Sangli District Campaign to reduce Stgma and marginalisation due to HIV/AIDS.

For almost a decade now, the many-tentacled Sangli District Campaign to reduce Stgma and marginalisation due to HIV/AIDS has enabled positive people to live with love, dignity and respect in their families and communities, while accessing health care and other services that they are entitled to. The campaign has been effective for many reasons, external and internal, right from the native goodwill that exists in villages to SANGRAM’s own ideology of holding government services accountable.

These are some of the critical factors that have made the District Campaign what it is. Staff and volunteers, mainly women and youth, are drawn from the community. Community support is critical to an effective HIV/AIDS intervention at the district level. “Since they are drawn from the local village, it helps when there is a community crisis,” “There are informal family networks to support them in taking a stand. They are able to leverage their influence with the powers that be - the village panchayat, school teachers, doctors. So if there is a crisis, they can deal with it at the local level. This is why they are the pillars of the District Campaign.”

Staffing policies emphasize the inclusion of marginalized groups, including HIV-positive individuals and dalits.SANGRAM has always been committed to mainstreaming marginalized groups. In keeping with this, the District Campaign includes about 100 dalits and 5 HIV-positive individuals on its 180-member team. “I’ve been working for SANGRAM for three years as a condom distributor,” says Sneha. “But since I discovered I’m HIV-positive, I now work giving people information on HIV—among women in prostitution and sex work, at the bus stand, in gullies.”As fellow sufferers, HIV-positive staff has a different equation with their clients: the false hopes are cut out, but there is also a conviction that it is possible to lead a productive life with the disease.

Policies actively aim to empower campaign staff. Dalit employees have also built self-confidence through their work at SANGRAM, an experience that translates into high motivation. “I work on mandaps (tents) at weddings and festivals,” says S Jadhav. “At a high-caste Patil wedding some time ago, eight of us dalits were busy with the wedding preparations, but were hurt that we were allowed to drink water only from a separate vessel kept outside the tent, that too from three broken cups.” Jadhav’s father, a teacher, got tired of this discrimination and converted to Buddhism, while Jadhav did his masters in social work and started working with SANGRAM. “Upper caste people who want HIV-related information are forced to come to me,” he says. “I feel very good when I can help them.”

Military-style meticulousness is employed in planning and implementation. In every taluka, there is an incredibly detailed village mapping of the local population – including number of households, castes, every household with HIV, panchayat members, health infrastructure, private and government doctors, laboratories, teachers, anganwadi workers, police, schools, colleges, youth groups, temples and local festivals. Staff are motivated enough to use the information to make the programme more accountable and flexible.

A grassroots, down-up approach is used to manage HIV/AIDS. Strategies are responsive and flexible to the situation on the ground. When the district campaign started, there were hardly any home visits. Now they are the key. When the campaign found that villagers think an HIV-positive person `looks’ scrawny and weak, a game was devised to overcome this. Similarly, when the campaign realized that men were falling through the cracks of the HIV programme, it started doing HIV education during the Ganesh festival, when many migrant men return home. When it found that youngsters are shy or embarrassed to discuss sexuality, it devised competitive sex education programmes, making for a fun, enthusiastic way of learning what is anyway of great adolescent interest. The desire and the ability to respond swiftly and innovatively to local needs is what gives the District Campaign much of its strength.

Anonymous and confidential HIV-related services are provided. Anonymity and confidentiality are core principles when it comes to dealing with a disease that carries such stigma. When Seema Patil, head mahila sanghatika of Walwa, found that an HIV- positive man could not explain to his partner why he suddenly insisted on using condoms, she intervened – while respecting confidentiality. “We organized lane visits giving HIV info, and specially invited her family too, and counselled them all on the dangers of unsafe sex,” she says. At Primary Health Centers and civil hospitals, staffers actively yet discreetly seek out potential HIV patients on the basis of symptoms/case papers and follow up with counseling, home visits and referrals – without revealing their identities to others.

There is an understanding that HIV is just one among a set of related issues that human beings face. In a drought-hit taluka, a villager once asked: “Who will listen to HIV lectures on an empty stomach?” In response, SANGRAM organized rations and subsidized animal feed from its own funds for families supported by HIV-positive women, as well as HIV orphans and their caretakers.

The HIV/AIDS programme is often linked with other programmes. Following a camp for women in panchayats, the campaign initiated credit and saving groups back in their villages. Each savings group was then introduced to sewing classes, sex education, condom demonstrations, tuberculosis treatment programmes, and HIV counselling. The campaign also alerts families about government schemes for HIV-affected families. These include the Sanjay Gandhi Niradhar Yojana (which offers Rs 250 per month for widows of HIV patients) and low-interest group loans of upto Rs 10,000 for HIV-positive women for forming collective home-based industries. In this way, HIV was made part of a larger education project, woven seamlessly with life.

The campaign collaborates with other NGOs. Aware that the problem of HIV/AIDS is too immense and is best tackled in tandem with other agencies, SANGRAM often coordinates its efforts with other NGOs and institutions. Since the campaign focuses on Sangli district, it coordinates with World Vision in neighbouring Miraj. SANGRAM trains World Vision’s staff in sex education and refers cases to them. SANGRAM has also trained staff for Amhich Amche, an HIV support group, and held joint meetings with them. In Tasgaon, SANGRAM collaborates with the Prakash Shikshan Sanstha for the education of women and adolescents, doing sex education, tackling dowry issues and encouraging savings. It also coordinates with the Giants and Rotary clubs in many districts, and its sex education school programme are linked with the National Social Service (NSS).

It works with the government at all levels, from village panchayats to district-level health facilities. SANGRAM leverages its clout with local panchayats to effect change. “We believe in working with all the stakeholders involved,” “and a key element is the gram panchayat. Getting 500 panchayats to pass a resolution to take responsibility for HIV orphans really took some doing but was certainly worth it.” As some of the SANGRAM maitrins know women panchayat members, there is immediate bonding. SANGRAM has trained women panchayat members and sensitized panchayats, police patils and headmasters. SANGRAM also uses government health infrastructure. Apart from basing health workers at government health facilities, it trains government doctors, nurses, multipurpose workers and laboratory workers on coping with HIV/AIDS.

There is a belief in the indomitable power of one. Although the HIV/AIDS epidemic is enormous, every triumph is hard won and counts. The District Campaign always recognizes and revels in the indomitable power of one. SANGRAM has intervened in innumerable individual cases, refusing to take no for an answer. When an HIV-positive state transport driver in Kolhapur died, leaving behind a widow and two children, SANGRAM got her a job as a lady bus conductor. When a peon working at the panchayat samiti office died of HIV, SANGRAM got his widow a job at the local PHC. When the government dismissed an HIV-positive anganwadi worker, SANGRAM scientifically demonstrated that if she cooked food, she would not infect the children: the woman was reinstated. This attention to improving the life of each and every individual is what makes the District Campaign amazing.

The faces behind the faCade: the key to a successful campaign

The District Campaign is successful not just because it meets its targets, but also because it has highly motivated staff at every level. It seems as if staff are rarely off-duty, and from every taluka there are stories of an overheard conversation at the bus stand, or a casual chat with a patient in a clinic saving lives, thanks to an alert ear and radar that refuses to switch off.

Another contributory factor is a two–way process of strategizing, which greatly empowers campaign staff. Every monthly payday is an opportunity to exchange information and experiences, which directly shape campaign strategies; this in itself becomes an empowering process and enables the staff to take ownership of the campaign. So when a maitrin has to walk 4-5 km because there is no bus to a patient’s house, she doesn’t complain. She does it. And when a patient says, “We waited the whole day for you to arrive. You care for us more than our own family,” she is even more motivated, because she realizes how much her work means to others.

Several staffers share some of the intangible rewards of being part of the campaign. “At first, I was ashamed of this job and thought how low I have sunk, showing condoms for a profession!” says Amol Pandhare of Jat taluka. “But when you realize you can actually save someone’s life by changing his behaviour, you get a satisfaction that you would not get even if someone paid you one lakh rupees. It’s like clearing the leprosy of the mind - so the joy is greater.”