A Brief Report

The four hour workshop was well attended, despite the fact that the room was cramped and many who wanted to come in could only stand at the door. With an enthusiastic participation, it continued well beyond its scheduled time. Since several participants could not understand English or Hindi and others were more comfortable speaking in their mother-tongue, a brief summary translation of each presentation was done by other participants or the moderator.

The presentations and discussion focused on a number of grey area related to HIV/AIDS control, which are widely acknowledged issues but rarely debated because they go against the grain of the prevailing dominant perspective.

Those who made presentations were:

1. Ms. Rajeshwari, Children in Crisis, Bangalore

2. Ms. Chandrika, Children in Crisis, Bangalore

3. Ms. Shakunthala, Children in Crisis, Bangalore

4. Dr. Vijay Thakur, Freres’ DeNos Frere’s & AIRTDS, Raigad, Maharashtra

5. Dr. Alpana Sagar, Centre of Social Medicine and Community Health, JNU, New Delhi.

6. Dr. C. Sathyamala, Jan Swasthya Sahayog, Bilaspur, Chhatisgarh and Medico Friend Circle, Delhi

7. Ms. Flavia Agnes, Majlis, Mumbai

8. Dr. Amita Dhanda, NALSAR, University of Law, Hyderabad

9. Dr. Pradeep Krishnatray, Centre for Research and Education, Hyderabad

10. Dr. Roy Laibungfam & Ana, CORE (Indigenous People’s Centre for Policy and Human Rights in the North-East), Manipur

11. Mr. Shibesh Regmi, ActionAid Nepal

The facilitator was Dr. Ritu Priya (representing Swasthya Panchayat-Lokayan, Delhi) who initiated the discussion by presenting the organisers’ perspective on ‘why a workshop on AIDS at the ASF’. She spoke of AIDS as a source of suffering in the present times, not only due to the disease itself but due to the perspective of the control efforts as well. Despite over fifteen years of the official programme as well as NGO/civil society action, there was poor acceptance of the problem in low prevalence areas, high stigma and discrimination of affected persons and groups, and little inputs for support and care of PLWHAs. This workshop was envisaged to examine the question ‘why’ this has happened. While recognising the inherent limitations in any attempt at responding to such a new disease, it was therefore considered all the more important that the experience is examined, reasons for limitations analysed and ways of strengthening the response identified. The underlying assumption was that a dialogue across perspectives is necessary for more realistic and effective policy and planning of control efforts. It was thought that the lack of space within the mainstream forums for articulation of well thought out diverse perspectives for HIV/AIDS has been one reason for practice of counter-productive approaches, and this lack of dialogue needs to be overcome.

Secondly, AIDS exemplifies the negative impact, and its control approaches reflect the characteristics of globalisation, that everyone had gathered at the ASF to fight and build solidarity against. For instance further marginalisation of the marginalised, and the hegemony of a market friendly, individualistic, competitive world view are hallmarks of globalisation and are being promoted by the dominant approach to AIDS control. The individualised notion of Human Rights with emphasis on individual freedom and choice which is being virtually posed in opposition to Social Responsibility, reflects this worldview in the AIDS control perspective.

Thirdly, there exists a divide between people working in AIDS and others working on related issues such as ‘health’, ‘gender’, and ‘development’. The ‘AIDS-wallahs’ espouse the issue with fervour and the other activists/academics/NGOs do not want to touch it because they feel it is over-hyped. The ASF, which attempted to articulate the possibility of ‘Another World, Another Asia’, seemed an appropriate forum to bring different streams together to articulate these issues. The proposition set out in the background note to the workshop is that at the macro-concept level, in addition to ‘Human Rights’ we need to add ‘Social Responsibility’ and ‘Pluralism’ for all AIDS activities.

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Presentations began with three of the women participants sharing their experience of husbands with HIV infection/AIDS and their own subsequent conversion to seropositivity. One narrated how her problems started within a year of getting married when she had a child who was found to be HIV positive. Both families disowned them because they had a ‘love marriage’ and her husband also accused her of having brought the infection. He separated from her and himself died after 3 months. She worked as housemaid to earn for her son’s treatment and their livelihood. Later she came in touch with Children-in-Crisis and both got treatment. But now side-effects to the anti-retroviral drugs have started.

Another had acquired the infection through her husband’s open wounds which she regularly cleaned and dressed. The doctor had not informed her of the need to protect herself while she did the dressing when he had instructed her to do it. Infact he had turned her husband away saying that there is no treatment for him! After her husband died she had a fibroid and got surgery done for which the surgeon charged more than he quoted earlier, saying that extra cost was due to her HIV status.

One young woman shared her dilemma of a different kind. She is a widow with two sons, is herself HIV positive, and has a family of mother and brothers who are caring and concerned about her welfare. She has not told them her HIV positive status and they are trying to persuade her to marry again, which she does not want to do because of her HIV positive status, but she was under pressure and doesn’t know what to do.

The ensuing discussion brought up the issue of whether the possibility of transmission through dressing of wounds etc. should be made a part of the IEC. It was generally acknowledged that the doctors should inform nursing attendants and family about the precautions to be taken i.e. gloves etc., but it should not be part of general IEC. The irresponsible behaviour of the medical professionals had caused grevious suffering to the woman in so many ways that it stood clearly indicted and left participants feeling numb at the thought of such violation of professional ethics and responsibility. The problems in accessing any medical care and the issue of side-effects with ARVs also got highlighted.

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Dr. Vijay Thakur, psychotherapist and a person who has been actively involved for long with organi-sations of sex workers and counseling activities in the HIV/AIDS programme, spoke of several problems in the structure of the programme. He highlighted the preoccupation with prediction of large numbers of HIV infected persons – ‘the dyscounting’ as he called it. On the other hand, even the small numbers that were coming for treatment were not getting adequate attention – ‘the discounting’ of those asking for support and care. He then spoke of the experts and planners who were ‘getting discounts’ in terms of foreign jaunts, conferences, and large funds to handle. He suggested that it was time to take stock seriously of the claims of success of policies, programmes and projects so as to salvage the rapidly narrowing window period for an effective response. In order to do this, he emphasised the need for public accountability of experts, programmers and administrators and the planning of activities from the locus of ‘the people’ – the affected groups and individuals. NGOs in his view, despite having serious problems and need for self-correctives, were also the ones who could act as the bridge between the community/social groups and the policy makers/donors. But the central accountability lay to ‘the people’ and their perspective.

Six women from sex workers’ collectives partici-pated and they raised questions about care and services for STDs treatment. They also pointed out the findings of a scientific study undertaken by a respectable university under the Ministry of Health & Family Welfare in Andhra Pradesh and Karnataka, which showed high correlation between STD prevalence and police violence against women.

Dr. Alpana Sagar, a physician and public health analyst spoke of the overall condition of the health service system which was supposed to provide diagnosis, treatment and care to PLWHAs. She presented data that demonstrated that the ‘health sector reforms’, part of the prescription by international agencies promoting globalisation, were destroying the public health services as an integrated system. The vertical programmes of AIDS, TB, Malaria control as well as RCH were distorting the focus of health services, detracting from the general health services. Priorities for budgetary allocations and attention by workers was skewed to the extent that they were becoming defunct. The decimation of the public health services and thereby further decreasing access to the poor in a situation where access was anyway low. An expanding private sector which provided treatment to anyone ready to pay and followed practices to maximize profits, was not conducive to ensuring quality treatment for PLWHAs.

The stigma and discrimination was being compounded by the attitude of the doctors behaving unethically. Dr. Sagar also emphasised upon the need for the doctors and planners to understand the perspective of the affected persons and groups who would perceive issues from the everyday experience rooted in their social, economic and cultural context.

The ensuing discussion brought out issues of the treatment regimens and the need for a responsible medical profession that adequately tailors treatment to suit the individual patient and monitors side-effects. It was pointed out that the rational use of ARVs also still needs to be worked out in our context. The technological fix of ‘disposable syringes and needles’ was posed as a means to absolve the medical system of dealing of negligent and irresponsible behaviour of its professionals.

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Dr. Sathyamala, epidemiologist and public health activist, well known for her work on rational and safe use of contraceptives as well as on the biological effects of the Bhopal Gas Tragedy, especially from the women’s health perspective, spoke of community based health research currently being encouraged by international funding agencies and undertaken by formal research institutions and NGOs. She pointed out that the research is being undertaken across a power equation where the researcher represents a higher status in terms of social position and legitimate knowledge because of which they can ‘study’ the poor and other socially marginalised groups as objects. However she also pointed out that the response of ‘the powerless’ has not been as passive victims only. When the population based research was state sponsored and the state was not trusted, one form of resistance had been non-cooperation with the investigator and giving no, incomplete or false information. Now the research is being done through NGOs, the funders using the good rapport and trust of the NGOs in the community to get better data. The NGOs need to recognise this as it puts a great responsibility on them, to ensure that their research does not get used against the interests of the community.

The current population based studies do include protecting rights of individual participants through consent taking and ensuring confidentiality. However, there is no mechanism to deal with the rights of communities. Illustrating the point through the case of research on Reproductive Tract Infections and Sexually Transmitted Diseases, she contended that they gave ‘legitimate reason’ for researchers to study private sexual histories, relevant for fertility control as well as diseases. But the formulation of questions, interpretation of data and recommendations drawn out of the findings demonstrate their agenda driven bias. For instance the research on RTIs is focused on STDs, ignoring TB of the reproductive tract and Pelvic Inflammatory Disease, two common causes of reproductive tract morbidity in women of the third world and poorer sections. While this kind of research highlights important problems of women, it also legitimises the distortion of priorities which are not in the interests of the community or the marginalised in the community.

Secondly when the ‘external’ NGOs do not develop adequate links with the community, the latter retaliates to such violations by collective protest, as happened, for example, in the case of an NGO in Uttaranchal. Therefore the responsibility of population based health researchers and NGOs to the community needs to be better defined.

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Ms. Flavia Agnes, well known legal expert and activist on women’s issues, especially domestic violence, spoke on the rights of PLWHAs from a gender perspective. Based on the experience of several HIV positive women who have come to her for legal advice (where breach of trust in terms of information about the husbands HIV positive status was a common experience) and on the other cases that have been brought before the courts and have raised public debate, she spoke of how HIV impacts differently on men and women because of the diverse social situation of the two. Therefore a gender perspective was essential.

She illustrated this with the issue of right to marry of PLWHAs. She felt that in our social context it actually means the right of PLWHAs to marry non-PLWHA women. Those arguing for the right of PLWHAs to marry were ready to allow for ‘informed consent’ of the woman. But even this, Flavia thought, was inadequate because, in all other laws which relied upon consent of the woman for protection of her rights, the women’s movement had always argued that women doesn’t have ‘agency’ and therefore cannot use the clause of ‘consent’ for protecting their own rights. Therefore she posed it as an issue of the right of the man to marry versus the right of the woman to survival.

Some participants argued that condom use could ensure safety of the woman from getting infected from the husband and thereby the rights of both would be safeguarded. According to Flavia this was again inadequate as such responsible behaviour by the men has not been the experience of women, whether for birth control or for preventing STDs and HIV.

Dr. Amita Dhanda, Professor at the NALSAR, Hyderabad, well-known for her work on legal dimen-sions of the social sector, took on the issues from Flavia, presenting a somewhat different view. She forcefully argued that legal instruments for such human issues cannot be in black and white – ‘right to marry’ versus ‘no right to marry’ – but must deal with the grey areas in a more humane manner. For instance in this issue, HIV positive status cannot be a reason for immunity to violate another person’s basic human rights. On the other hand any infection or disease cannot be the basis for denial of rights, as all the struggles for repealing of discriminatory laws for persons with leprosy, mental handicap etc. have argued. So, the men must be given the chance to behave responsibly, i.e. genuinely inform the woman about the risk and then take actual consent from her and practice ‘safe sex’ so as not to transmit HIV to her. Then, anyone who does not do so should be dealt with strictly just as any person who has jeo-pardised the basic right to life of another human being.

She pointed out the difference between a policy and a law, the former being more amenable to change based on experience of implementation while it is much more difficult to change laws once they are promulgated. Therefore the legal system and judiciary must not take over the role of policy making and administrative decisions. Approaches of the judiciary while deciding upon such issues have largely been Coercive or Preventive, both violating the rights of affected persons in the name of ‘public good’, without the judges acquiring requisite information about the epidemic and the implications of their judicial pronouncements upon it. The Humanist approach was rare. It required dealing with the grey areas, allowing within the legal instruments for people to be ‘responsible’. It also meant that the legal system itself take the responsibility of judges acquiring appropriate knowledge before pronouncing judgements. It must also own the responsibility of dealing adequately through legal means with those who violate the rights of others by behaving irresponsibly.

Ms. Manimala expressed the feeling of the house when she pointed out very succinctly that what was being asked for was humane relationships based on responsibility and honesty whether they were sexual social relations or any of the other social relationships highlighted by earlier speakers.

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Pradeep Krishnatray, communications analyst who teaches at the MUDRA Institute for Communications, Ahmedabad and is Director of CREED (Centre for Research and Education, Hyderabad) spoke briefly about the responsibility of the communicators dealing with diverse forms of mass communication in building attitudes and biases. For the stigma related to a disease like AIDS, he said that we need to understand and be conscious of the conditions under which it arises, to recognise the consequences of the stigma and the possibility of communication messages promoting it, so that the communicators do their work with a greater sense of social responsibility. He then spoke of the alternate possibility – of communications taking on the added social responsibility, especially in the situation that had now been created, of helping to ‘destigmatise’ HIV/AIDS.

He pointed to a larger notion of ‘communication’ where social processes convey messages with stronger impact than the IEC packages – e.g. the assertiveness of HIV positive persons and collective struggles for rights of affected persons on one hand, and training/skill acquisition through camps etc. for professionals on the other, could have greater impact on people’s attitudes and decision-making.

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Dr. Roy Laifungbam, physician and member of CORE (Centre for Organisation, Research & Education, Indigenous People’s Centre for Policy and Human Rights in the North-East, Manipur, Imphal and Guwahati), spoke from his experience of research and control activities for HIV/AIDS in Manipur. He pointed to the need for accountability of the researchers to the local community. The WHO, ICMR and other organisations had undertaken several data collection exercises in the North-eastern region in the last 10 years but it had not been made public and no one knew what had happened to all the data.

Also, stigma and discrimination had got promoted through the approach of AIDS control activities especially with drug users, a group already stigmatised. So there was need to develop mechanisms of social accountability at all levels.

He also proposed that traditional culture should be appropriately incorporated in the response to HIV/AIDS. He had observed that positive traditional norms were under threat in Manipur because of AIDS, e.g. the traditional rituals for expressing kin and community support to the bereaved were not being performed in case of death of PLWHAs, weakening social support systems and community ties. Ana, who also has long experience of working in the area, supplemented this by pointing to the larger context where the prolonged social violence in the region had in any case led to insecurities and suspension of traditional norms with the consequent rise of incest, rape, child abuse, child prostitution etc.

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Finally Mr. Shibesh Regmi, Country Director, ActionAid Nepal, laid out very comprehensively the range of issues to be tackled for developing an appropriate strategy for AIDS control in South Asia. Central to his presentation was the role of civil society, NGOs, International-NGOs and media in the process of formulating and monitoring the response to HIV/AIDS. He emphasised the necessity of focusing on the needs and concerns of HIV positive persons, especially in systemic responses such as of the legal system. Besides the issues of provision of good quality services for STIs (sexually transmitted infections), promotion of condom use, VCTCs (voluntary counseling & testing centers), harm reduction mechanisms etc., he emphasised the need for the media to point out the role of the state in ensuring rights of HIV positive persons. According to him, the media must generate a positive environment with raising of awareness among policy-makers of needs and concerns of affected groups. He re-iterated the urgency of decreasing the stigma through community level action and building the capacities of vulnerable groups through collectivisation, using leaders and celebrities.

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The workshop wound up with a recapitulation of all the strategies suggested by the participants. The common thread running through all the presentations and discussions was recognition of the limitations of the prevailing approaches to AIDS control, and to overcome these identifying concrete forms of a humane, rights based, context specific approach that generated an environment of Social Responsibility at all levels. Issues highlighted were:

i)  The State/Public health system’s responsibility to ensure health care for all health problems, including HIV/AIDS.

ii) Civil society/NGOs/academics/researchers must recognise that their primary responsibility and accountability is towards the community. Only then can their objectives be met. Often, wittingly or unwittingly, the responsibility/accountability is to the international agencies and their agendas.

iii) A responsible legal system must address the gender perspective and be gender-sensitive as it evolves legal provisions for HIV/AIDS. This requires that:-

•  grey areas must be addressed with a humanist approach.

•  there should be legal provisions for information about HIV status to the sexual partners.

iv) Community responsibility – Providing social support to members who are ill, whether AIDS or those affected by any other, with an acceptance of pluralism in behaviours, including sexual behaviours.

Some possible directions for immediate action were indicated in terms of :

•   A social audit of the AIDS control efforts including role of the national programme, NGOs and health care services.