Version classiqueVersion mobile

Aids and maternity in India

 | 
Patrice Cohen
, 
Suniti Solomon

Part 1. HIV/AIDS epidemic in India

4. Management of HIV/AIDS Epidemic in India: Geo-anthropological and Political Comparison with Brazil

Frédéric Bourdier

Texte intégral

Introduction

1For the last two decades in Brazil and for the last fifteen years in India, the HIV/AIDS epidemic has challenged the entire society, as well as the whole health system. In that respect, and from a social science perspective, AIDS is seen to be especially revealing as well as causing an acceleration of social change.

2AIDS reveals what is usually hidden in society, what is not supposed to be put forward in the culture. Because it mainly concerns sexual behaviour, social scientists have to discover and deal with the endemic within the epidemic, the ordinary within the extraordinary and the structure within the margin. In a country like India, for instance, prevention and awareness campaigns are confronted with the taboo which prohibits speaking openly and frankly about sex. The cultural pretext is presented in its fallacious form: “The more you speak about sex, the more the people will be prone to practice sex”. Whatever the pertinence/irrelevance of such a statement, it has created a paradoxical situation of misinformation, after fifteen years of prevention, because most of the population does not have any clear answers as to how the virus can be contracted. Apart from that, AIDS also reveals the functioning of the health system, its dynamic, its internal and external organization, and the difficult relations between laypersons and health professionals in the context of the epidemic.

3The epidemic is simultaneously a process which accentuates social discrimination and socio-economic inequalities. Injustices are becoming more visible and intense, not only due to attitudes towards the persons living with HIV/AIDS, but because of the political tergiversations and inadequate reactions of government. In Brazil as well as in India, people die alone, not only because of the virus, but as a result of social and medical rejection, mistreatment and forced isolation, having no desire to struggle for their lives.

4In a few words, when anthropologists study AIDS, they are not considering the disease in itself. They are rather observing the way the societies behave and how the institutions react. The epidemic acts as a filter, as a gate of entry helping us to have a better dynamic understanding of how a society functions and changes in the time of AIDS. Even if the epidemic is far from being only a health problem, it receives attention from both health and development policy planners. While the governments deal with the epidemic, the social scientists point out the three major dimensions of any health system that have to be taken into account.

5First, a health system is a political system: it cannot be isolated from nationwide policies or from the whole decision-making process, especially in the countries of the South where the institutions are strongly bound to external pressures. International, national and local policies (and politics) constitute a complex network in which struggles for economic allocation, political hegemony and structural violence are interconnected. This is particularly the case of India and Brazil.

6Second, a health system is a socio-cultural system, a system that conveys social relationships and particular values. Health actors interact with the population and both sides develop their own strategies. The health system (along with its prevention and care performances) can be compared to a platform where cultural values, economic constraints and social dependencies are permanently negotiated between concerned people and health promoters. This is a dynamic process in which an equilibrium is hardly found, mainly because the objectives and the social logics which are being challenged are not easily concealed by the involved actors.

7Third, a health system depends on its geographical implementation. The spatial distribution of the services is fundamentally unequal (I will come back to this point later), not only between rural/urban areas but also from rural to rural areas and within the cities. The disparities have been strengthened in the time of AIDS, even if NGOs have to some extent filled the gap. However, this is not always the case and most of the NGOs have their local preferences and their social focus and do not contribute to a widespread homogeneous action in terms of public health. Due to the lack of spatial integration of the services, it becomes hazardous to generalize about a National AIDS Policy as a whole. In that respect, the global fallouts of the Brazilian and Indian AIDS programmes, and the criticism one may have about them, cannot be apprehended as a whole and deserve to be analyzed with qualified statements.

8This last point leads me to the main purpose of my paper. I wish to compare some of the social dynamics of AIDS in two immense countries badly affected by the epidemic. Comparative analysis is a difficult exercise, it implies being in a position to consider a minimum of common references, which may be hard to discover when the social systems and the levels of development are different. Consequently, I would propose a circular rather than a point-to-point comparison. First, because my perspectives of approach have been somewhat different during my research in India, from 1996 to 1998, and in Brazil, from 1999 to 2002, and I do not want to make an arbitrary distinction between what is right or wrong here and there. My purpose is to initiate a constructive analysis of what is happening within two contextual and historical situations.

9In spite of tremendous variations in its profile, it is fundamental to insist on the universality of the epidemic, even if the world scenario deals rather with a set of sub-epidemics, as is the case in India or in Brazil, and even if one should avoid speaking of a pandemic in the sense that HIV/AIDS diffusion is regressing or stagnating in certain regions or countries while it is still progressing in others. Finally, the word epidemic implies a homogeneousness in terms of diffusion, but not a uniformity. Contrary to what a few authors have suggested (cited by Hunt 1996), I refuse to formulate a classification based on “African AIDS”, “European AIDS”, “Asiatic AIDS” or “Latin American AIDS” that may give birth to biological and racist speculations, predetermined socio-cultural, geographical and economic-political accusations. It is worthwhile to suggest a range of complex social and regional configurations presenting resemblances and disparities that each government has to take into account.

10Of course, I elaborate an analysis with mutual perspectives on AIDS in India and Brazil because of my own experience and knowledge. It is also a relevant choice in view of their similarities and discrepancies. Discerning the facts and figures in another country definitely enables the scientist, the health planner and the activist to have a better understanding of how a society reacts with its own values in a time of health and social crisis by confronting variants and invariants as found here and there. Moreover, moving from one country to another helps to distinguish the part played by choice, arbitrariness and constraint as they occur in all national health policies. Ultimately, it facilitates our understanding of how health, social, political and economic factors emerge in a given direction under the threat of an epidemic like AIDS.

11After presenting the general social context that “shaped” the evolution and diffusion of the epidemic, I will deliberately lay emphasis on Brazil, especially its policy regarding drugs, insofar as I do not want to repeat what I have already written (specifically what is accessible in English: Bourdier, 1999, 2000, 2001) and, most of all, to avoid repetitions, observations and broad descriptions with which the reader may be familiar.

One Epidemic, Two Socio-cultural Backgrounds

12When the first cases of the disease were identified (1981 in Brazil and 1986 in India), the two countries did not have the same liabilities.

13On the one side, they shared a few common characteristics: the size of the countries (even if Brazil in two and half times bigger and has a population of “only” 160 million), the deliberated and the constrained migration that affected more and more people, a federal political system based on democracy, a planning policy with direct state intervention (in spite of a regular increase of the private sector, encouraged by external pressures), a tradition of networking the public health system, a strong link of dependency with international organizations (IMF, World Bank) creating economic, social and health drawbacks. They are also two countires in which access to health services remains poor, apart from local exceptions (Tamil Nadu, Kerala, the north-eastern states in India; the southern states in Brazil); they have both historically generated a socio-political system built on flagrant injustice, social inequality, structural violence, poverty and illiteracy.

14On the other side, they show distinctions that will have a particular impact on HIV/AIDS diffusion and policy implementation. The first distinction is the way the societies apprehend their own sexual behaviour and speak more or less comfortably about sex. Although Brazil is highly religious, even conservative, with a good amount of Christian population, sexual relations are accepted as a part of the social day-to-day reality and only a few will dare to argue that sex should be confined to marriage. It is true, especially in North Amazonia where I have conducted my investigations, that sexuality begins early, sometimes before or just after maturity, and that bearing a child without having a regular companion does not mean the adolescent girl will be outcast by the society and her family. In short, people do speak a lot about sex, they like to gossip about it, they value it belonging to the good things happening in life, not at all restricted to procreation. The main difference in India, even if paradoxically Hinduism was basically more open to eroticism than Christianity, is less sexuality in itself, than the capacity to adapt it to the moral values prevailing in the society. Of course, on a superficial basis, it is tempting to consider the way sexuality is filtered and condemned by specific prescribed rules. But I will argue that what is openly done and said in Brazil may reach the same intensity in India, but in a more hidden and secret manner. Discourse and appearance do not reveal the social reality and one has to go beyond them, through other strategies of observation.

15The second distinction is family organization. Roughly speaking, we are confronted with a “family alliance type” of society in South India and with a more “individual aggregation type” in Brazil. This does not mean that family links do not exist in Brazil, they are just more evanescent and marriage is absolutely not the centre of kinship, as it is in the context of alliance in South India. In Amazonia, marriage is nothing more than an option (it was a must a few decades ago and it is still a value in some restricted conventional milieux) and a family can be composed of various members (an aunt, a brother, a cousin with her son), each one of them being autonomous in terms of social and sexual relationships, but involved in a network of interdependence which nevertheless functions. The family dynamics are definitely divergent in India, but I would not suggest that they are absolutely opposite. The family in India has already been frequently depicted, sometimes in a more conventional way that it in fact is (Mitra, 1997). My research in Tamil Nadu, along with a few but significant studies in other parts of India (Kapur, 1994, Kapadia, 1996), has revealed that contrary to what is commonly said, the family is not always the sweet place where all members experience mutual self-recognition, where individuals are bound by solidarity and love. More again, the family can act as a social unit that ostracizes, discriminates against and even rejects some of its members (Usha, 1998). Structural violence and conflicts are not uncommon. The same arguments can be extended to the whole society, in each socio-economic class. If one wants to get a more objective picture of Indian culture, it is important to be aware of avoiding a normative perception, what it should be, rather than what it really is.

16The third distinction is the position the woman enjoys in the society. Schematically, it is easier for a woman in Brazil to negotiate her status, and consequently her sexual life, than in India. This does not mean that Brazilian women are roughly equal to men; they have to face a macho society in which their counterparts have the decision-making power and, to some extent, economic privilege. The difference is more in degree than in nature; in any case, discrimination in Brazil never reaches the stage and the intensity it does in India. During the last four decades, the social emancipation of women has grown quickly, without being confronted with a powerful cultural pattern. The major discrepancy between the two countries perhaps lies in the fact that one is a recently made country that is more open to social change (five centuries of Portuguese invasion and colonization), where most of the people - at least in the north – share black, Amerindian and white blood in their veins, while the other has passed through a quite rigid and deeply rooted social system for three thousand years, whatever variations may exist from the Himalayas in the north to Kanyakumari in the south.

17The fourth distinction, less easily categorized in a restricted definition, is the self-representation of both societies regarding moral values. The concepts supposed to be particular to Indian culture have long been known and consequently play a role in canalizing sexuality: chastity of the woman (karpu in Tamil), supremacy of the society over the individual, deification of the marriage, etc. However, an attentive and long-term observation undertaken in three cities in Tamil Nadu for two and half years shows another face of reality: marriage regulations are to a cetain extent perceived as constraints; reciprocal suspicions of men and women often give rise to family conflict and separation (either virtual or real); there are hidden but constant attempts by the new generations, and by women in general, to take control of their own destinies, and by some of them to emancipate themselves from society and family; there is a growing awareness of one’s own desires and aspirations in life being frustrated, leading to alternative, but not visible, behaviour. In Brazil, society and family controls over the individual - either man or woman - differ in degree and to some extent in nature. South-American cultures encourage the emergence of the individual, who is considered as a potential promoter of change of the whole society. On the other hand, this may be one of the reasons why solidarity links are deliquescent. And reaching the extreme, it leads to social anomie, a stage in which the individual loses most of his or her points of reference.

18I could have extended the list to other characteristics, but what is worth emphasizing is that the epidemic has not been confronted with similar socio-cultural backgrounds in India and in Brazil. An epidemic dealing with sex (I confine my investigation to this mode of transmission), and consequently with human relationships, falls into the dominant categories of a particular society, moves into these categories and then disturbs and threatens them. Once this point has been admitted, it is not surprising that the epidemic of HIV/AIDS has provoked opposed, asymmetric, uncomfortable and sometimes violent reactions, just because it has called into question the internal values and the common rules openly operating in a given society.

One Epidemic, Two Political and Popular Feedbacks

19Every society appropriates the HIV/AIDS epidemic through its own patterns. This implies that political and popular reactions to its diffusion cannot be traced only from an epidemiological point of view. Moreover, very few countries in the world have responded promptly to counteract the disease. Brazil is one of them, leaving aside unavoidable reactions of denial from some segments of the society and from a handful of health professionals who would be willing to stop the epidemic by making outcastes of the first contaminated people, mostly gays and drug users.

20The epidemic appeared in the early 1980s in Brazil, as in Europe and America. In India it was reported later, in 1986, and the responsible health authorities delayed the implementation of preventive programmes on a large scale. During the first five years, AIDS was perceived more as a law-and-order problem (Dube, 2000) than as a socio-medical question. It was stipulated that "dangerous people should be detected, forcibly tested for HIV, quarantined if found positive and thus prevented from infecting blameless people". Such a strong determination led to the criminalization of the contaminated and so-called high-risk behaviour persons, like the drug addicts in Manipur who were put in jail, the professional prostitutes who were confined in remand homes and the few HIV-positive individuals who declared their status and attempted to organize associations for support.

21There are good reasons to argue that such discriminating measures generated effects contrary to what was expected and unwillingly helped the virus to spread. Epidemiological implications of this “silent incubation” period existed to some extent in Brazil, with the difference that the civil society in the southern metropolitan cities, along with activist groups, reacted promptly and managed to pressure the government into initiating more rapid action. In this context, the movement took the form of social militancy including ethical and human rights, equal access to prevention and care (even if local activists did not organize their movement, as was done in the USA, by creating an extraordinary lobby that managed to develop a rapid and unconditional access to drug treatment). The government took it as a challenge, primarily because it was in a transitional political period in the 1980s; after twenty years of dictatorship, counteracting the epidemic with force and determination was a way for the new government to show to the citizens its capacity to implement a new democratic process through universal access to health care and prevention.

22This is not the place and there is no point in delineating in this paper the evolution and the changing trends of the two national AIDS policies that have been depicted elsewhere (Bourdier, 2001, Parker, 1997), but I will focus on a few fundamental features that have hardly been debated and that have strongly oriented actual policies.

23First, one cannot avoid underscoring the tyranny of certain international organizations (USAID, World Bank, IMF). From the early 1990s in Brazil, and from the mid-1990s in India, these organizations did their utmost to compel the countries to adopt imported strategies without taking into account, or only insufficiently, the local contexts. The funding agencies imposed their own model of development and health management and they have been able, mainly due to economic blackmail, to restrict the space of negotiation with the local governments. They claimed, and still claim, to know what is right or wrong and decided to participate in the implementation of the programmes that fit into their economic and political world hegemony. For instance in India, they were in favour of the development of sentinel surveillance centres and mass campaigns on the part of the government, and they were prone to stimulate awareness and information mainly through punctual projects by NGOs they would support. In fact, the initiatives of many NGOs were restricted to the directives they received from the donors, even if a few managed to acquire more autonomy and started independent projects. In that way, it was inconceivable for an NGO to propose an intervention for people living with HIV/AIDS before 1996-1997, merely because such institutions as USAID and Bretton Woods simply thought it was not the proper time. The incredible waste of money in a state like Tamil Nadu and the failure of many projects all over India (which were mainly on a short-term basis) can be largely correlated with such external pressure, which meant that socio-cultural realities of the epidemic were neglected.

24This does not mean national governments lack responsibility. They have economical and strategic interests in adhering to the international order (see the case of China, and to some extent India, as concerns the World Trade Organization today) and, consequently, to a certain ideology of how to cope with health matters. But conversely, they have been able at various stages to control and negotiate their own policies, such as the antiretroviral (ART) universal access programme in Brazil and the new diversified and flexible prevention and care programmes in India. Furthermore, both countries, aware of this unequal deal with financial backers, instigated their own investigations in various fields related to AIDS (medical, epidemiological, social, economic, etc.) to prove the necessity of adjusting their policy to their ethics and to their needs.

25It is in this context that Brazil struggled against the WHO and the World Bank by making clear that there is no point in making a difference between prevention and care, or rather, to separate two aspects of a similar problem. Brazil was the first of the countires in the South to prove that the promotion of the ART is also a part of prevention efforts, underscoring the medical fact that the chance of sexual transmission is connected with the level of the viral load contained in the sperm and in vaginal secretions. The higher the viral load, the greater are the possibilities of HIV transmission. As the ART reduces dramatically the viral load, the infected but treated person has less opportunity to contaminate the others.

26Another point is that Brazil, after a five-year period of hesitation followed by an alarming policy ( “declaring war on the virus”), established an undiscriminating policy in order to avoid social stigmatization and rejection. The concept of high-risk groups is no longer pertinent in Brazil, except among a handful of epidemiologists, while, on the contrary, it is still strongly in the minds of the people in India, either among officials or in the general population. Whatever its significance, the drawback of this concept is two-fold: as has been observed in India and in Brazil, it gave the false impression that the “normal” population was outside the scope of the epidemic and, second, many individuals supposed to belong to the so-called high-risk groups adopt an attitude of denial and refuse to receive special attention once they have the feeling they are being incriminated.

27Naturally, many goals deserve to be improved in Brazil in terms of solidarity with and support of AIDS sufferers. The arbitrary conception still exists among medical professionals and the general population that some HIV persons like haemophiliacs, children or pregnant women are innocent victims, while homosexuals, injecting drug users, transsexuals or bisexuals are responsible of their own contamination, and eventually for the infection of others. Children living with the virus are sometimes not allowed to mingle with the other children in primary schools, as has been observed in Macapá and Belém, two capital cities in the northern states (Amapá and Pará) of Amazonia, until the family along with lawyers reproach the responsibility of teachers and plead the cause successfully. But what I would like to point out is that Brazil has proved to the world that a country with a majority of poor and deprived citizens, afflicted by political corruption and nepotism, has been in a position to implement a sustainable prevention-cum-care and drug policy. There is not enough place here to detail the multiple and complex strategies adopted by the Brazilian government to reach its ambitious goals; I will restrict my presentation to the particular aspect of access to remedies by delineating the specificities and the on-going impacts of its drug policy.

The National AIDS Drug Policy: an Element of Controversy in India and a Must for the HIV/AIDS Struggle in Brazil

28First of all, let us remember that there is no Indian HIV/AIDS drug policy. Up to now, the government has been unwilling (I will not say, unable) to provide ART through the public health system to all the infected persons who need it, probably due to both external and internal pressures. This is not an isolated case; during international meetings, India, China and South Africa are strongly opposed to the Brazilian policy, which is providing free drugs to every patient in spite of its poor economy and precarious political regime. ART in India is restricted to the private sector and a few NGOs which implement it in big cities (like Suniti Solomon’s organization in Chennai, Tamil Nadu), where they have launched programmes, most of the time restricted to a special population: persons belonging to an association, a section of pregnant women, haemophiliacs, etc.

  • 1 Information given by Paulo R. Teixeira, coordinator of the National STD and AIDS programme.

29On the other hand, the Brazilian HIV/AIDS drug policy is based on the right of every citizen to receive a treatment if needed. It is written in the Constitutional Law of 1988 and the state has to fulfil its committment. If not, it can be accused of not doing so by the civil society and put on trail. Such a policy has been highly debated and criticized, particularly at the time of its implementation by the national authorities in the early 1990s1. The dearth of trained health professionals and the poor structure of the health services, the lack of laboratories capable of monitoring the infection and the patient’s capacity of adhering to treatment were intensely questioned. National and international experts and health professionals, managers of programmes of prevention and care of people living with HIV and AIDS, staff responsible for the budgetary and financial execution of public monies and international organizations argue amid reports of treatment assessment and cost-benefit studies and projections both favourable and contrary to the implementation of such a costly policy for the state. Here again, international pressure to try to prevent the national HIV/AIDS drug policy has been great.

30In spite of multiple controversies, the country made the drugs available. Very quickly, reality not only corroborated the Brazilian policy, but over and above this, the statements of its optimistic defenders were outdone by the remarkably positive results. The capacity of the government to provide services, implemented through a vertical and independent programme dependent on the Ministry of Health, is reflected by the significant improvement of the health status and in the control of the infection among people living with HIV/AIDS. To this more immediate consequence of the antiretroviral regimens recommended by the Brazilian Ministry of Health, one must add several social, economic and political benefits, both palpable and yet to be achieved, without precedent in the history of public health in the Latin America continent.

  • 2 For more details, see the government site which is regularly updated: www.aids.gov.br/

31Among the 169,5 million people living in Brazil at the beginning of the twenty-first century, 203 353 AIDS cases were reported between 1980 and December 2000 to the National STD and AIDS programme. About 151 300 are men, 52 000 are female and 7 000 are children. It is estimated that 600 000 Brazilians are infected by the virus. Since 1996, the incidence rate has stabilized at around fourteen cases per 100 000 population. The number of new cases reported in the last years was approximately 22 000 per year2.

32The policy for the care of the infected people includes the creation of the laboratory network for the quantification of viral load and CD4+ and CD8+ cell counts. Presently, nearly all the twenty-six states have at least their own structure. It has been calculated that within two years (1998-1999), 150 000 tests of viral load have been done and 235 000 for the CD4+ cell counts (corresponding to 16 million US dollars expenditure). The care policy also includes the organization of health care services, the functioning of whch is both independent of and dependent on the traditional public health structures, support for the organization of people living with HIV/AIDS and projects carried out by NGOs, and more importantly the creation of a programme for the free and universal access to antiretroviral drugs through a separate public health network.

  • 3 The use of ART is indicated for symptomatic HIV-infected persons, for non-symptomatic individuals w (...)

33The programme began in the early 1990s with the distribution of AZT capsules to the infected bed-ridden population, as well as to all the positive pregnant women. It expanded rapidly within a few years to include the entire contaminated population and it was consolidated in 1996 by a congressional bill that guarantees every patient the access, free of direct cost, to all medication (HAART) required for the treatment, including protease inhibitors, following treatment criteria and guidelines set forth by the Ministry of Health3. Every year a set of committees (ethic, medical, public health etc.) meet to review the recommendations and adjust them to the updated scientific knowledge and the availability of new drugs.

  • 4 Studies have shown the very significant economic benefit of such a policy. But one may wonder wheth (...)

34In the past seven years, the decision-makers have adopted the strategy of offering modalities of care that favour outpatient care, such as day hospitals, therapeutic home care and specialized care services. NGOs are also involved by creating houses where patients can stay when they do not need long-period hospitalization4.

35What are the impacts of ART? Presently, more than 90 000 individuals are receiving one of the twenty-five pharmaceutical combinations made out of twelve ART drugs (five inhibitors of transcriptase reverse analogue of nucleoside, four inhibitors of transcriptase reverse non-analogue of nucleoside and four inhibitors of protease). Among them, 95 % are adults and 5 % are children. When the inhibitors of protease were made universally available in 1997, the number of new patients showed the greatest increase (26 000 in the same year). Apart from the possible attraction to receiving a more adequate treatment, as was expressly stated in the media and through the Brazilian National AIDS Programme at that time, which may have generated more HIV testing (and subsequently more identified cases), the increase of AIDS patients depended as well on the the newly chosen criterion according to which a person was declared to effectively have AIDS by considering the number T4 cells to be around 350 (rather than 500).

  • 5 See www.aids.com.br, op. cit.

36The population under treatment comes to 70 % from the south-eastern region, which is also the most populated area with the biggest towns like Rio de Janeiro, São Paulo, Santos, etc. The fourteen million inhabitants of the city of São Paulo alone constitute 44 % of the treated cases. We do not intend to undertake a comparative analysis, but it is worth mentioning that the northern states of Amazonia, with a more disseminated and sparse population, show a lower prevalence and much fewer cases than in the south, even if the evolution of the epidemic is registering a steady increase in comparison with some southern regions, where the rate of evolution is already declining5.

37The access to ART has resulted in a shift of the morbidity and the mortality profile of HIV infection and thus in the profile of health service utilization. In the past year, the demand for outpatient services has grown significantly, with a decrease in the demand for home care, day hospital and conventional hospitalization.

38Studies undertaken by both independent and public researchers show a decrease of 38 % of the deaths due to AIDS that occurred between 1995 and 1997. The data are more significant in southern and south-eastern cities, reaching more than 50 %. There is also a reduction in the prevalence of the main opportunistic diseases such as tuberculosis, sarcoma of Karposi, citomegalovirus and other pulmonary infections.

39Interestingly, from a strictly economic point of view, the high cost of the ART (although it is decreasing regularly) is compensated for by the reduction in the expenditure for opportunistic diseases, both in terms of drugs and in terms of time spent at the hospital. A study undertaken by the government demonstrates that 146 000 hospitalizations due to AIDS were avoided between 1997 and 1999, leading to a savings of 422 million US dollars for public health. Other expenses have been avoided as well because of less need for drugs required for some opportunistic diseases (like citomegalovirus). As a point of comparison, the government spent 34 million US dollars for ART in 1996, 224 million US dollars in 1997, 305 million US dollars in 1998 and 335 million US dollars in 1999. The augmentation is due to the increasing number of people in therapy, the growing complexity of the given therapy and the change in the criteria to receive ART earlier.

40However, the increase in the foregoing years may be countered by the rise of national drug production, along with the courageous policy of not respecting the patent laws. The debates between Brazil and the rest of the world are known to everybody and there is no point here in going into detail. To briefly state the main consequences, one can notice that the price of some drugs has been considerably reduced (up to 95 % for Zalcitabina) compared with imported equivalent products. In 1999, 47 % of ART corresponding to 19 % of the total expenditure were acquired through national bodies (92 % from public laboratories and 8 % from private laboratories), while 53 % of ART corresponding to 81 % of the total expenditure were acquired from international pharmaceutical companies. More recently, these international trusts have had no choice but to reduce their prices, not because of human philanthropy but because of Brazil threatening to copy the molecules. Ironically, the country is now buying from India (Sicla) and other countries, like China, that do not use the drugs (or insufficiently, on a private scale) for their own population.

41Another point, highly debated, but which could not be anticipated, is the adhesion of the people to the treatment. In a country where the epidemic increasingly affects the poor social classes, experts and foreign scientists were raising their arms and speaking of the risk that ART drugs would become useless because of incorrect utilization. Fortunately, some punctual studies undertaken in big cities show a prevalence of adhesion reaching 69 % (this means people who during the last three days of the interviews took at least 80 % of the prescribed drugs), which is a result similar to that of other research undertaken in Europe and in America.

42Naturally, there are a few drawbacks. While the policy is oriented more towards prevention and providing remedies, than towards treatment once it is too late, there is a terrible lack of beds in public hospitals and poor people suffering from AIDS have no option but to wait or to find alternative solutions if they have family support (which is not always the case). In the north, I observed the difficulty many patients had in procuring drugs for opportunistic disease, even for some of the deadliest ones, like TB and citomegalovirus. If shortcuts in ART exceptionally occur (it has happened once or twice in the history of the National AIDS Programme), people still die from common diseases. Diseases that could have been tackled with a proper supply of cheap and existing drugs, but these do not reach the public health centres or the health reference centres (where people receive ART) for obscure administrative reasons.

43Another weak point remains in the difficulty in completing a spatial integration of the care services. By definition, the STD/AIDS programme is a vertical programme and consequently centralized. Now the states governments are facing difficulties in decentralizing it. In vast regions like Amazonia, people have to travel up to 700 km to get their monthly ART cocktail, and when they fall sick, they are hesitant to approach the existing health structures near their localities for fear of being identified, and knowing that the native staff will not be able to do anything (lack of training) other than to send them to the capital.

Conclusion: Does the Face of AIDS in India Reflect the Face of India, and Can What Be Learnt from Brazil’s Experience?

44At the present time, the success of the Brazilian programme for the free and universal distribution of drugs to every patient who needs them cannot be doubted. In addition, its repercussions may contribute to the global debate on the access of people living with HIV/AIDS to antiretroviral treatment, with strong priority being given to the countries of the South. This debate is of particular relevance today in India, where lakhs of people are dying because of the absence of care and treatment. In the land of Shiva, the national decision-makers apparently face the same obstacles: lack of public resources, social problems, rampant inequalities, poverty, immensity of the territory, the biggest population of the world, political dependence and lobbies and permanent oppression by international financial backers. But, by refusing to implement a nationwide drug policy, whatever the reasons may be, the Indian government must bear its own responsibility. A responsibility that it will have to justify to the coming generation. It argues that it is more appropriate to accentuate the prevention side (prevention in its restricted definition), but at the same time the infected people are dying without receiving basic support. This choice, which does not emerge only from structural constraints, is more a political choice than a mere decision as to public heath objectives. One has to remember it is unwonted in the history of modern humanity that discussions are still going on as to whether to treat or not to treat, whether to care or not to care, whether to let the people die or to help them to live in better conditions.

45In this conclusion, let us come back to the point I put forward in the introduction. AIDS acts as a revelation of society and as an accelerator of social changes. Governments, decision-makers and health actors involved in the struggle against HIV/AIDS need to be aware of the culturally arbitrary dimension linking their action to society. Of course it is impossible not to take into account the past and the present, the social and the cultural values, the economic and political constraints, but the advance of AIDS in India and in Brazil and its irreversible effect on the population can be an opportunity to more profoundly confront the social problems which give birth to situations of vulnerability with respect to the spread of the virus. And, here comes one of the main contributions by the social sciences: once the social and institutional configurations are clearly examined, it becomes easier to face them. Then, the “alleged cultural reason” can no longer be exploited for the purpose of prevention and information. Let us come back to the hypothesis according to which it is not relevant to speak about sexuality because it is not something people are ready to hear, or that it will induce more sex! This is more a judgement than a social reality based on scientific data. My own research, confirmed by authors in other parts in India (MANE and MAITRA 1993), tends to prove that people are looking for more adequate information which is linked more closely to their own intimate preoccupations. However, many youngsters still believe or have doubts as to whether masturbation and kissing each other can spread the virus. Others have developed the idea that anal sex can be an alternative to vaginal sex in order to avoid contamination. Who then is responsible? It is partly because the Indian government did not dare to give clear messages about the modes of transmission of the disease that people do not accurately know the routes of contamination and, indirectly, have been more prone to get infected. Naturally, Brazil made the same mistakes in the very beginning, but was promptly able to reconsider them, even if misconceptions and lack of information still persist in many areas, including cities, and among some populations. Self-criticism has positively contributed to the evolution of the Brazilian AIDS policy, while India, on the contrary, seems to make two steps forward, one step backward. For how long?

Bibliographie

References

Atkinson, S.J. & Facanha Farias, M., 1995. “Perceptions of Risk during Pregnancy amongst Urban Women in Northeast Brazil”, Social Science and Medicine, 1995, 41 (11): 1577-1586.

Bourdier, F., 1999. “From HIH/AIDS Epidemic to Medical and Social Sciences: What Kind of Collaboration?” in Ashok Sahini (ed.), HIV/AIDS in India: Experiences, Present Status, Issues, Research and Documentation, Proceedings of Sixteen National Conference of Medical Sciences in India, Bangalore, December 1-3, 1996, Bangalore, Camara Press, 1999: 205-218.

Bourdier, F., 2000. “Aids Diffusion and Control: a Comparative Perspective between India and Brazil”, The Dekkan Geographer, Pune (India) Special Issue 2000, 13 p.

Bourdier, F., 2001. Sexualité et sociabilité en Inde du sud. Familles en péril au temps de sida, Karthala, Paris, 427 p.

Bourdier, F., 2001. “Sexualité, marge et risque d’exposition au VIH en Inde méridionale: isolement marital, familial et contexte de multipartenariat”, in M.-E. Blanc, L. Husson, & E. Micollier, eds., Sociétés asiatiques face au sida, Paris, 2001, L’Harmattan, Collection Recherches Asiatiques: 93-120.

Daniel, H. & R. Parker, 1993. Sexuality, Politics and AIDS in Brazil in an Other World, London, The Falmer Press.

Dube, S., 2000. Sex, Lies and Aids, New Delhi, 2000.

George, A., 1996. Understanding Sexuality, Seminar, November 1996, n° 447: 26-35.

George, A., Sexual Behaviour and Sexual Negotiation among Poor Women and Poor Men in Mumbai: an Explorative Study in Mumbai, Unpublished, 138 p.

Goldstein, D.M., 1994. “AIDS and Women in Brazil: The Emerging Problem”, Social Science and Medicine, 1994, 39 (7): 919-929.

Herdt, G., (ed.), 1997. Sexual Cultures and Migration in the Era of AIDS: Anthropological and Demographic Perspectives, Oxford, Clarendon Press.

Hunt, C.C., 1996. “Social Vs Biological: Theories on the Transmission of AIDS in Africa”, Social Science and Medicine, Oxford, 1996, 42 (9).

Kapadia, K.M., 1966. Mariage and family in India, London, 1966, Oxford University Press.

Kapur, P., 1994. The Indian Call Girls, 14ème éd. Dehli, 1994, Orient Paperbacks.

Kongsin, S., 1997. “Economic impacts of HIV/AIDS Epidemic and Development in Asia and the Pacific”, St Leonards NSW, Allen and Unwin: 89-101.

Mitra, J., 1997. Women and Society: Equality and Empowerment, New Delhi, Kanishka Publishers, 236 p.

Morrachini, Ch., 2001. Étrangers en France: comment se soigner? Remaides, juin: 22-24.

Mselatti, Ph., Vidal, L. & J.-P. Moatti (sous la dir. de), 2001. L’accès aux traitements du VIH/sida en Côte d’Ivoire, Paris, ANRS, 327 p.

Parker, R., 1997. Políticas, instituições e AIDS. Enfrentando a Epidemia no Brasil, Rio de Janeiro, Jorge Zahar Editor / ABIA, 183 p.

Passarelli, C.A., 2001. As patentes e os remédios contra aids: uma cronologia, Abia Boletim, julho-setembro, ABIA, 46: 8-9.

Scheper-Hughes, N., 1984. “Infant mortality and infant care: cultural and economic constraints on nurturing in Northeast Brazil”, Social science and medicine, 1984, 19 (5): 535-546.

Stralen (Van), C., 1986. The struggle over the national health care system in Brazil, Utrecht, 1986, Utrecht University, 301 p.

Vidal, L., 2000. Femmes en temps de sida, Paris, 2000, Presses Universitaires de France, Paris, 195 p.

Notes

1 Information given by Paulo R. Teixeira, coordinator of the National STD and AIDS programme.

2 For more details, see the government site which is regularly updated: www.aids.gov.br/

3 The use of ART is indicated for symptomatic HIV-infected persons, for non-symptomatic individuals with significant laboratory changes, for HIV+ pregnant women, aiming at the reduction of vertical transmission, and for the prophylaxis of HIV infection in health professionals after exposure to potentially contaminated biological material.

4 Studies have shown the very significant economic benefit of such a policy. But one may wonder whether these measures have the purpose of concealing the lack of beds in the hospitals and the difficulty of the government to deal with all the patients? In fact, it should be recognized that most of the public hospitals do not have enough places in their separate wards restricted to AIDS patients, and that many private hospitals do not want to deal with common infected people. But, on the other hand, the new strategy promotes a demedicalisation which is sometimes expected by the layperson.

5 See www.aids.com.br, op. cit.

© Institut Français de Pondichéry, 2004

Conditions d’utilisation : http://www.openedition.org/6540

Acheter

Rechercher dans OpenEdition Search

Vous allez être redirigé vers OpenEdition Search