Regaining the Ground,Reclaiming the Network – A Bottom-up Response to HIV


India’s responses to HIV/AIDS through the national AIDS Programme have been widely acclaimed as the most successful public health intervention in its history since the Independence. From 1992 onwards we have witnessed a concerted effort in all fronts to tackle the AIDS crisis in a radical manner by a participatory framing of health discourse and practice. An effective and active cocktail of multiple factors have involved in the nationalist response to prevent and control HIV/AIDS in India. The prospective strategy planning and implementation of the four-phased interventionist model is based on a top down structure. NACO as a centralized agency at the top with regard to policy formulation and at the base on the implementation ground a decentralized grass root approach have been adopted. And as a result, a dynamic multi-stake holder response have ensued involving non-governmental and community organizations. And in the last two decades, that set the momentum going on vibrantly, to set the standards in bringing down the new infections by 66% since 2000, against a global average of 35% (NACO 2015, p. 5; NACO 2017, p. 340).

In No Man’s Land Again

The golden past seemed to be almost passed off now. Between 2010 and 2017, new infections declined by 27 per cent and AIDS-related deaths more than halved, falling by 56 per cent. However, in 2017, new infections increased to 88,000 from 80,000 and AIDS-related deaths increased to 69,000 from 62, 0002. The recent reported events of stigma and discrimination from the public and the incidents of medical negligence from the healthcare sector have forced us to rethink about the current scenario of HIV/AIDS regarding the efficacy of our programmes. What needed to be done is to reorient our priorities of action and strategy according to the changing times. Nowadays the momentum has been backsliding a lot and a complacency of silence and disinterest set in. What we have achieved so far would be receding to the margins and the network has been broken; the people living with HIV having once again dispersed to the no man’s land of isolation and oblivion.

Shifting Towards the Present

The four phases of NACP have actually in effect never been construed as isolated time bound programmes with an impromptu beginning and end in a stipulated time-frame, but could be conceived as a continuous whole overlapping the boundaries and evolving over time in tune with the ever shifting demands of the present. A never ending process of communicative action, awareness and campaign should be a must across the board as long as the disease continues as incurable or until the vaccine would develop in the future. Creating public awareness about HIV to stimulate civil society response was one of the prime priorities of NACP I. But that campaign has been abruptly defunct today and the new generation is out of touch with the information based pedagogy and since their awareness level is too low now. The situation is grave enough as it not only halts the strategy of preventing new infections but also fueling stigma and discrimination to a great extent. Given the complexity of HIV/AIDS, to keep active and alive the information based pedagogy in the mainstream, if anything, is central to the heart of any meaningful and right-based HIV programme. HIV has driven to underground now; however, it doesn’t mean that the disease is not there.

The four phases of interventionist mode should be re-framed as an inter-penetrative or mutually inclusive movement, instead of cut out into a discontinuity, where the end of one phase would naturally mark the beginning of another phase. ‘Know AIDS for No AIDS’ campaign of the first phase is indissolubly interlinked with the second phase initiative of behavioral change. And that would naturally lead to the priority of third phase prevention efforts. The fourth phase is a logical outcome of previous experiences that has shifted the focus to a decentralized approach. The last but the least is never ending here, The NACO report of 1999-2000 confessed the fact like this: “… it is not possible to access them (socially and economically marginalized people) through conventional government services. NGOs, Community Based Organizations and other appropriate agencies are able to reach out to these populations more effectively” (NACO 2000, p. 58).

The Message from the Base

At this juncture what we have needed is a decentralized bottom-up approach and forms of participation in a sustained manner rather than a rigid and coercive linearity of governmentality in a top down mode.  The work Indian Network for People Living HIV (INP+) had done in its heydays at grass root level as a bottom-up participatory network of PLHIV across the country is still relevant, and it is an ideal model to emulate in today’s nondescript situations. To penetrate and accessing the everyday living of the ground level, it has worked through its decentralized autonomous district level networks. Here the leadership means participatory formations that emerge organically from within the PLHIV community itself, and that bottom-up approach would empower the subjects to reclaim their agency through organizing, staying united and voicing their concerns.

The most energizing activities in many strategies and campaigns for HIV prevention involves using the creativity and energy of people who are most affected by the epidemic. The messages and strategies developed by them are most crucial to motivate a behavioral change. The proponents of new culture-centered approach to health communication have overtly pinpointed the importance of localized ownership. Owning the processes that influence their community’s well-being is central to this approach. Local participation and ownership participation would get a deliberate meaning through a sense of local control over the communicative processes of decision-making and problem solving. Awareness about one’s living context is a defining factor here and the process of identifying local problems and configuring solutions are come up from the base itself, not from the super structure. Over and above, that makes sense of regaining the ground and meaning in reclaiming the network.

Shibu Shanmughom is a freelance journalist based in Chennai, writes in English and Malayalam. He is the author of ‘Standing Right Next to You: Lives of HIV Positive People’ (jointly published by Concern World Wide India and INP+, Chennai-2009.


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