Prologue

HIV surfaced in India in 1986. Women in Chennai, who had been picked up under prostitution charges and placed in remand, were tested, without consent of course, and it became apparent that India was not immune to the virus, despite its claim to "morality". The news made big headlines; surprisingly enough the entire issue of the women was completely out of the papers soon, though the subject of AIDS continued to excite debate.

In 1988-89, an investigative study on human rights and HIV by a journalist led to the discovery that the women who had been infested continued to languish in detention. This was illegal, because they had clearly exceeded their periods of sentence in many cases. However, the excuse trotted out was that their release would fuel spread of HIV in the country. The meeting with the women proved to be a turning point, however, and a writ petition was filed by the journalist in the Chennai High Court, seeking release of the women. The petition argued, among other things, against gender discrimination, absence of legal clauses that allowed people to be held for reasons of HIV infection, and gross abuse of rights of women as guaranteed under the Indian Constitution. Indeed, the women were not allowed to meet with their families in the intervening period; legal aid was barred, media was taboo, only researchers and doctors visited them regularly. As one woman told the journalist, "you come, write about us, go around the world, make your name .......What about us? I refuse to talk to you or anybody else....."

Meanwhile, 900-odd women had been transported from the red-light areas of Mumbai to Chennai with a promise that they would be sent to their families. This was not to be. The state went on a testing spree, declared over 600 as anti-body positive and threw them into jails around Tamil Nadu. Thus, when the petition did come up for hearing in early 1990, there were close to 800-odd women being held by the state.

Preparing for the case was an exercise in strategy. While India boasted several feminist lawyers, it was important to keep in mind, that at that time, AIDS excited a huge amount of fear, there was very little information going around, that people, even judges, could well be swayed by the persuasion that holding infected people was an important public health measure. To further pose it as a feminist issue, would, in all probability, eliminate many of the judges, who were men, as well as brand HIV a woman's issue. It was important to then choose a defending counsel, whose seniority, integrity and credibility were outstanding, so as to excite respect.

Only one man qualified for this job. At that time, he was close to 80 years old. He was considered a brilliant lawyer and had established formidable reputation for both his acumen and integrity. In addition, he came from a family that commanded respect through out the country. In Indian society this accounted for a lot, and still does. Only five feet in his shoes, he dwarfed everybody else in the courtroom. In reply to a lengthy argument by the prosecution, he simply said "Your Honour, there is no law under which this detention is possible. When such a law is introduced, I will reargue the case. Until such time, the women must be set free." Earlier, the judges had requested an investigating commissioner to talk to the women and her report added substance to the defence of the women. They were found to be ignorant of their health condition; they had been asked to sign papers or to affix thumb prints, without knowing the contents; their families had been denied permission to visit; they had no legal aid, and most of all, they wished to be free. In many cases, the families had come forward to take responsibility for the women. In July 1990, the women were freed and in future, no Indian woman or man could be held with impunity by a state that responded to the threat of HIV by imprisoning its citizens.

The South India AIDS Action Programme (Siaap) was born out of this experience

Between 1990 and 1996, Siaap attempted to follow upon its first act of intervention with building community-based support structures that would contain the rapid spread of HIV. Working within a network of 45 NGOs in the States of Tamil Nadu, Andhra Pradesh and Karnataka in South India. Siaap had established largely preventive interventions among truckers, women in prostitution and blind people in these States. Intervention components included education, free distribution of condoms, access to STIs referrals and access to care. Advocacy remained a strong thread through all intervention - from ensuring improvement in quality of condoms, equitable treatment for sexually marginalized communities at public hospitals, inclusion of PLHAs at decision-making fora, coordination with the National Commission for Women and the National Commission for Human Rights in addressing issues important to people with HIV and prostitute women. Many times, the line between advocacy and service was thin. However, it is clear that one built upon the other and vice versa.

This article will talk about one area of HIV intervention that Siaap embarked upon - the area of counselling - in terms of advocacy related with the acceptance of quality counselling services as an integral part of national policy on HIV/AIDS.

The premise was clear. Counselling services at STI clinics would bridge the efforts between prevention and cure. Placing NGOs' staff within government hospitals would strengthen both partners; upgrading existing infrastructure and facilities, building upon existing structures were essential in a resource scarce country, such as India, building partnership with local communities and service providers would increase demand as well as encourage quality and accountability.

From the advocacy perspective, the objectives were straightforward

1. Strengthen NGO - government collaboration for increased sustainability.
2. Maximize effectivity of existing health services.
3. Increase recognition of counselling as an important element of HIV intervention.
4. Increase acceptance of counselling by doctors and nurses.
5. Improve and help set minimum standards for counselling intervention in India.
6. Strengthen bridging between institutions and communities.

Methodology

Partnership building was the principal advocacy strategy. This needed a sound understanding of the issues involved and the nature of the institutions that one had to intervene with as well as a personal relationship with the people who worked in the institutions at many levels and not merely at the top. Equally essential was a consistent presence in communities; the personal credibility and integrity of Siaap representative's in the negotiations, and most of all, sheer persistence. It took more than three years of ongoing discussions, often frustrating, before the project was cleared.

1. Partnership with Government

Since Siaap's policy has been to strengthen existing services, it was imperative to work with the government, as it is the largest public health service provider in the country. Quality of service is often poor, however, personnel, materials and structures can be provided for, at least in principle. It was important to keep the principle in mind and not be prejudiced by the existing standards of practice. It was important to build upon the strengths and not concentrate on the weaknesses.

Discussions were held with the Government of Tamil Nadu way back in 1995, before counselling was acknowledged as important, let alone essential, by most hospitals around the country. The discussions did not dwell upon the need for counselling, rather they dwelt upon the possibility of Tamil Nadu becoming the first State in the country to achieve what was advocated by WHO (before it became UNAIDS), the policy setters for HIV, and the World Bank, the principal donor for HIV interventions in India. The discussions highlighted the pride and prestige that would be associated with such a project and pointed that it would secure Tamil Nadu's position as the premier State for HIV-related work in the country. It was emphasized that the State was not being called upon to make huge investments, other than granting permission for Siaap-trained counsellors to be placed in all of its hospitals. Siaap's own achievement up till this time were important in lending the credibility to buttress its arguments.

Ongoing relations with key individuals through the years, who were not necessarily decision makers at that time, paid off when these people eventually got to a position where they could and did take the decisions.

2. Partnership with Associations of STDs specialists in the State

Early on, Siaap had been engaged in discussions with the Associations of STD doctors in the State in an attempt to persuade them to not test without consent, and, to provide greater privacy and sensitivity to their patients. This discussion hinged around the understanding that the doctors felt completely over-shadowed and undervalued in the current pecking order. They felt, justifiably, that STD treatments were an integral part of HIV intervention. Yet, they were barely present in decision-making bodies and were never in the limelight, as scores of other people were and were not recognized as an equal partner with HIV prevention programmes. Inviting some members to help Siaap's activities as colleagues, to participate in key national meetings and acknowledging their services from public platforms were some strategies that helped them consider Siaap intervention in a positive light. Since many of them worked in government hospitals, or were friends of those who did, there was a degree of support for Siaap, built in the work place and not merely among policy makers.

3. Partnership with Communities

Since Siaap interventions have been grassroots activities, it was decided to marry the community outreach element with the counselling element. Thus, trainees were expected to provide counselling at the hospitals in the mornings and provide outreach in the afternoons. The premise was that the country had many excellent institutions offering excellent quality of service; however, these were rarely accessed by people who needed them, due to the bureaucracy rampant in the government sector. Building a bridge between people and institution in a way that ensured consistent and supportive presence in both these places would encourage change.

4. Partnership with Professionals

At the outset, it was decided that the project would seek inputs from highly respected professionals in the field, no matter what it cost. In India, individual centered counselling is not common. The need for therapy is largely seen as the first step towards acknowledging insanity. Most commonly there are two varieties of counsellors - medically trained "psychiatrists" and social workers with no special training in counselling skills. Most counselling was limited to information giving and advice. Sometimes, it even took the form of persuasive coercion, as, for example, telling a patient why an HIV test was necessary for him/her, without allowing for an opportunity to understand the issues involved and to say "No". Though there were a significant number of excellent "professional counsellors" who bridged the two, most had not dealt with the issues of sexuality and HIV/AIDS. Also, there were very few trained "trainers" in this area and the concept of travelling large distances within three States for "site supervisions" was not a common practice. One was looking for a combination of people that would have experience in all these areas as well as be willing to work fulltime for an NGO sector wage.

An alliance with Netherlandse Stichting Gestalt, (NSG), led to two fulltime trainers partnering with part-time Indian trainers to put the training programme in place. Gradually, alliances with other Indian professionals increased; a curriculum committee comprising both international and local consultants was also set up.

For the graduation of its second batch of trainees, Siaap invited representatives from the Government AIDS Control Societies in the three southern States where the programme operates, to participate in the evaluation. It also invited Indian professionals not connected with the programme to be part of the process. This increased the understanding of the programme and encouraged its endorsement both from within the professional community as well as the governments.

5. Partnership with Donors

Siaap's association with HIVOS, currently its only donor, has been enormously constructive. Building personal relationships as well as professional relationships, ongoing discussions on a number of issues pertaining to HIV, regular interaction, and some disagreements have lent an enviable depth to a partnership that spans nearly ten years. This has led to a mutual sense of respect and trust. Siaap is confident in the knowledge that its projects will be supported where justified, HIVOS is proud that Siaap's interventions have been recognized as pioneering and of high quality in India and abroad..

Outcome

A measure of the "success" of this approach can be gauged from an impact study of the programme conducted in July 2000. The study highlights:

• Significant increase in people accessing and completing treatment.

• Significant increase in women accessing services.

• Marked improvement in "privacy", "confidentiality" and "sensitive treatment" of patients.

• Non-judgmental treatment for PLHAs, prostitute women and gay/bisexual men.

• Widespread recognition and acknowledgement of counselling as a critical intervention for HIV/AIDS.

• Network of 84 counsellors in three Indian states.

• Endorsement of Siaap training programmes by state governments.

• Siaap director chosen by the National AIDS Control Organisation, (NACO), and UNAIDS to review the national counselling policy.

• Requests by doctors for counsellor placement in hospitals where the service is unavailable.

• Insistence by doctors on "Siaap-trained counsellors" to ensure minimum standards.

Limitations

• Inadequate follow up of advocacy principles in the programme.

• Emphasis shifted to technical components.

• Organizational upheavals with regard to balancing needs of "professional staff" and "non - specialist staff".

• Difficulty in integration of Western perceptions / principles of community and individual relationships with Indian perspectives and practices.

• Poor maintenance of relationship with governments and with STDs associations.

• No clear direction or training on advocacy components of the project for counsellors.

Epilogue

The counselling programme was officially launched in 1997. However, a substantial amount of spade work had been done without specific planning for the programme in the preceding years. Often, advocacy "strategies" are not recognized as such until they have come to pass. Often, they are not integral to the process of planning project. This experience has highlighted to those of us who were part of this process, the need to consciously plan for an advocacy component in all projects in order to ensure both effectivity and sustainability. Our project is currently "successful". Will it be sustainable?