the access that ANMs have to these groups as well as the access that mothers have to these health facilities.

The relation between female literacy and reduction of infant mortality has received much attention in the social science and public health literature. But the exact mechanisms through which literacy functions to promote better health for children are still obscure. Our studies show that it is not literacy at the household level that affects demand for vaccination. Indeed our data do not show a critical difference in households with literate or non-literate mothers in terms of impact on immunisation. However, there is a sharp difference in demand for and acceptance of vaccination between communities which have a thin layer of educated women versus those which may have literate women, but not educated ones in the community [see Final Report of the Social Science and Immunisation Country Study-India: 1998]. Our understanding is that a critical number of women in the community makes a sharp

difference in the capacity of the community, especially women, to take advantage of services offered to them by the state and make the local level health workers more responsive to the demands put on them. This tfight also be restated as the importance of building social capital in the community for effective utilisation the social services offered by the state. How- ever, since these observations are made on the basis of case studies, they need to be tested on a larger sample of the population taking characteristics of communities rather than households as significant variables in delineating the relation between female literacy, female education and performance of immunisation and other public health programmes.

The importance of building the community's capabilities to access the health system is also highlighted by our finding that the presence of a cadre of village workers such as the anganwadi workers who could stand between the women in rural areas and the health system, greatly facilitated the community's access to health services, including immunisation. Anganwadi workers were found to play an active role in announcing immunisation schedules, gathering mothers with infants and offering help in taking the children to the immunisation sessions in both Gujarat and Kerala. Thus, where the anganwadi scheme had been success- fully implemented it had become a major resource for mothers to access the health system for both the needs of their children and for their own needs.

On the basis of the micro studies on childhood immunisation, we can see that though conceived as a technocratic solution towards reducing morbidity burden of children, especially in developing countries, this scheme has been successful only in conjunction with other changes that have taken place in the transformation of rural communities. These changes include increase in female education, building up the capabilities of local level health workers as well as removal of supply side constraints in the public health system. The very fact that immunisation schedules require an ongoing contact between mothers and local level health workers means that the programme cannot be implemented as a purely technocratic solution to the problem of child health.

On the basis of the macro and micro studies conducted by us we have seen that although the overall burden of vaccine preventable diseases in India has gone

down, there are significant regional and local variations in the immunisation coverage of children. Thus, threats of local epidemics continue. Is the public health system in India prepared to deal with such a health scenario? As it happened, the period in which we, conducting fieldwork, saw a number of public health crises. Significant among these were the emergence of a new strain of cholera (Vibrio cholorae 0139) in various parts of India in 1993, an outbreak of dengue epidemic in Delhi in 1996 and reports of deaths from adverse reactions to oral polio vaccine in parts of West Bengal which seemed to put the immunisation programme there in some jeopardy. These were obviously not the only public health crises - the re-emergence of resistant strains of tuberculosis, as well as significant increase in incidence of HIV transmission. threaten to become major health issues in the years to come.2 Our case studies, though limited, help us to understand the relation between state and citizenship in the management of perceived public health crises.

Crisis, Epidemics and Health Management

As we have seen, there are significant lapses in the implementation of the government programmes geared towards child and maternal health in several states in India - these rarely receive sustained attention in the media. They are not seen to have the potential to put the legitimacy of the government in question. In the public culture of India, it is epidemics that become occasions for the exercise of citizen rights in the field of health. The situation is somewhat similar to the fact that famines and starvation deaths receive far more attention in the media than does chronic hunger. It appears that a crisis in the form of an epidemic is seen to be most dangerous for the legitimacy of the state. In the cases of cholera outbreaks in 1993 and 1994, as well as the outbreak of dengue in 1996, the government first tried to manage this crisis by denial. For instance, in the case of the epidemic in West Bengal caused by a new strain of cholera (0139) which emerged in 1993 and replaced the classic cholera causing strain (01), the health bureaucrats refused to name the disease as cholera till almost the end of the epidemic. In explaining this denial during the course of interviews, the state level bureaucrats made the claim that naming the disease might have led to panic


among illiterate populations. They argued that epidemics, even if local in character, receive a lot of publicity in the international media. At least in one case, that of the plague epidemic in parts of northern and western India the public health crisis led to a decline in tourism, fall in stock prices, and a number of court cases. However, the bureaucrats consistently failed to recognise that panic may be equally caused by rumours which flourish in a political culture of secrecy and denial, leading to such reactions on the part of families as hoarding of medicines, self prescription, and in some cases to costly litigation. In the cases described in this volume, it was only through the persistent role of the media and sometimes the mediation of courts of law that the crisis was acknowledged. This led to serious delays in effective management of the epidemics.

There are some interesting features of urban India, which come to light in our study. Though one cannot say that there is a greater awareness of the right to health among urban populations across the spec- trum of disease, citizens have begun to use existing institutional mechanisms such as the media and the courts of law to press for their demands for effective management of the crisis. For example, the dengue epidemic in Delhi resulted in a high court case against the state government for its alleged negligence and led to highly dra- matic and visible action on the part of the government. However, it appears that while public attention focuses on serious lapses in sanitation and organisation of health care during a period of crisis, there is no sustained demand for these collective goods during periods of normalcy.

As far as the reaction of the state is concerned, we found that public health officials and political parties in power tended to respond to a health crisis by mapping out a geography of blame. Thus attention was focused on the health practices of the community rather than on the deficiencies of the public health system. For example, slum dwellers were blamed for their habits to account for the emergence of epidemic cholera despite the fact that clean drinking water is not supplied to them (see paper by Ishita Ghosh). Simi- larly, when a number of deaths occurred in a Muslim-dominated area following the administration of measles vaccine in one case and polio drops in another, the community was blamed for being superstitious [Coutinho and Bannerjea in this collec-

tion]. Emphasis is placed on their religion or ethnicity rather than their poverty or lack of education. In one case the official explanation for the death of a child that occurred within 24 hours of having been administered the polio drops, was that the child was suffering from acute diarrhoea and hence her death had no connection to the pulse polio campaign. Our point is not that assumptions about contamination of vaccines in these cases were correct, but that to blame the community in the face of this tragedy showed that in the zeal of administering vaccines to achieve the targets assigned to them, health workers had shown themselves to be blind to the immediate threat of disease and death that the child was facing. Instead of referring the child immediately to a hospital they had simply administered the polio drops and allowed the family to take her home.

Before we move on to issues pertaining to vaccine research, we would like to point out some aspects of health care which have important implications for the infectious disease scenario in the coming years. In an important study of the health practices in developing countries Van der Geest (1988) pointed out the co-existence of a formal and informal medicine distribution and health care. What this means is that not only are there a wide range of medical practitioners owing allegiance to the different medical systems, but also that biomedical products, such as injections and drugs, are freely prescribed by various kinds of practitioners. In the absence of effective regulation to control the use of drugs, we found widespread use of injections and antibiotics prescribed by not only untrained medical practitioners but also by those who had training in cosmopolitan medicine. In most cases the use of prescription drugs was haphazard. In a systematic study of the manner in which drugs are prescribed in a village in Garhwal, Das and Das (1999)3 conclude that this pattern of misuse has important consequences:

The free availability of drugs and the lack of legally enforceable restrictions on who can buy them or prescribe them compound the misuse of drugs in two specific ways. First, treatment is often limited by how many pills the patient can afford; hence the full course of treatment needed to elimi- nate the pathogen responsible for a particular disease is seldom completed. Sec- ond, cheaper, less effective drugs are often used to treat infections... this pattern of misuse has two main consequences: in the short term, the disease is not cured, effectively leading to increased morbidity, and

sometimes mortality. In the long term, and on a population level, antibiotic misuse leads to emergence of resistant strains of bacteria that will be increasingly harder to treat in the future [Das and Das 1999]. In almost all illness episodes that we

have collected we have found that patients and their families follow a pattern of resort in which patients are likely to take medications prescribed by practitioners in the informal sector. This can lead to worsen- ing of the illness but even if the pills prescribed are harmless such as tonics, patients and their families have to spend large amounts of money relative to their incomes on such placebos.4 This suggests how inaccessible competent medical care is even in urban India. Infectious diseases are not produced by biological pathogens alone but also by political, social, cultural, and economic pathogens. For all of these reasons it appears to us that public health priorities will have to shift from eradication of particular diseases to issues of health education for both patients and doctors: otherwise it is likely that as some diseases are eradicated, new diseases as well as resistant strains will appear to wipe out the health benefits to the population.

Experimental Dimension

An important characteristic of biomedicine is the combination of the therapeutic and the experimental: the vision of con- tinuous progress in the eradication or elimination of disease could not be sustained without consistent endeavours to develop new products such as drugs and vaccines. Although vaccine research in the 19th century was geared towards both therapeutic and prophylactic vaccines, the discovery of antibiotics shifted the emphasis away from therapeutic vaccines. In common understanding today vaccines are associated with prevention rather than cure. It is important to mark the fact that the existing paradigms on vaccine research may alter radically in the near future. First, some attempts towards the development of therapeutic vaccines, especially against diseases relating to the immune system are under way. Second, a shift of emphasis has taken place in the western societies from populations to individuals as the configured users. In that context immunisation appears as a life long practice in which individuals need to consider carefully the risks to which they may be exposed and take vaccines accordingly. It is unlikely that such a shift of emphasis will take place


in poor countries because there is an opposite push from international organisations as well as pharmaceutical compa- nies who argue that investment in vaccine research can be sustained only if there is a commitment on the part of governments to include new vaccines in immunisation schedules for whole populations. Finally, many new innovations are primarily addressed to delivery level problems. For example, the shift towards oral vaccines, or needles which bend after a single use and therefore cannot be recirculated, are especially geared to deal with misuse of injections in poor countries of Asia and Africa. For all these reasons, the processes of experimentation in vaccine research offer an important window for understanding how transnational flows shape (or hinder) scientific research in India.

Our research on vaccine development in India focused on understanding the net- works that move a vaccine from the 'bench' to the 'bush' and from the laboratory to the market. We examined the processes underlying the development of an anti- leprosy vaccine (the Mw anti-leprosy vaccine) and a fertility regulating vaccine (the hCG vaccine), both of which were re- searched at the National Institute of Im- munology, Delhi. In addition, the history of the development of vaccines against cholera, the development of a new recom- binant oral bivalent vaccine against cholera, and a trial for the introduction of hepatitis B vaccine as part of the immunisation schedule in Delhi were studied. We offer the following observations on the basis of these studies.

It is interesting to observe that in all the cases of vaccine development we found that scientific controversies play a very important and even productive role. These controversies, we suggest, should be seen not as aberrations but events that stand between normal science and paradigm shifts. They range from issues pertaining to interpretation of results, scientific ju- risdiction, ethics, as well as efficient use of resources. We found that in almost all cases, controversies did not get resolved only by setting up further experiments - they were temporarily abandoned, resumed and sometimes resolved as a result of mediation by the state and global institutions. For instance, criticisms by women's health groups and doubts that were raised about the return of fertility among experimental subjects of trials on fertility regulating vaccines, led to a temporary halt on these vaccines and a return to the drawing

board. However, we also found that the

politics of global institutions, competition over candidate vaccines, and rumours generated about a particular vaccine could lead to a scuttling of promising lines of research, especially in developing countries.

Unlike the processes of research in the physical sciences in which the invention of objects in the laboratory can be ideally separated from considerations of how these may be used in the outside world, biomedical research has to necessarily include experimentation on human subjects as part of the research process itself. This is why the politics and ethics of research are built into the research design in com-

plex ways. Thus a crucial aspect of vaccine technology development is the relation between the therapeutic and the experimental. For research to move at the experimental level it has to negotiate the therapeutic level, and conversely good therapy is seen as that which incorporates new findings. Thus the concern for the patients' well being can lead to modifications of the experimental design. A good example of this is the introduction of Mw anti leprosy vaccine as an adjunct to the multi-drug therapy. In this case the research design would have been more robust if the effi- cacy of the vaccine were to be tested on populations which were not taking any other medications. But clearly after the success of multi drug therapy had been demonstrated as a result of a series of fortuitous circumstances, it would have been unethical to deny the patient population this therapy in the interest of a more robust research design. Similar examples may be found in the administering of trail drugs when strictly experimental considerations have to modified for therapeutic reasons even when the trial is on.

The experimental design of a trial is important because in the case of most vaccines which are prophylactic in nature, populations which are currently healthy are administered the vaccine to counter future risks. Double blind trials currently provide the gold standard in vaccine research. The emphasis rightly is on the need for objective assessment. Trust created through numbers plays an important role here for the movement of a vaccine from a laboratory to the market. Many of the considerations around the ethics of vaccine research subjects arose because of the justifiable fear that human subjects may be used as guinea pigs in scientific experiments. The experience of Nazi medicine in which human subjects were exposed to

cruel experiments haunts the discussions on ethics in biomedical research. How- ever, as the recent AIDS activism in the United States has shown, a community may also treat the trial as a resource. Thus it is not only scientists but also the community which may have a stake in trials. The problem is that members of a community may not have the same understanding of the risks involved, as the scientific community does. In the case of trials of the anti leprosy vaccine we found that because of the prolonged period of contact between the biomedical personnel who were conducting follow up studies in Kanpur Dehat, the villagers began to treat the trial as a resource for all kinds of medical needs. Text book formulation of ethics do not deal with the ground level issues that arise when doctors are faced with the demands made on them in the face of illness and dismally poor quality of general health delivery in the villages. The issue of scientific knowledge and demo- cratic aspirations over biomedicine raises vexed issues not only about the regulation of expert knowledge but also how bio- ethics functions on the ground.

Our studies on trials of the anti-fertility and anti-leprosy vaccines emphasise the need for user perspectives to be built into the process of technology development. Success of mass immunisation programmes in developing countries, have led policy- makers into imagining all vaccines on this model. There are, however, important differences in the way in which the user needs to be configured in these cases. For example, the anti-cholera vaccine may be useful only in populations where cholera is endemic and where there is a lack of adequate sanitation, including provision of clean water supply. In contrast, a fertility regulating vaccine is a product that could be used by any woman. Further, in this case vaccines provide one kind of contraceptive method among others. This is why it is important to figure out whether the vaccine is being imagined as offering a greater range of choices to individual women or as a method of population control, especially geared towards poor women whose overall familial conditions may not allow the privacy necessary for using other kinds of contraceptives. Simi- larly, in the case of anti-leprosy vaccines that are recommended as adjuncts to multi drug therapy, the use by patients raises a different set of issues than their use as prophylactics for relatives or close con- tacts. Debates about the success or failure


of a new development in vaccine research have to take this user configuration into account. Yet we found that scientific discussions rarely paid attention to this aspect of technological innovation.

While there is a general consensus that subjects in vaccine trails must be recruited only on the basis of informed consent, at the heart of this issue is the problem of finding effective ways of translating biomedical views of risk to the communities of users. Methods that have been used to communicate the notions of risk to the non-literate populations have experimented with various communication techniques, for example the use of videos. In some countries potential subjects are given an examination to assess their understanding of risk. We agree that informed consent is a very important goal, but it still remains an illusive end. In India, interactions between doctors and patients are based on trust. This does not mean that doctors are always trustworthy. In fact, in many cases of malpractice patients have no legal resort. But it does mean that in a medical culture in which bureaucratic practice is not embedded in everyday life, consent is seen in the day-to-day moral interactions rather than as a legal category.

Thus, even when necessary documents have been signed by a subject giving informed consent, it is not easy to conclude that notions of risk have been adequately communicated. Informed consent in such cases becomes a kind of documentary practice for claiming legitimacy for the scientists. We should add though that this is not only a problem in India but now engages the attention of many medical anthropologists in the west who are strug- gling to understand the consequences of conducting medicine constantly under the shadow of law. In some cases advocacy groups have emerged to represent actual users. We found, though, that in the femi- nist critique of fertility regulating vaccines, for instance, little attempts were made to find what the actual users considered important. There was an assump- tion that a single category of women can be configured to represent diverse expe- riences in this field.

Our research in this field of immunisation shows that serious collaborative studies on vaccine development are necessary in order to understand the organisational and other constraints on innovation in this field. Despite the fact that Indian scientists took a lead in the seventies in many areas of this research, only one vaccine (Mw anti-

leprosy vaccine) has moved from the laboratory to the market. Even when Indian scientists have shown remarkable ability - they were the first (along with scientists working in ICCDR in Bangladesh) to identify the new strain of cholera - the research is mired in bureaucratic delays and lack of co-ordination. We fear that in an era when new norms of bio-sociality are emerging and global institutions are taking a lead in defining priorities in research and institutional reforms, the weak- ness of institutional structures of research in India may seriously distort health planning. Our own efforts in addres- sing these questions have been motivated by a concern to show the complex character of public health issues in the area of immunisation. i3

* These three essays, 'Care, Welfare and Treason: The Advent of Vaccination in the 19th Century' by Harish Naraindas; 'The Productivity of Crises: Disease and Scientific Knowledge and the State in India' by Kavita Misra; and Controlling aCunning Disease: Cholera Vaccine in Bengal' by Abhijit Dasgupta are part of this collection of papers and will be published subsequently.

Notes

I All the papers in this collection were produced as part of the Social Science and Immunisation Project, carried out under the aegis of the Centre for Development Economics, Delhi School of Economics. Veena Das and R K Das were the principal investigators of this project. This project was part of a larger transnational study carried out in six other countries. We are grateful to the governments of Denmark and the Netherlands for supporting this project. Thanks to Pieter Streefland (Royal Tropical Institute, Amsterdam) who supervised this project, and to Paul Greenough (University of Iowa), and Anita Hardon (University of

Amsterdam), whose critical comments and suggestions on earlier versions of these papers have been helpful. All the papers in this volume have earlier appeared as working papers of Social Science and Immunisation Series of the Centre for Development Economics. The series comprised of 20 working papers as well as a two volume final report of the Project. A limited number of copies of the other papers and reports are available on request.

2 Since AIDS and tuberculosis are both chronic infectious diseases, these need to be studied through different methodologies. Lester Coutinho is currently engaged in the government and non-government responses to the increased rates of HIV transmission.

3 See Das, Jishnu and Das Saumya, 'Health Care in a Developing Country: Learning and Complexity', 1999, Mimeo.

4 The exception is the case of cholera in the slum areas in Calcutta where prolonged experience with the disease leads to the knowledge in which people immediately go to the infectious diseases hospital although they also try to get out of it as soon as possible.

References

Arnold, D (1993): Colonising the Body: State Medicine and Epidemic Disease in the Nineteenth Century India, Oxford University Press. Delhi.

Greenough, Paul (1995): 'Intimidation, Coercion and Resistance in the Final Stages of the South Asian Smallpox Eradication Campaign', 1973-75, Social Science andMedicine, Vol 41, No 5: 633-645.

Social Science and Immunisation Project (1998): Final Report of the Social Science and Immunisation Project - Country Study India, Centre for Development Economics, Delhi School of Economics, Delhi (mimeo).

Van der Geest S (1988): 'The Articulation of Formal and Informal Medicine Distribution in South Cameroon' in S Van der Geest and S R Whyte (eds) The Context of Medicines in Developing Countries: Studies in Pharmaceutical Anthropology, Kluwer, Dordrecht.

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