Executive Summary

The public health response to the problem of AIDS had started in India in 1985 even before there was any evidence of HIV/AIDS in the country or initiation of the WHO’s Global Programme on AIDS. It attained significant status with the involvement of the World Bank in two phases over the 1990s. There was an even greater civil society response with the involvement of the media and the NGOs. The fact that AIDS is not merely a medical problem was acknowledged and several public health and societal agencies were involved on a large scale. Yet there have been several limitations in the AIDS control efforts, as the programme initiators themselves acknowledge. This workshop was one of the several exercises being undertaken to try to arrive at a better understanding of the numerous complex issues that have worked as deterrents to appropriate AIDS control efforts being undertaken by various agencies in the country.

The workshop was structured with the understanding that diverse issues are inter-linked and the strategies for AIDS control must address all together for any significant and sustained impact. Further, it was thought that strengthening the efforts requires not only better implementation but a re-thinking on their conceptual basis. No amount of funds, whether from a ‘Global Fund’ or otherwise, can lead to an effective response to the problem if significant rethinking is not done. Issues that have been central to discussions on AIDS control, such as medical care and psycho-social support, legal and human rights, issues of WIP/sex workers, sexual behaviours and IEC/communications were analysed. These could be viewed as discrete issues of specific rights of individuals/groups and of instituting specific measures to ensure them. Alternatively they could be viewed as micro-level dimensions embedded in a wider complex of factors at a societal/macro level. It was thought that both are valid and important perspectives but that a large part of the limitations in the response to HIV/AIDS in India is because it focuses primarily on the micro level interventions, ignoring societal concerns. The need was felt for a dialogue across perspectives so as to identify the links between micro and macro levels in order to strengthen the efforts for minimising suffering due to HIV/AIDS and due to the social response to it, including that generated by the programme.

Globalisation was considered the current over-arching macro phenomenon most significantly influencing social, economic, political and cultural aspects relevant for AIDS. Therefore the deliberations started with a presentation on its implications for public health and AIDS. The three days were then devoted to one specific theme each – medical care and support to People Living With HIV/AIDS (PLWHAs) on day 1, Women In Prostitution (WIP) and sexuality on day 2 and communications on day 3. As a ‘dialogue’, i.e. an exercise at listening to other perspectives while frankly articulating ones own, it was not envisaged that some final consensus on recommendations would necessarily be reached. But it was hoped that each perspective would be enriched by insights from others.

If one were to summarise the general sense emerging from all the discussions, ‘an environment of Social Responsibility together with Pluralism’ can be discerned as the macro concepts which are crucial for AIDS prevention and care. These formed a running thread through the range of issues addressed, whether it was the responsibility of:

• the state towards the wellbeing of its citizens,

• the medical system and professionals towards patients,

• the public health system towards society for providing epidemiologically rational and socially contextualised democratic programmes,

• the media communicators towards socialization processes, and

• partners in interpersonal relationships including sexual relationships.

‘Responsible sexuality’ can be envisaged only when social responsibility is also evident in other spheres. The challenge is to develop an environment of social responsibility without a constriction of creativity, diversity or individual freedom and wellbeing. Salient issues from each session summarised below illustrate the multiple forms in which these concepts are relevant for AIDS control in the contemporary Indian context.

The social, economic, political and cultural context was analysed in relation to the characteristics of globalisation and its impact. Globalisation was viewed in terms of a process begun 250 years ago of a one-way flow of legitimacy and power, knowledge and ideas. This has led to economic impoverishment, lack of self-confidence, and the abdication of the responsibility of thinking for ourselves to create our own destiny. The present phase of globalisation had aggravated this process over the ’80s and ’90s. Characteristics of the current globalisation relevant for public health include:

i) Reduced space for independent State planning and intervention.

ii) Ascendancy of the Market and increased privatization.

iii) Cut back in essential expenditures on employment generation, food security, health and education. Consequently it has worsened conditions of disparity and there is further marginalisation of the already marginalised.

iv) The Market was posed as a ‘value-less’, profit-oriented system that has been reined in by social values in all societies over human history. When the Market becomes the basis for setting of societal values, ‘consumption’ becomes the ‘mantra’. Issues of social justice and needs of the poor give way to the greed of the better off in social priorities. Self-restraint is negated and commodification is promoted in all spheres of human life.

v) It was seen that with these attributes of the current process of globalisation, disparities increase, individual aspirations, frustrations and insecurities rise, social conflicts deepen and differentiating identities harden leading to greater intolerance of difference, communal violence, and violence against women. Such situations are fertile ground for ill health in general, and for the spread of HIV. They also enhance intolerance of ‘deviance’ and thereby violation of human rights of HIV/AIDS affected groups and individuals.

vi) In the area of knowledge generation and policy making, the methodology for analysis has been increasingly fragmented and each problem is viewed as independent of the larger context. Further individualised aspirations discourage collective thinking for the common good. So there is little debate on public policy positions, creating an anti-democratic environment and leaving the space open for north-led policies.

However it was pointed out during subsequent discussions that all this societal upheaval, the breaking down of existing social structures and questioning of existing values and moral positions can also have positive outcomes in terms of loosening coercive social strangleholds and generating new support systems. That is where conscious choices have to be made, spaces found, so that negative consequences are minimised and positive ones optimised. Therefore ‘dialogue’ on related societal concerns becomes essential.

AIDS control efforts seem to be designed without recognising these links from macro to micro processes. On the one hand awareness of the problem has been created along with a discourse on human rights and a range of activities that provide succour to individuals affected by HIV/AIDS have been initiated. On the other hand northcentric, decontextualised approaches which tend to support markets, individual consumption, and isolation of problems rather than social responsibility and comprehensive perspectives dominate. Rethinking and dialogue seem essential to bridge this schism.

Medical professionals providing AIDS care, public health specialists, members of the Network of PLWHAs and AIDS activists raised issues which included: -

i) The low priority given to provision of medical care and support in the AIDS activities until recently. Treatment was isolated from prevention rather than viewed as an integral part of it.

ii) The importance of factual information being given to people, including to the PLWHAs as part of counseling and to health personnel was emphasised. A person living with HIV/AIDS highlighted how her life had been disrupted because of lack of full and correct information about the infection and its implications.

iii) The importance of a relationship of trust between the health care providers and the PLWHAs was emphasised The significance of the widely accepted dictums of AIDS care – consent taking and confidentiality – were questioned as they were considered meaningless in the absence of trustworthy, responsible service providers by the member of a network of PLWHAs.

iv) Responsibility of the medical system in transmission of HIV was also examined. The strategy of disposable equipment was questioned on grounds of public health rationality. Practice of universal precautions was posed as a better option. However this was contested by medical professionals working in tertiary hospitals.

v) Similarly the issue of appropriate technology for diagnosis and treatment of PLWHAs was highlighted. While cost was an issue of concern, it was also the rationality of use in terms of access in the given social context and limitations of the delivery system as well as the possible iatrogenesis and side-effects which were to be considered.

vi) Concrete experience of developing and using a regimen of diagnostic tests, prognostic tests and ways of minimising / delaying conversion from HIV positivity to manifest AIDS, that could be effective in low resource settings was presented. This method of managing HIV/AIDS in clinical settings was in sharp contrast to the public discourse focused on CD4 counts and Anti RetroViral drugs.

vii) The idea of these contextually rational approaches to technology and ways of managing HIV/AIDS was strongly contested by some care providers and AIDS activists who viewed these as options compromising on quality and effectiveness.

viii) It was clarified that ARVs are not a part of the national programme, except for prevention of mother to child transmission and as preventive for health care providers being exposed to HIV as an occupational hazard.

ix) The importance of general health services that were effective, accessible and affordable was emphasised by all, because of – a) the need to treat common opportunistic infections, b) the need to minimise stigma by not isolating PLWHAs, c) the importance of dealing with AIDS as a part of the larger gamut of health problems of any area, d) the present approach leading to all those providers outside ‘the progamme’ viewing PLWHAs as the responsibility of the programme, STD clinics, or designated professionals, not their own. Isolating the problem of AIDS from other health problems limits the number of providers dealing responsibly with medical care of PLWHAs. This issue of a comprehensive delivery system for provision of medical care and support continued in the next session.

x) Also emphasised was the issue of social support for PLWHAs through the legal entitlements of PLWHAs. A review of cases highlighted the need for better-informed and non-prejudiced judges.

xi) The issue of discrimination by families in accessing care for women with HIV infection was highlighted, emphasising upon the need for greater efforts at social sensitization.

Suffering due to HIV/AIDS was visualised not only as a result of the physical impact of HIV on the body but also as being caused by the planned interventions to control it, such as:-

• The isolated highlighting of HIV/AIDS as a special disease, use of fear as a tool and identification of ‘high risk groups’, all adding to the associated stigma.

• The blood banking policy that did not take ground realities into account and was creating dilemmas for patients and practitioners.

• The pricing of condoms even for the women in prostitution while they were distributed free in the family planning programme.

• Compartmentalisation of problems and fragmentation of the health service system were viewed as the bane of our health services. The response to HIV/AIDS was adding to this even further.

The session brought out a general consensus on the necessity of accessible, effective, safe and humane general health services to ensure provision of appropriate medical care and support to PLWHAs. What was debated was the issue of what is ‘quality’ medical care and on what criteria should standards be set to decide the use of technologies of diagnosis and treatment. The complexity of issues while setting standards in a situation of wide socio-economic disparities and a health service system comprising of a mix of public and private sector came sharply to the fore. The responsibility of ensuring access and effectiveness of medical services was posed as one that had to be shared by medical professionals who are leaders in both the private and public sectors. Some highlights of the discussions were as follows:

i) The dismal state of much of the public sector health institutions was seen as a major challenge to diagnosis and provision of care to PLWHAs. The necessity of improving the functioning of the public sector institutions was repeatedly emphasised.

ii) A lively debate on the quality of care by the public and private sectors brought out the issue of what criteria should be used to define ‘quality’ of services. It was pointed out that the diversity within the private sector was obscured when we spoke of its ‘good quality’ illustrated by institutions such as the Apollo hospitals etc. The large number of hospitals, nursing homes, private clinics and RMPs reveal a wide range of ‘quality’. Further, even the best of private sector ‘quality’ was questioned vis-a-vis the public sector in terms of its coverage. Their performance could be comparable only if the numbers and class of patients accessing the public and private sector hospitals were similar.

iii) Concrete measures for improving public sector management and for improving the quality of medical services in both sectors were discussed and need for further discussion was felt.

iv) Drawbacks of the National AIDS Control Programme were seen as those that have been recognised over the 60s, 70s and 80s for all vertical programmes such as time-bound, targeted activities which change frequently and the campaign mode which distract from the basic task of providing a strong base of trustworthy health services.

v) The lack of any debate on programmes and their content was viewed as a major lacuna of the planning process which did not draw upon the diversity of views and expertise within the country, thereby remaining dependant on decontextualised, international models.

vi) The conditions in different parts of the country were cited to highlight the fact that planning couldn’t be done on the basis of the experience and conditions of tertiary hospitals of either the public or private sector. Far-flung small towns and villages such as those in Chhattisgarh and Bihar have to be kept in mind.

vii) Also pointed out was that better administrative management will not be enough, incorporating the patient’s/ community’s perspective at all levels is essential to suit the programmes to their context and priorities. This is necessary not only for AIDS but for all problems (as illustrated by the papers on failures of antenatal care) and is possible only by rethinking the medical system’s approach to the patient and to health.

The discussion points to the need for further dialogue on the means to improving quality of care within the health service system as a whole as its contribution is central to the prevention of HIV/AIDS transmission, provision of medical care to PLWHAs and generating positive social responses.

There was a lot of heated discussion on this theme, on which participants, with widely varying perspectives interacted on complex issues. It brought about a perceptible movement of various participants from their previous positions.

A continuum was seen between the WIP/CSWs and the ‘general’ women. There are women who are living in families who come into the trade to support them. There are also women who are single, and without a family, and therefore into the trade. And there is also a whole range of categories within this profession, from those in brothels for the poor to the middle class call-girl. So the discussion raised the questions:

i) How do the issues of women in the family and the women in prostitution link up and become one issue. How do these groups reach out to the public and get mainstreamed?

ii) Also brought up was the issue of dignity, and whether dignity comes with recognition of prostitution/sex work as an occupation, or does it further stigmatise?

iii) The organisation of WIP that empowered them was viewed by many as positive. However, another question was that, if viewed as a trade union, how would organisations of WIP respond to decrease in clients, which should occur if Behaviour Change Communication is done effectively?

iv) The distinction between the institution of prostitution and the WIP became clearer.

v) There was a universal agreement that legalisation of prostitution was not desirable. The reasons being different across the spectrum of perspectives. Despite a dissenting voice, there was also a general agreement on the need for decriminalisation of WIP (but not of the nexus which coerced women into prostitution). Disagreements persisted on how to view commercial sex – as ‘a service’ provided by a legitimate trade or as justification of an age-old social evil; as a servicing of men by women along patriarchal lines or as a form of livelihood which denies the WIP human dignity and the right to their own sexuality.

vi) There was a general agreement that prostitution was to be fought along with all other forms of exploitation. The disagreement was on whether ‘mainstreaming’ of WIP was the best strategy to do so, or to view prostitution as an unacceptable institution even while making efforts to improve the quality of life of the WIP, and to tackle conditions of poverty, unemployment, and violence against women.

This intense discussion constantly led towards issues of male sexuality and female disempowerment, which linked it directly to the larger context of gender relationships and sexual cultures, the theme of the next session.

Sexuality was posed by the initiators of the session as an issue with multiple dimensions ranging from desire to power, from violence to intimate eroticism. It was contended that it was a subject over-invested with meanings. Also that major changes are occurring in this sphere at this point of time in the Indian context.

i) Against the backdrop of oppressive gender relationships and violence against women, it was argued that the dominant perspective of the AIDS control efforts privileged male sexuality. Thereby the strategies demonstrated the dominant patriarchal, upper class bias.

ii) Issues of single women and their sexuality were posed as those that concern a significant section but having never been addressed. Multiple types of relationships of MSMs and their multiple identities highlighted the pluralistic forms of sexuality. It was considered important to understand the complexity of ‘sexual cultures’ and not merely focus on ‘sexual behaviours’.

iii) It was pointed out that promoting ‘responsible sexuality’ as a societal phenomenon requires a re-instating of the ‘conjugal fantasy’. Cultures must allow spaces for people talking about their own fantasies so that they can explore their own sexuality and recognise ‘perversions’ within themselves, not only view them in the ‘deviants’ who can then be targeted. Only through such a churning could one reach the ‘conjugal fantasy’ for liberative and responsible relationships.

iv) In AIDS discourse marriage is being posed as the most common risk factor for HIV transmission among women in India. While it appears so in micro-level analysis, this statement misses out the macro-level analysis of the role of marriage in sexual culture and its epidemiological implications, where it is a protective cultural attribute. It was pointed out that the institution of marriage, and sexuality within it, has somehow not been adequately addressed even by the women’s movement.

The discussions highlighted questions needing further exploration – the nature of current changes within the institution of ‘marriage’ and gender relationships being extremely important to understand. However, also voiced was the concern that these issues should probably not be addressed through the ambit of AIDS control but as social concerns in their own right, as the role of state agencies may not be the best thing in such issues. However sensitivity to these issues is necessary among AIDS control planners, communicators, NGOs and activists.

The discussion in this session was focused on the nature of lay press reporting on HIV/AIDS as well as on specific AIDS related communication strategies. It highlighted several debates:-

i) Regarding the basis for evaluation of media messages – That communication messages must be judged upon their internal validity i.e. on their effectiveness in communicating the desired message to the target audience. This was contested by arguments that it was just as important to analyse the external validity or ‘unintended impact’, i.e. to assess impact in terms of messages conveyed other than the ones meant to be communicated, and to those within and outside the target group.

ii) About the role of the mass media in such a disease control programme – there was a realization among officials of the little potential for bringing about the desired behaviour change through IEC, but IEC was still considered important by programme formulators and implementers "for creating a conducive environment for other policy initiatives and strategies".

iii) The politics of ‘development’ as an externally driven activity with no local roots was found to underlie AIDS communication efforts, as illustrated by an analysis of IEC efforts in Nepal. The biomedical language and cultural overlay was alien to all – the eager-for-information youth, the unconvinced middle class, and the uncomfortable NGO and health workers who were the implementers.

iv) Thus some questions posed were – Should the AIDS communication have a ‘development’ or an ‘empowerment’ thrust? Should the focus and form be bio-medical or socio-cultural?

v) While the role of IEC and media in creating a negative image of the disease and thereby the stigma was highlighted, also pointed out was the drawback of current positive messages. Communication of ‘positive messages’ (which is meant to create positive images of the disease, give hope to the PLWHAs and destigmatise the disease) could also serve to create false hopes in medical technologies and cover-up the dismal social context that increases vulnerabilities.

vi) The re-inforcing of stereotypes through AIDS messages, e.g., of gender roles – of the macho-male, of women as passive spreaders and men as active victims to be protected, was considered an undesirable and counter productive element of many AIDS messages.

vii) Several ways of communicating about sex and sexuality within the available cultural images in any specific context were pointed out with concrete illustrations.

i) to give facts, in as complete a form as possible and with context specific information, as distinct from merely giving opinions.

ii) quality assessment of media messages must include consideration of ‘external validity’ along with their ‘internal validity.’

iii) IEC should include information about medical transmission and protection from it, in addition to sexual transmission.

iv) The use of existing means of ‘sex education’ in the socio-cultured milieu and everyday life of people; existing symbols having a very powerful role.

The final session was a round up of all the issues and significant points for consideration as presented by four senior academics and supplemented further by all participants. Since the project director of NACO participated in this session he responded to many of the issues raised and presented the official perspective.

Some issues raised were the following: -

i) Priorities within the programme e.g., relegating medical care and support to the background in a narrow view of prevention, allowed ignoring of this basic responsibility.

ii) Decentralisation which is only ‘delegation of responsibility for implementation’ and not real movement of decision-making to peripheral levels.

iii) International commitments such as made by Government of India as a signatory to the UNGASS Declaration were not being implemented. How does the Government of India plan to honour its responsibility there?

iv) The ignoring of experience and knowledge within the country and depending upon international advice and models resulting in inappropriate approaches for local context.

v) Abdicating the responsibility of a scientific international and national community, the public health establishment gave out ill informed/ill informing messages to the public, creating a response of fear and stigma.

It was pointed out that introspection is needed at all levels – among the NGOs and activist groups, the public health persons, policy makers and administrators and the marginalised sections who are most vulnerable – keeping the larger context of globalisation and its impact on public health in mind. Several issues raised through the three days demonstrated the negation of ‘social responsibility’ and ‘pluralism’ through the macro environment which was, unfortunately, also being contributed to by the thrust of the AIDS control efforts.

The recent standing up of the NACO against international agencies on the basis of epidemiological and public health rationality was lauded. It was hoped that more contextualised strategies would now be adopted. For this it was clear that this problem requires open-endedness in thought as well as a sense of dilemma rather than clear-cut solutions, because not just HIV/AIDS but the whole changed context in which public health services are finding themselves today after liberalisation and globalisation, require a lot of rethinking.