States of denial: AIDS and South Asia
For long HIV (Human Immuno-deficiency virus)/AIDS (Acquired Immune Deficiency Syndrome) was thought to be a disease of the West transmitted through 'deviant' practice. Then AIDS devastated Africa, especially its women and children, and it was suddenly not so obvious that 'deviant' practice had anything to do with it. But even so, it was thought to be an African disease, caused by the licentious conduct of African men. Orthodox South Asian values, it was assumed, would be a sufficient vaccine against the rampant virus. This unfortunate attitude still persists, with devastating consequences.
In the last decade, much has been written and spoken in the media about the disease and the havoc it wreaked and continues to wreak in Africa, without making any serious dent in the obtuse approach of policymakers within South Asia. It is, therefore, not surprising that a health crisis of unimaginable proportions looms over close to a billion and a half people, threatening to afflict some 25 million people, and hence directly affecting some 250 million who will have to live with the premature, painful and entirely avoidable sickness or death of at least one close relative. Of these, a minimum of a 100 million could be immediate financial dependents. Add extended family and friends and upwards of 500 million will be connected, in differing degrees of intimacy, to AIDS bereavement. This is more than one-third the population of the most populous and densely packed region of the world. These may be back-of-the-envelope calculations but, if anything, they perhaps err on the side of caution than of excess. There are better ways for a billion and a half people to learn about the imprudent causes and lethal consequences of a disease that can be prevented through more efficient and less debilitating means.
Factor in the statistic that HIV/AIDS primarily strikes the 15-40 age group, ie the group that is economically the most active and productive, and it becomes clear that the countries of the Subcontinent are staring uncomprehendingly at a social and economic crisis that will accelerate exponentially in the coming decade. All this for want of any official recognition of the need to seriously prevent the spread of a virus that has so relentlessly announced it presence through chilling statistics and tragic stories. Worse still, medical solutions are not about to come to the aid of negligent governments. All the recent attempts at developing a medical vaccine against HIV have come to nothing and the prospects are not encouraging.
The latest trials in February this year for a vaccine developed by the California biotech company VaxGen have failed. Even had VaxGen's efforts been successful, it would not have made much of a difference to South Asia, since medical research has concentrated on developing a vaccine for HIV subtype B, common in Europe and the US, while the strain prevalent in South Asia is subtype C. Under such circumstances, it takes remarkably dense polities to ignore a disease that could undermine South Asian society and bring it to the brink of implosion. Unfortunately, in public health matters at least, the polities are indeed remarkably dense, else we would not have been witness to the neglect of a decade and a half and the persistence of the gung-ho denials that characterise state reactions to prognostications of the coming crisis.
Precarious trails
There are a great many compelling reasons why governments ought to approach the problem with more zeal, earnestness and coordination than they have displayed so far. For one, the geographical and demographic context is calamitous. China and India, sharing an extended border, between them account for over two billion people. This is a huge demographic surplus that accompanies an equally huge development deficit. The virus has already carved out well-established lines of transmission into the interiors of both countries. It is true that India's border with China is not particularly porous. But the eastern end of that border adjoins the virus entrepot of Asian AIDS – regions in Burma that serve as a junction for HIV strains to meet, recombine, mutate and proliferate through human agents who for various reasons are able to circumvent nation-state regulations.
According to experts tracking the trajectory of different virus strains, the frontline of the AIDS crisis lies in small towns on the China-Burma border where Chinese truckers, jade and ruby traders, and drug merchants from Bangladesh, India, Pakistan and Southeast Asian countries gather to conduct business and partake of the local sex industry. Random unprotected encounters that typically involve a few sex workers with a high turnover of multinational clients, some of whom shoot drugs, is sufficient to create an epidemiological context which is more than ordinarily conducive for the virus to turn even more virulent than it currently is. Virus maps charted by Japanese scientists suggest the emergence of a recombinant strain, Type B/C, which is a mutation of the Southeast Asian Type B, and the Indian Type C, that incubated in these border towns and then swept three provinces of China along the heroin trafficking route.
Since these border towns have South Asian visitors who walk a precarious trail, and very likely engage in the same practices back home as they do on the Burmese border, it will not be long before the new strain sweeps across South Asia as well. Manipur, one of the most severely AIDS-affected states in India, is not only on the Burmese border, but is also a conduit for heroin besides being home to a long-standing insurgency and the dislocations that attend a violent conflict. In Manipur, over 50 percent of intravenous drug users are HIV-positive, an increase of 45 percent in infection rates over a two-year period.
It is not difficult to see how the new variant of the virus can transmit itself not just to the rest of the country, but also to Nepal and Bangladesh, two impoverished countries in the vicinity of this zone of concentrated risk convergence. There is a great deal of seasonal migration, particularly of single males, from these two countries into India and back again, all of it unmonitored. The possibility of HIV cutting across the epidemiological barrier between the high-risk groups and the general population is therefore very high. The loop of transmission has enlarged commensurately with the increase in the rate of mobility of the human populations and the lengthening of the routes of migration.
From the available pattern it would seem that in Bangladesh, India and Nepal the disease is teetering on the edge of spilling over into a larger catchment of vectors, if the projection of HIV-infected populations of 20-25 million in the next five years is anything to go by. The institutional mechanisms of the Subcontinent can no longer afford the luxury of the belief that the disease can be confined within circumscribed epicentres of incidence, restricted to conventional high-risk groups. There are no longer such conceptual fig leaves to hide behind, and perhaps there never were, given that the social institutions and norms of the Subcontinent rendered meaningless the epidemiological distinctions elaborated in the West. It is not surprising that today over 90 percent of HIV-positive women are married and monogamous. What is clear is that, if anything, the values and morals of orthodox society, far from keeping the virus at bay, may actually have encouraged its spread.
Orthodox assumptions, unorthodox failures
In the early phase of its global history, HIV took its time to move out of high-risk groups in the West, and therefore a distinction between the risk-prone and the risk-free was valid. Further, this distinction could be sustained because the relatively less orthodox societies of the West were socially able to come to terms with the causes of the disease and the modes of its transmission. These societies were able to open up private life to public scrutiny and discussion. Besides, in the West, women are permitted greater choice in entering into conjugal relations on their own terms and, most importantly, are empowered to a greater degree to assert the right to safe sex within relationships.
By contrast, in the Subcontinent, sex is a theme that cannot be discussed publicly, individual choice for young adults in fundamental matters is strictly limited, and women's ability to assert their rights and preferences, particularly when sexual issues are concerned, is illusory. In South Asian countries marriages are arranged with grooms whose antecedents relating to HIV risk behaviour are almost never verified because such things do not enter into the negotiations between the parents of the couple. In such circumstances, the conventional definition of high-risk groups and the probabilities of transmission based on such a definition are vacuous. On the Subcontinent, owing to the nature of the matrimonial transaction, the risk factor in society is multiplied because the size of the high-risk group is twice the number of those who engage in high-risk behaviour. This will mean that a realistic redefinition of the term 'high-risk' is necessary if the statistical magnitude of the problem is to be accurately captured.
Unfortunately, when the issue of AIDS first surfaced in public, everything connected with it, including the statistical estimations of its spread and the epidemiological categories that arose on the basis of its social modes of transmission, had Western assumptions. This was the first mistake. While the probability of biological transmission, as between HIV-discordant couples (ie where one of the pair is HIV-positive), may not vary significantly across societies, patently the social rates of transmission will depend on the sexual protocols of each society. The probability figures of biological transmission are not a sufficient basis for projecting the levels of risk in societies where marriage itself can be classified as high-risk behaviour. Such probability statistics obviously never visualised the HIV-positive AIDS-widows of South Asia, who have to live the rest of their lives in shame, after having been abandoned by their families.
Where a veil of secrecy hangs over the virus because of the orthodox tendency to pretend that people do not have sex, that 'we do not do drugs' and that homosexuals are deviant people who can be 'cured' through marriage, and where the nature of the matrimonial system opens up a route of transmission into the population that does not engage in risk behaviour, the definitions and estimations of populations at risk ought to have been substantially different. Western experts and their native clients, the majority of whom typically wear such enormous analytical and cultural blinkers that they are unable to understand the societies that they speak so much about, made the first mistake.
But this was a mistake of ignorance that could always be rectified by redefining the nature of the problem and investing effort and resources in tune with the more precise estimation of its magnitude. By far the bigger mistake has been committed by the governments of the Subcontinent, which allegedly are more connected to the people who elect them to office. They have not only failed to recognise the greater danger of infection that the social specificities of the region pose, but have also neglected to take any action to address even the narrower scale of the problem that was originally presented to them. Thus, barring some perfunctory activity, intended to convey the impression that note had been taken of the disease, there was not much of an attempt, particularly in the early days, to even inform the conventionally identified high-risk groups.
Instead, it was left to non-governmental organisations (NGOs), now rechristened civil society organisations by the global aid-combine led by the World Bank, to take the initiative independently of governments, and sometimes in the face of official hostility. The overall climate in which non-government initiatives function is not conducive to the efficacy of prevention on the scale required in populous societies. Part of the problem is that ever since HIV began attracting funds, a great many spurious organisations, some of them 'owned' by relatives of bureaucrats, have come up as family businesses. This not only diverts urgently needed resources away from the prevention campaign, but also undermines the credibility of authentic and bona fide organisations which are attempting to deal with the problem in very difficult circumstances.
Deficiencies in the Indian approach
It is a measure of the Indian government's utter lack of concern that it has not introduced enabling legislation to override existing laws that actually obstruct AIDS activists. For instance, two years ago, police raided the premises of an AIDS prevention and awareness organisation in Lucknow, the capital if India's most populous and impoverished state of Uttar Pradesh, invoking an archaic colonial law (Section 377 of the Indian Penal Code) against homosexuality that continues to be in force. Four of its employees were taken into custody and held for over six weeks on the grounds of "conspiring to commit unnatural acts" and for possession of AIDS awareness material which the police deemed to be of a pornographic nature. Ironically, the organisation in question has been officially sanctioned by the government of India to undertake outreach work on AIDS prevention.
In another incident, a couple belonging to an NGO working in Almora district in the hill state of Uttaranchal was arrested under the National Security Act, a piece of draconian legislation intended for, and normally invoked to summarily detain, those who are deemed to be a threat to the nation-state. Clearly, the threat to the economic well-being and social stability of the nation-state from a virus that moves about with such ease has not been adequately recognised. Instead, the government at the centre has been more enthusiastic about pandering to the allegedly religious sentiments that get offended every time a public health issue involves even the slightest reference to sexual practices.
In fact, given the nature of government harassment of people working in different parts of India, there are two dismal conclusions to be drawn. The HIV/AIDS prevention campaign, especially in the countryside, will not achieve much if the attitude of government officials lower down in the hierarchy is as obtuse as that of the orthodox segments of rural and semi-rural society. This attitude of the lower bureaucracy is in no small measure an outcome of the lack of a coordinated national level policy on AIDS at the higher level of government.
This bureaucratic hostility to the public discussion of 'sensitive issues' and the lack of systematic government policy and implementation is not surprising in a country that was in collective denial for six years after the first infection came to light. It was not until 1992, after the prevalence levels had shot up to unacceptable levels, that the government could bring itself to make the hesitant admission that Indian morality was not a sufficient deterrent to the proliferation of the disease. International funding for prevention was finally accepted and the first national level body, the National AIDS Control Organisation (NACO), was established to combat the problem.
The local institutions being clearly ill equipped to undertake the task, it was left to the World Health Organisation (WHO) to devise a prevention programme that was financially supported by the United States Centres for Disease Control and the World Bank to the tune of a meagre USD 85 million. The first phase of the AIDS control programme involved the screening of blood through the distribution of kits to verify the HIV status of donated blood, and the training of personnel to disseminate information about the disease. Nothing of consequence appears to have been achieved 10 years down the line, and many AIDS-prevention trainees themselves subscribe to outlandish notions of how the virus can spread. When trained personnel fan out and spread the word that HIV infections are caused by the sharing of combs and visits to cinema halls, it becomes obvious that the government's typically bureaucratic solution of setting up yet another bureaucratic body has failed.
Over the decade, the number of NGOs being trained and funded by NACO has gone up to 1800. In 1999, the Indian programme, still under the guidance of the WHO and the World Bank, moved to its second phase, with a budget of USD 300 million. The second phase of the programme involved the setting up of new clinics and the dissemination of television and radio advertisements. Evidently nobody had paid heed to the fact that 'radio penetration' in the country had come down substantially, and that the depth of television penetration in rural areas and the efficacy of brief spots warning people against AIDS is fairly low. Making use of truly mass forms of communication such as commercial film to explain the idea in detail through familiar narrative forms never entered the picture.
Instead, bureaucratically controlled central funds moved ponderously and hierarchically to state level units, where, in the absence of any monitoring and regulatory mechanism, the money was ill spent or well-spent according to the inclinations of those in charge of the expenditure at the regional and sub-regional levels. According to an evaluation by a team of international experts, only a third of all Indian states have made any progress in implementing the programme (as distinct from progress in achieving prevention), while in another third no work has commenced. Tragically, the most populous states, like Bihar and Uttar Pradesh, have not initiated a single project under NACO´s scheme.
The lethargy in dealing with HIV is pervasive. The Indian parliament has taken up AIDS issues in fits and starts. It introduced legislation imposing standards for condom manufacturers, as it should. But such measures mean little in a country that is notoriously lax in the use of prophylactics and where as much as seven percent of all adults are affected by sexually transmitted diseases. Apart from this, all the apex body did was to create a parliamentary committee on HIV-AIDS, whose convenor once made an effort to visit a sex-work locality a year after his appointment. In the meanwhile, all other sources of infection continue to thrive as well, with no methodical attempt being made to reach intravenous drug users, professional blood donors and unauthorised blood banks, which thrive because the authorised blood banks do not have sufficient stocks and are concentrated in urban areas, leaving the rural population to fend for itself.
Subcontinent-wide struggles
The situation, if anything, is worse in the other countries of South Asia. In almost all of them, the AIDS campaign is led by NGOs without any form of government support. In both Pakistan and Bangladesh, the number of HIV infections and reported AIDS cases are still very low, but an informed minority is convinced that the prevalence rates are much higher than the official figures pretend. In both countries, both the statistics and the campaign have to contend, as in India, with the antagonism of religious fundamentalists who resist the idea of public discussion and the indifference of politicians, who themselves are widely known to be promiscuous both in political and sexual matters. In both these countries, NGOs have found it necessary to go in search of responsible religious leaders to bring up issues that the orthodoxy resents indignantly.
In Nepal, where the current prevalence rate is 30 new infections a day, a figure that can be expected to rise, there are neither funds nor facilities for a campaign to be launched in the mid-hill, tarai and mountainous regions of the country. Nepal is urgently in need of preventive awareness since it is greatly affected by migration, trafficking and the dislocations of civil war.
Everywhere on the Subcontinent, governments have in recent years enthusiastically set up more and more HIV bureaucracies that are supposed to take care of the problem in sanitised ways. Pakistan woke up to the HIV threat as late as 1994 by setting up a four-year National AIDS Prevention and Control Programme to expand on the limited activities of the 1987 Federal Committee on AIDS. The AIDS programme did not have independent status, but was included along with three other preventive health programmes, in the World Bank funded Social Action Programme (SAP). Despite the official claim that prevention is the mainstay of the Pakistan AIDS campaign, the level of actual commitment is evident from the fact that it was clubbed along with other routine prevention efforts, without any recognition of the special attributes of AIDS.
Predictably, the early phase of the SAP had very little to do with prevention, the emphasis being on developing laboratory services and surveillance. SAP moved into the second phase in 1997 to last till 2002, by which time the focus was on managerial and organisational strengthening at the federal and provincial levels of the national AIDS programme. Some lukewarm prevention messages were disseminated via the print and electronic media, ensuring that the majority of the population was left out of the loop. And even the surveillance programme did not amount to much with a total of 39 centres being established for a population in excess of 150 million people. It is not at all surprising that the reported cases of HIV/AIDS in the country is so low.
Bangladesh, the other populous country of the region, displayed the greatest bureaucratic enthusiasm. Since 1985, it has been setting up organisations to keep pace with the proliferation of the virus. In that year it set up a 'multi-sectoral' National AIDS Committee (NAC) to function in an advisory capacity. It then set up a 'multi-disciplinary' Technical Committee (TC) to advise the advisory body, NAC. The TC functions include assisting the NAC to formulate programme frameworks; to guide programme personnel in the design, development and monitoring/reporting of their activities; and to review research protocols to be funded by the government. In other words, neither organisation had much to do exclusively with prevention.
The urge to set up more and more organisations was obviously getting stronger. In 1987, the government of Bangladesh started its AIDS prevention activities with technical and financial assistance from the WHO Global Programme on AIDS. A year later the government's planned prevention activities finally began under a Short Term Plan, which focused on determining HIV/AIDS prevalence and in developing prevention and control measures, particularly in the health sector. After a lull of two years, in 1989, a three-year 'Medium Term Plan' was formulated. During the 1990s, fresh activities were carried out, with WHO support, in areas of surveillance, laboratory diagnoses, and strengthening technical, financial, health education and management capabilities, all of which came under the head of 'prevention'.
In 1990, the HIV-prevention activity began to draw circles around itself, with the formation of a coordination committee, constituted by key functionaries from institutions already engaged in HIV/AIDS related activities. Soon after, the tendency was further reinforced with the formation of the AIDS Information and Awareness Campaign Committee, led by the Ministry of Health and Family Welfare, and consisting of representatives from several ministries, WHO, other donor agencies, media and NGOs. In short, it took seven years and several committees before the first awareness campaign was launched. Eventually, in 1996, 11 years after the first committee was formed, the Bangladesh government signed an agreement with the United Nations Development Programme (UNDP) to set up infrastructural facilities for a comprehensive AIDS control programme known as the 'Bangladesh AIDS Prevention and Control Programme' which continued until 30 June 1998.
In addition, in 1995, just so as to ensure multiple layers of bureaucratic protection against the virus, the Bangladesh Director General of Health Services formed an 11-member 'task force' to initiate the process of policy formulation. Policy had begun to be formulated 10 years after the first advisory committee came into being. In October 1996, the national HIV/AIDS policy document was reviewed by a 19-member core group, after which it was examined by a multi-sectoral consensus workshop in which 10 stakeholder groups participated. The cabinet approved the resulting final document in 1997. After all this hectic and committed activity we still do not have realistic figures for prevalence in the country, nor the beginnings of a programme that pierces the veil of silence and secrecy by roping in influential members of the clergy on a nation-wide basis. Statistically Bangladesh is free from the virus. Medically it is a different issue.
Survival strategies
What is evident from all that has gone on is that, barring the proliferation of superfluous apex level organisations controlling foreign funds and with no specific purpose, there has been no clear response to the epidemic in South Asia. There is neither accountability nor an auditable mandate. For the rest, there are a large number of NGOs of varying credibility either soldiering on under difficult circumstances or helping themselves to some easy money. Given the general lack of interest among South Asian governments, it is not all surprising that the most urgent appeals and the few running programmes have come at the behest of multilateral bodies.
A noticeable aspect of the AIDS programmes of the Subcontinent is that they were all initiated only when external funding was promised. In this general atmosphere, where official interest in HIV is predicated on the availability of sufficient tranches of hard currency, periodically, international bodies mandated to oversee public health and development issues in developing countries have been forced to join hands with the concerned civil society groups to keep the agenda on the radar screen. On such occasions, governments advertise their heroic efforts in addressing public health issues and make their by-now familiar rhetorical declarations about the magnitude of the problem and the renewed efforts they are making to contain the menace. And all the while, the window of opportunity that is still available is quickly closing in the face of those who are struggling to make use of it.
The latest of such efforts was the high level conference, "Accelerating the Momentum in the Fight Against HIV/AIDS in South Asia, organised by UNAIDS and the UNICEF Regional Office for South Asia. The conference brought together global leaders in the fight against AIDS, and government officials, parliamentarians, media, children and young leaders from South Asian countries. The 'Kathmandu Declaration', one outcome of the conference, called for, among other things, increased political commitment, strong leadership from organisations and individuals contributing to the fight against AIDS, and renewed efforts to overcome stigma and discrimination. The hope was that this initiative, which included detailed presentations by senior representatives from the governments of Thailand and Uganda, the two success stories in reversing the spread of HIV infections, will stimulate governments in the region to stop looking at the disease as a source of funds and start viewing AIDS as a development issue.
Perceiving AIDS as a development subject would be the first step in the global struggle against AIDS, and one that may convince sceptics that the attention to this disease does not necessarily divert energy from other afflictions like tuberculosis (TB) and malaria. And indeed, money spent on HIV prevention is being bundled with funds for combating TB, malaria and anti-microbial resistance since all of these are crucial to limiting the mortality rates associated with AIDS. Further, the moment combating AIDS is seen as part of the development effort, governments will need to look for integrated solutions that strengthen health care systems, increase hygiene and sanitation awareness, reduce disparities in opportunity and raise the income levels of the most marginal and hence vulnerable sections. The calamitous nature of the disease can be converted into an opportunity to materially alter the structure of South Asian societies. But until that happens, AIDS will continue to haunt the region, and the pallbearers will have no time for rest.