Tuesday, June 9, 2009

Barriers to inclusion for those living with HIV, and non-discriminatory, or inclusion strategies

Dr. E. Mohamed Rafique, UNAIDS, India


Introduction to Denial, Stigma and Discrimination (DSD) with Definitions
Provides definitions of DSD, its type, magnitude, and wide spectrum in relation to various diseases and HIV

The HIV epidemic has stirred up a wide range of reactions from individuals, communities, and nations, ranging from sympathy and caring, to silence, denial, fear, anger, and even violence. (Malcolm et al. 1998). Stigma is the most important factor that determines the type and magnitude of the barriers that People Living with HIV (PLHIV) have to overcome in their lawful quest for living with dignity and rights.

Stigma is an unwanted or shameful attribute that a person has, which reduces that individual’s status in the eyes of society. Stigma can result from a precise trait, such as a physical deformity, disability or a disease. In addition, Stigma can develop from negative attitudes toward the behavior of a group, such as homosexuals or prostitutes. According to Goffman, stigmatization is the societal labeling of an individual or group as different or deviant. Many authors divide stigma into felt or perceived stigma and enacted stigma (Jacoby 1994; Malcolm et al. 1998; Scrambler 1998; Scrambler and Hopkins 1986).

Felt stigma refers to real or imagined fear of societal attitudes and potential discrimination arising from a particular undesirable attribute, disease, such as HIV, or association with a particular group. For example, an individual may deny his or her risk of HIV, refuse to use condoms, or refuse to disclose HIV status for fear of the possible negative reactions of family, friends, and community.

Enacted stigma, on the other hand, refers to the real experience of discrimination. For example, the disclosure of an individual's HIV-positive status could lead to loss of a job, health benefits, or social ostracism. Therefore, felt stigma can be seen as a survival strategy to limit the occurrence of enacted stigma, such as when people deny their risk of infection or fail to disclose HIV status in order to avoid being ostracized.

Individuals who hold negative attitudes or who enact stigmatizing or discriminatory behavior have been referred to by some as the perpetrators of DSD, whereas PLHIV and those affected or associated with HIV are the targets (Herek and Capitanio 1998).

DSD in India
Gives a synopsis of DSD in India and how one could derive the inclusion strategies by knowledge sharing

The ubiquity of stigma in India and its persistence even in the states where HIV awareness and prevalence is high makes it an exceptionally imperative yet difficult area of research. One would expect increased sensitivity to PLHIV and therefore stigma to decrease with increased awareness and visibility of HIV. However, studies including the Integrated Behavioral and Biological Assessment (IBBA) and its previous version of Behaviour Sentinel Surveillance (BSS) in India, have repeatedly shown that increased awareness necessarily does not produce an increased sensitivity. As a result, the desired or expected behaviour change in the form of reduced discrimination from society has not occurred.

To help understand well the extent and the spectrum of felt stigma, an organization working with Men who have Sex with Men (MSM) used the model of a “Stigma Onion”. Accordingly, there are as many layers of stigma as there are peels in a onion. Moreover, each peel had to be addressed separately. As a result, the levels of stigma in this model of the onion are that of being a homosexual, which can be compounded by being married and having to hide it, or being a cross dresser; complicated by stigma based on economic status, class and caste; in addition to being a male or transgender sex worker; and finally being a PLHIV. Members also felt that awareness campaigns projecting the concept of the “innocent victim” for some PLHIV invariably stigmatized the others.

The fact remains that stigma due to HIV introduces enormous barriers to public health programs. The continuum of enacted stigma is seen from denial and silence, to problems associated with disclosure, health seeking behavior, and even up to the communal violence and breakdown of communication that ends life of those living with HIV. Therefore, it is the urgent responsibility of the Indian public health community to use more creativity in designing HIV stigma interventions and to implement them on a significant scale.

The time to record the history of DSD of PLHIV in India is now. More than two decades into the infection, it is the time when treatment and access is better than it was ever before. Consequently more PLHIV in India are coming out to access services. However, India being a country of a billion people, with varying degree of awareness of the epidemic and sensitivity to PLHIV, the likelihood of such a generalized statement of reduced stigma, being proved wrong rises up often. Once the frequency with such incidents of stigma is recorded and its reduced trends over time noted, only then can a researcher state with evidence that in India there are less barriers to inclusion for PLHIV. A somewhat similar method was adopted by the Action Group of the AIDS Community of Solution Exchange in their quest for solutions to the present status of DSD in our country.

Outline of Solution Exchange and its Communities of Practice
Solution Exchange is a unique initiative of the United Nations in India, which builds communities of development practitioners working in a common area of interest and passion. In these communities, people working in development learn about each other’s successes and mistakes in an atmosphere of trust and collaboration, thereby saving time and resources by not reinventing the development wheel. Methods for knowledge sharing include email based discussions on specific queries, documents, and issues. Occasional face-to face meetings are also done. The ‘Action Group’ modality facilitates collaborative group work between different agencies and individuals on ideas with strategic importance.

From Discussion to Knowledge and beyond
Clarifies the role of Solution Exchange AIDS Community, in synthesizing knowledge from the generated discussions on DSD, and through the Action Groups translate this knowledge into pilot inclusion initiatives

An overwhelming response, in December 2005, to the query on Stigma and Discrimination from the AIDS Community mainly from the Positive Networks in India showed there was a large wealth of undocumented work in this vital area in the fight against HIV. Further, on the specific suggestion from a PLHIV to translate the discussion and knowledge of the Community into Action against DSD, an Action Group Meeting (AGM) was convened in March 2006. Specifically, this AGM discussed on how best to collect all the un-heard work in the area of DSD in India. In addition, the method to ferret out the non-discriminatory, or inclusion strategies, that members have used to respond to DSD would be documented. Finally, these inclusion strategies would be drawn out to produce a proposal for the country to tackle its DSD issues at the National level.

AGM Recommendations:
  • To form a group named AAROHII.
  • AAROHII would document all the work on stigma and discrimination and update it periodically
  • The need for recognition of AAROHII and thereby credibility as the key national partnership addressing stigma and discrimination.
  • A secretariat for AAROHI to give it sustainability and a long term prospect was proposed as this would effectively address issues of stigma at the national level over time.

Mission:
Addressing Stigma and Discrimination through Action Advocacy Research on HIV and AIDS in India
Vision:
India is the least stigmatizing and discriminating country in the world by 2015

Objectives:
  1. To expand the base of people and organizations to address Stigma and Discrimination.
  2. To influence policy and programmes to reduce Stigma and Discrimination.
  3. To facilitate, support and strengthen responses that address Stigma and Discrimination.
  4. To develop and strengthen the evidence base for action and advocacy.
  5. To recognize new and innovative approaches that has reduced Stigma and Discrimination.
  6. To organize regional and national level consultation meetings for sharing and learning.

Creation of AAROHII
Details why and who created AAROHII, its unifying force, and its advantageous outcome that is greater than the sum of its parts

In order to document the Indian response to DSD, AGM members suggested forming a group called AAROHII, which is the acronym for Action Advocacy Research on HIV in India. AAROHII in Hindi means the ‘ascending scale in music’ or ‘rising, climbing upwards’. The AGM concluded that for AAROHII to acquire credibility at the national level it should gather suitable recognition. The Red Ribbon Award could be one of the methods to get recognition. In order to effectively address issues of Stigma AAROHII has to function on a long term and sustainable basis. Solution Exchange would be the medium through which AAROHII would connect to other members in the AIDS Community.

The AAROHII Community is an organization of diverse community-based, non-governmental and governmental organizations who work in synergy to realize their shared vision of an effective, inclusive and rights-based response to the HIV epidemic in India. AAROHII considers itself a Community-based organization in the sense that these like-minded organizations have come together as a “community” – a group of dedicated people with a common passion and goal. AAROHII came into being to formalize a relationship that has been in existence since the beginning of the response to HIV in India. The creation of a more formal relationship enables the members to maximize their impact individually and collectively even in their act of preparing a proposal of inclusion strategies.

The AAROHII Proposal
Contains the strategies devised that will achieve the six main objectives of AAROHII

Strategies to attain AAROHII Objectives:

1. To expand the base of people and organizations to address Stigma and Discrimination
:
Members of AAROHII are those Indians who have the spark of enthusiasm to address Stigma and Discrimination. It is this common "spark" that brings the members of AAROHII together. Specifically, the members are all working towards one goal in particular - they are the agents for change in the way India is viewing PLHIV. This group of organizations serves as catalysts and facilitators for motivating other organizations to act. Most importantly, they consider themselves to be a "family", in that they are all working together to attain a common vision. Therefore, in this sense, all that AAROHII has done has been to formalize a relationship that has been in existence since the beginning. Creating a more formal relationship enabled them to have even more of an impact individually and collectively.

A noteworthy strength of AAROHII members is their effort to address Stigma and Discrimination that is completed not by one organization but as a collaborative effort with different partners. The highlight of "community" or “family” as like-minded people and organizations coming together to achieve something no one of them could do alone was the innovative feature of the AAROHII effort.

In order to increase the base that would effectively cover the work done to address Stigma and Discrimination, Consultants were engaged. These Consultants ferreted out members from all levels, based on their work, explained to them the AAROHII concepts and persuaded them to join AAROHII. Membership was free.

The Indian Network of Positives, with their State and District Level Networks is a body which has the highest number of members who have joined AAROHII. A strong Greater Involvement of People with HIV and AIDS (GIPA) is ensured by the Representatives of the various Positive Networks being the key voice in the AAROHII consultations and meetings. Around 50% of the AGM were PLHIV.

2. To influence policy and programmes to reduce Stigma and Discrimination.
AAROHII by strength and credibility of its members strove to be the final word on policy and programmes that reduce Stigma and Discrimination in India. A Nomination for the Red Ribbon Award 2006 helped to rally a sizable number of members, as well as increase the self-worthiness of AAROHII members. In order to influence Stigma and Discrimination policies AAROHII has a technically sound think tank, backed by a good documentation of the work already done in this area in India. The members representing the think tank are recognized experts on DSD. Hence what emerged was a small, dynamic and flexible group of experts who would come together each time to figure out the best way for AAROHII to deal with the numerous and varying issues of Stigma or Discrimination.

AAROHII’s flexibility in constituting Action Groups or drawing up its constitution, which is based on sound principles, clear vision and an express mission, was demonstrated in its first brainstorming meeting where members charted its objectives, rather than think-up ways for nominating AAROHII for a global award. Only when it was pointed out that by an award there would be immediate recognition and substantial gains in credibility, did members relent, thereby articulating a steadfastness and preference to address Stigma and Discrimination, than attain glory for itself.

The singular work accomplished by Lawyers Collective in the twin fields of Litigation for Rights as well as in Draft Legislation cannot but be mentioned. How all the members of AAROHII family approached Lawyers Collective for litigation on discrimination and rights issues is in itself a testimony to the success of Lawyers Collective. The Draft Legislation on HIV will in the next session of Parliament become law creating a landmark in the DSD history of India.

3. To facilitate, support and strengthen responses that address Stigma and Discrimination.
This is the forte of the AAROHII family concept, which is comprised of members complementing each other in their different skill sets. Thus, there is no competition between the members. In stead seen is a synergy and synchronization, which is so crucial in the Continuum of addressing Stigma and Discrimination. Be it initiating, facilitating, supporting, strengthening the responses in the Continuum by information sharing, knowledge building, documenting, capacity building, ensuring behaviour, practice and attitude change in the external environment; AAROHII family members have these instinctive qualities ingrained.

To harmonize the complementing works of the members it was essential to have a system of being able to identify areas that require support and facilitation in the country, detail the kind of support required, decide on who could best deliver it, and facilitate this from AAROHII. Therefore, a central secretariat for AAROHII backed with adequate research, knowledge and contact database handled by obligatory staffing which can then meet these needs and serve as the pivot point of its function, was required. The budget required for this depends on the number of Stigma and Discrimination responses addressed over time.

Information Networks like AIDS-India and Solidarity and Action Against The HIV Infection in India (SAATHII) along with Solution Exchange AIDS Community provided reports of inadequate response. Moreover, the discussions on these networks charted out a rough cut of the response strategy, which the members of the AAROHII think tank could further refine as well as decide who amongst its family members is best equipped to handle the response.

4. To develop and strengthen the evidence base for Action and Advocacy.
This component entails a robust research and documenting support to determine the existing work already done in the country and build to take it further on. It also affords baseline evidence data to compare with those of other countries or regions or develop these if not present in our country.

The documenting work already done by some of the founding members of AAROHII like Tata Institute of Social Sciences (TISS) and SAATHII cannot be overemphasized. Publications on stigma and Discrimination by various UN Agencies and the Positive Networks including the Positive Women’s Network (PWN+) figured in the reckoning. Documentation such as these helped determine the gaps in the response that address Stigma and Discrimination. Based on further information collected an estimate of the action or advocacy response was gauged and lead by the Think Tank of the action group.

5. To recognize new and innovative approaches that has reduced Stigma and Discrimination.
As a spin-off activity from documenting, recognition helped to highlight and reward new and innovative approaches so that AAROHII members could replicate them in suitable circumstances. The collection of information on the responses to Stigma and Discrimination allowed the Think Tank and Action Group to pick the best for the year. A site visit, interviews, case study documenting no doubt allow replication by other members. However, the AAROHII Annual Award (AAA) motivated members to put in their best efforts to orchestrate the AAROHII family’s response. Here the criteria for recognition were the ones already detailed in the Red Ribbon Award Criteria so that AAA could be a prelude to the biennial Red Ribbon Award. Furthermore, themes that are likely to catch the attention of the Red Ribbon award panel can be harvested from the presentations for AAA.

6. To organize regional and national level consultation meetings for sharing and learning.
The Regional and National level consultation helped to update members as well as take stock of what was accomplished by the AAROHII family and what remained to be done. These consultations and meetings provide a platform for members of the AAROHII family to present their success stories and the lessons learnt from the field. In order to streamline this strategy to provide regular feedback to AAROHII activity members envisaged a modest two regional meets and one annual national level consultation every year.

Outcomes of AAROHII
Briefs of the collaborative group work results and achievements of the members classified under ten themes

Initiative description and impact:
Explains how the initiative has had an impact on the community when addressing HIV challenges. Describes the efforts undertaken to prevent new HIV infections, and the efforts undertaken to improve access to care support and treatment for people infected with HIV

The courageous initiatives of AAROHII’s members represent the turning points in India’s response to HIV.

The Government Hospital for Thoracic Medicine (GHTM) was India’s first public health institution to throw its doors open to PLHIV and is an emerging centre of excellence providing care, ART and integrated HIV-TB services to the largest number of PLHIV in India. YRG-CARE, Freedom Foundation, Sahara and others became mini-centers of best practices pioneering seamless prevention, care and impact-reduction services in a milieu which still saw prevention and care as two ends of the HIV service spectrum.

Sampada Gramin Mahila Sanstha (SANGRAM), Society for Welfare of HIV infected People (SHIP) and Indian Community Welfare Organization (ICWO), earned global recognition pioneering community-led initiatives among sex workers by instilling self-respect and concern for personal well-being amongst communities that depended on societal abuse for survival. They initiated the country’s earliest sex worker collectives: Veshya Anyay Mukti Parishad (VAMP), Durbar Mahila Samanwaya Committee (DMSC), Indira Sex Workers Collective and Men Community Development Society for Men having Sex with Men (MSM). The Naz Foundation and the Humsafar Trust successfully established India’s earliest formal networks of people with same sex behaviors.

AAROHII has initiated a non-judgmental, inclusive work culture in the health and development sectors, initiating community ownership and leadership, liberating discussions on sexuality and revealing the true nature of empowerment by affirming that every individual counts.

Community empowerment:
Describes what strategies and initiatives has helped the community to become involved in the response to HIV. Also, explains how the initiative helped marginalized groups to become equally involved in the response to HIV. Moreover, documents how the initiative empowers the community and its marginalized groups to take action.

AAROHII’s many success stories of empowerment spring from the ability of its members to help communities recognize their own strengths. In order to address the various forms of stigma and discrimination AAROHII used a range of practical measures:
  • Livelihood project as a logical outcome that put sex workers on the path to self-empowerment through income generation – SANGRAM, DMSC and VAMP.
  • Develop openness in discussing sexuality issues – Network of MSM-PLHIV of India (NIPASHA+), SAHODARAN, Udaan Trust.
  • Incorporate all stakeholders, particularly family members and medical personnel, in de-stigmatization efforts — Indian Network of Positive People (INP+), Manipur Network of Positive People (MNP+), Bengal Network of Positive People (BNP+), Humsafar.
  • Provide constant counselling to families of HIV positive persons –- INP+, Network of Maharashtra by People Living with HIV (NMP+), Karnataka Network of Positive People (KNP+).
  • Train and sensitize health care workers, and ensure strict vigilance against discrimination at health facilities –- Delhi Network of Positive People (DNP+), Social Wefare Association for Men (SWAM), Tamil Nadu Network of Positive People (TNP+) and PWN+
  • Offer greater visibility to PLHIV by encouraging and assisting positive persons to overcome self stigma and come out in open – NCP+, Heroes Project, INP+, Positive Peoples’ Foundation.
  • Sensitize media professionals –- NMP+, MNP+, Council of People Living with HIV in Kerala (CPK)+
  • Avoiding fear-based messages –- Positive People Goa, Bethesda Youth Welfare Centre, South Asian Foundatin for Human Initiatives (SAFHI), Udaan Trust, TNP+, BNP+,
  • Advocate with Government and decision makers for increasing accessibility to treatment – Lawyers Collective.




Greater involvement and empowerment of PLHIV (GIPA):
Describes how the initiative has involved and empowered People Living with HIV in the community.

AAROHII members have transformed the way India treats PLHIV and made GIPA a national policy. The INP+ and PWN+ lent courageous faces and voices of hope to the Indian response to HIV. They were the shared asset of all members of the AAROHII community, informing policy, program and practice and being empowered in turn.

Passionate advocacy by ‘Positive Speakers Bureaus,’ Michael’s Care Home and Naz Foundation brought in acceptance of the epidemic, spawned positive networks from St.Paul’s Trust in Andhra Pradesh to Social Awareness Service Organization (SASO) in Manipur, improved access to prevention and care and introduced ART into the National AIDS Control Program.



The Tamil Nadu State AIDS Control Society (TNSACS) was the first quasi-governmental agency to put GIPA into practice, involving PLHIV in decision-making and partnering with them in the field to achieve its stated objective of reducing HIV related stigma and discrimination. TANSACS led by example, employing PLHIV in its executive office. It mainstreamed VCT, PPTCT and ART into its public health system partnering with a range of NGOs like Community Health Education Society (CHES), South Indian AIDS Action Programme (SIAAP), DESH and INP+ who had, like Udaan and Freedom Foundation trained positive members as care providers. The ECS’s Grace Chapel, a network of PLHIV has thirteen micro-credit groups of WLHIV with eighty positive peer educators.

Sustainability and action at scale:
Shows how the initiative demonstrated sustainability. Also, describes how the initiative can be adapted to different social settings. as well as, at the local, national and regional level.

The build up of India’s response to HIV was largely powered by the models piloted by AAROHII. Treatment access initiatives of AAROHII’s positive members have led to the roll out of the Universal Access for Treatment by 2010 program.
  • GHTM piloted a model TB-HIV service which trains physicians from other states to tackle the growing burden of HIV-TB.
  • Sahara reaches services on HIV and drug use to 300,000 people each year replicating its model through 35 projects all over the country.
  • The Church in Tuensang district Nagaland is committed to taking up ECS’s work in the absence of other funding. Every village will soon have a ‘core committee of concern’ on HIV, by each village Church.
  • Udaan’s PLHIV members pioneered model drop-in-centers (DIC) that have became a one-stop sanctuary for the families most affected by HIV. The DICs offer counseling, referrals, financial support such as school fees for children with HIV, nutritional support for PLHIV and volunteers to relieve relatives of PLHIV in hospitals.
  • Yerala Projects Society helped Women Living with HIV set up a small electrical choke manufacturing unit whose annual turnover recently crossed ten million rupees.
  • Naz Foundation and Udaan arrange soft loans to PLHIV and their families for small-scale income generation initiatives.

Gender equality:
Depicts how the initiative helped to address the gender inequalities that fuel the spread of HIV. Moreover, reveals how the initiative involved men and women equally in the design and implementation of the responses to HIV.

The Women's Right Initiative (WRI) of Lawyers Collective established a pro-bono legal aid cell for victims and survivors of domestic violence. WRI’s advocacy materials on custody, guardianship, domestic violence International Women Law and draft of the Domestic Violence Prevention Bill are used in trainings on gender and law with law enforcement agencies.

PWN+ ensures non discriminatory care and support for PLHIV, facilitating women and child-friendly services at hospitals in areas of high HIV prevalence. Women Living with HIV are campaigning for recruitment of personnel to meet the increasing demand for HIV services and a few District and State level monitoring committees have positive women members.

AAROHII’s advocacy for gender equity in India’s response to HIV has initiated:
  • Comprehensive sex education for HIV positive young people.
  • Family planning services that consider contraception in the context of HIV treatment
  • Increased availability and accessibility of post-exposure prophylaxis for survivors of sexual assault
  • Increased availability and affordability of the female condom
  • Strengthening and expansion of sexual or reproductive health services including emergency contraception and safe legal abortion building the capacity of women to have safe, healthy pregnancies and avoid unwanted pregnancies
  • Improved integration of diagnosis and treatment of reproductive tract disorders into programs serving PLHIV

Innovation:
How the initiative made use of creative and unique approaches to contain the spread of HIV.
Also explains how the initiative directly addresses the socio-economic consequences of the epidemic.

AAROHII’s members eschewed conventional approaches for spontaneity. SANGRAM, SHIP and ICWO freed themselves from the suffocation of stereotyping the sex worker communities they worked with, and found in them their strongest allies.

The ECS put PLHIV and the Church at the spearhead of the response, creating ownership, inspiring financial commitment from the Church and setting the stage for VCT in the community without fear of stigma.
CHELSEA’s “Know your status” camps met with close to 100% success in the community. PLHIV speakers on national radio sensitized armed forces in Uttaranchal, Punjab, Haryana and U.P.
Nazareth Hospital built a wholly community-run support system of mutual care and referral for PLHIV and their families.

CHES and Freedom Foundation offered care, rather than prevention first, increasing receptivity to HIV education and condoms amongst those at risk. Like SPARSHA, they encouraged emotional ties between PLHIV and vulnerable communities, creating a stigma-free environment in which living was learning.

TANSACS and MNP+ established free legal aid cells for PLHIV. SANGRAM and YRG CARE conducted a people’s court where victims of HIV-related stigmatization presented testimonials to a two hundred-strong audience. The BNP+ ran its activities on donations, speaker’s fees, membership fees and tickets sold from cultural programs.

Partnership:
Describes the strategic alliances formed by the initiative in order to respond effectively to the HIV epidemic.

AAROHII was supported by committed journalists, who built public awareness even when HIV was an invisible unknown to most Indians. The Times of India, Mumbai and the Media Foundation, Chennai, carried positive stories on how Dominic D’Souza, the first Indian to go public with his HIV positive status, had set up a network to help others like him. The Media showed how the Lawyers Collective defended Dominic’s right to be freed from incarceration, inspiring other PLHIV to set up networks. The Heroes Project and CFAR deepened and widened the involvement of entertainment and news media in the response to HIV.

India’s earliest legal initiatives to uphold the rights of PLHIV were those of the Lawyers Collective. Working with AAROHII members, LC provided legal services to those victimized by HIV related discrimination in workplaces, hospitals and homes and emerged as the backbone of the human rights response to HIV in India, even drafting the legislation on HIV in India which is presently before the parliament.

The Church Alliance by ECS, considered a best practice by NACO and UNODC fostered cross-sector linkages with the Church, tribal councils, student bodies, schools and governmental agencies in Tuensang, Nagaland and built up a community owned alliance which is effectively responding to the epidemic.

Continuing the Saga of AAROHII
How others can walk the path to carry forward the inclusion effort that AAROHII had pioneered

The dissemination of each of the AAROHII Action Group reports are mostly in the electronic media and in the archives of the Solution Exchange web site. There is clear evidence that the sharing of both the success stories and lessons learnt is paying dividends. For instance, interested AAROHII partners with other collaborators take up those components of the AAROHII proposal that they want to implement. Examples of this are the Annual Award ceremony for the best DSD work in the country given jointly by NACO and UNAIDS. Another is the World Bank funded Development Marketplace Partnership Awards for South Asia.




As AAROHII is an Action Group it has a mandate only to innovate, test and make a transition for the newly generated knowledge towards implementing a pilot project. Thereby the Action Group is alive only up to the completion of translating knowledge into action, documenting this in an action group report and subsequently sharing this report with all the members of the community. Moreover, the knowledge products of the Communities of Practice from Solution Exchange are accessible to the whole community of development practitioners irrespective of their membership in Solution Exchange. Thus, Solution Exchange encourages this way of carrying forward by others the strategies of Action Groups like AAROHII.

Members of the Action Group and the AIDS Community of Practice after completing the National level proposal with its inclusion strategies felt that the saga of AAROHII must live on. Work on DSD must never stop, for our country to become the least stigmatizing one. Accordingly, in the AIDS Community’s visioning workshop in September 2006, the Joint Director of the Gujarat State AIDS Control Society (GSACS) made a presentation on following up the earlier action group on DSD by adapting it from the National level to that of a State. Thus, following the Visioning Workshop, the Project Director of GSACS was the guest moderator for the e-discussion on DSD activities, which could be taken up at the state level. Subsequently, using the inputs from the e-discussion, members of another Action Group identified the role of shaping an effective media strategy as one of its major activities. Thus a study entitled, "A Content Analysis of Coverage of HIV and AIDS in the Print Media of Gujarat" was carried out by GSACS on behalf of the Action Group. On completing this document, GSACS presented this third Action Group Report on DSD to all the members of the AIDS Community in October 2008.

In September 2008, a query by a consultant group of journalists working for the Press Council of India (PCI) invited members of the AIDS Community to comment and develop the Guidelines for Media Reporting on HIV in India. So, members recommended changes to the HIV Reporting Guidelines that would benefit the PLHIV community and reduce stigma and discrimination. The content analysis study on the coverage of HIV in the Print Media of Gujarat was also presented by GSACS as a recommended document. Feedback from the query posers’ showed that the Action Group work revealed hitherto unknown facts about journalists’ treatment of HIV, which helped in refining the Guidelines for Reporting in HIV.

Thus the saga of AAROHHI’s strategies continues till this day, even after the first action group that developed the inclusion approach for applying to a Global Biennial Red Ribbon Award completed its task two years ago.

Outstanding Leadership
Why AAROHII could demonstrate outstanding leadership in addressing stigma and discrimination related to HIV at the community level

This type of integrated collaborative action group endeavours gathering momentum and adding all like-minded actions from every interested partner, so that it snowballs into almost a mass effort, is a first for India. Many Action Groups, Workshops, Consultations, Projects, Guidelines, Bills, Acts and Laws on DSD, will sure follow and continue long after the tune started by AAROHII is heard. As the knowledge is shared and the initiative continues to gather success, the sky is the limit, for future stigma themes, across different geographic locations, in partnership with a diversity of organizations.

The passion to address stigma and discrimination galvanized the members of AAROHII. Together they have orchestrated a national movement against HIV – an epidemic that after one score years in this country has a low prevalence and an unscathed economy – both of which is sweet music to the ears! For AAROHII this is the testimony of what they stand for: the rising as well as the ascent of musical notes of a scale.

Lead Role of Knowledge Sharing in DSD
Analysis of the key factors in working successfully in DSD

An analysis of the key factors of our successful work in DSD will help us to replicate it. So, working for success in DSD, involves at first a profound understanding of the forms, contexts and nuances of stigma and discrimination. Herein, the main Solution Exchange method for knowledge sharing, namely the email based discussions on specific queries, documents, and issues, has brought out the most active issues as well as the members who could take it forward. Consequently, increasing our awareness on the relationship between stigma, discrimination and human rights, helps to appreciate its intimate connection. Subsequently, collecting and pooling together the Stigma-reduction approaches that the pioneers had adopted in the occasional face-to face meetings begins the ‘Action Group’ modality, which facilitates collaborative group work translating the generated knowledge to action and beyond. Action Groups like AAROHII and its subsequent siblings guided PLHIV to select those approaches that make the best fit to the issues prevalent in their community. For example, the plethora of approaches could involve:
  • Improving the quality of life for people living with HIV through integrated care, and advocating increased access to HIV treatment
  • Empowering PLHIV to take the lead in diverse support and advocacy activities
  • Counselling and support to HIV-affected families, including children, through ‘succession planning’ Promoting the human rights of PLHIV and providing redress for violations of their human rights
  • Mobilizing religious leaders to foster respect and compassion for PLHIV and to participate in prevention activities
  • Addressing broader inequalities through participatory education
  • Mobilizing community leaders to encourage greater openness around sexuality and HIV-related issues within communities by building on positive social norms
  • Raising awareness through the print TV, and e-forums media
  • Mobilizing the private sector to implement non-discriminatory HIV policies and promote understanding about HIV

The coexistence of seemingly contradictory HIV-related knowledge, of stigmatizing and sympathetic attitudes, and of discriminatory and caring practices may appear as a challenge to the Facilitators of Communities like us. However, Facilitators and Moderators must see the disparity in community knowledge as offering a space within which to begin discussion. Sharing of solutions can be encouraged only in a non-threatening way. Further, this lively exchange of solutions increases the awareness and education of the silent but listening audience in the community. In addition, such a participatory discussion promotes better dialogue between the veterans and the greenhorns. Moreover, catalyzing Networking and its attendant collaboration, Moderators help in developing the communities’ understanding of the epidemic and directly address the root causes of anxiety, namely, fears relating to contagion and serious illness, ambivalence about sexual difference, and so on.

In a good Facilitator’s hand, the molten issues in a community are the molding opportunities for the Resource Person to shape the Community’s response to the epidemic. Moreover, Moderators and Resource Persons of a virtual Community of Practice have an additional advantage as they can in real time reach thousands of members across state, national, and regional boundaries, connecting tried-and-tested approaches with hitherto virgin communities.

Finally, information is the only weapon we still have against HIV, as a complete cure is still evasive. So, what better ways than to share our knowledge with every person, so that everyone can prevent themselves from HIV, or if not, mitigate its effects?

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