Organised networks of HIV- positive people have penetrated to the districts where they are active in reaching out to identified positive people. Most prevention and care programmes by both national and international bodies closely liaise now with DLNs to ensure the success of their projects. Rimjhim Jain looks at their achievements in different states
When the first case of HIV was identified in India in 1986, the infected person, Dominic D’Souza of Goa, was arrested and kept in isolation by authorities. In the 24 years since then, there has been a massive change in the way positive people are treated. The credit for much of this goes to the community based organisations of HIV-positive people, who have banded together to form District Level Networks (DLNs) that try to ensure no infected person feels isolated. They go to great lengths to see that the 2,80,954 infected people receiving anti-retroviral therapy (ART) from 226 public ART centres around the country stick to their regimen of drugs. From just a handful ten years ago, there are now 235 District Level Networks of people living with HIV and AIDS.
Saroja Maurya and her husband call the DLN in Chandauli, Uttar Pradesh, “our temple” because it reunited the husband and wife after a gap of 10 years. Saroja says there was a time when, “I felt like a widow even though I was not one.” Her husband, Ram Asray Maurya, diagnosed as HIV-positive, had left her. She was struggling against stigma and discrimination from her own family and others even as she looked after four children. She got herself tested at the Information Counselling and Testing Centre (ICTC) in Chandauli but never went back to collect her report which indicated that she too was positive. The DLNs work in close coordination with public ART centres and ICTCs, so when the Chandauli DLN obtained the list of defaulters, Saroja’s name was on it. She was tracked down by the DLN and counselled about her HIV status. Then the DLN traced Ram Asray, who was on ART. It organised a meeting of the two and after a decade, the couple met and talked. The Mauryas are now happy in their reunion.
These positive networks are centres of support for infected and affected people of all ages. They work in close coordination with NACO and other partner NGOs. Most of the DLNs provide counselling at the individual, family and group level. Depending on the need of the person, once consent is obtained the network members carry out visits to the home, hospital or field.
In 1997 the Indian Network of Positive People (INP+) was formed, a membership based organisation that has since expanded to 23 State Networks of Positive People under which are the 235 District Level Networks. The KNP+ or Karnataka Network of Positive People, for instance, which had just three DLNs in 2004, now has 27 DLNs with which 40,000 PLHIV (People Living with HIV) are registered.
Says Saroja Puthran, head of KNP+: “Our DLNs do advocacy, give home-based care, psycho-social support, referral services, provide linkages with government, NGOs and other community based organisations and also give legal support.”
Some of the best practices implemented by KNP + include organising insurance for PLHIV through local leaders, ensuring they get second line ART through NGOs, running an award-winning child care centre for orphans, coordinating with the Karnataka State AIDS Control Society to provide employment to a handful of PLHIV in ICTC centres and organising legal support through the Lawyers’ Collective.
The DLNs have emerged as havens of support for positive people where they can be open about their status, share their feelings and gain confidence to make a new beginning. Support group meetings are held at the district and taluka level. In these meetings DLN members are given psycho-social help, educated on treatment and adherence to it and on positive living, nutrition and preventive behaviour. Women and children are also referred by the DLNs for testing, PPTCT (Prevention of Parent to Child Transmission) and ART services.
DLNs work towards providing a strong continuum of care for positive people, stepping up social security for them, rehabilitating HIV-positive sex workers and those belonging to sexual minority groups and hiring child counsellors. They closely liaise with ART centres, Integrated Counselling and Testing Centres (ICTCs) and the District TB Centres. They also carry out advocacy to reduce stigma and discrimination and fulfil important legal needs.
Khadiza Begum, now a peer counsellor, vouches for the emotional and physical support provided by the DLNs. She was a house-wife who had no idea what HIV or AIDS was till she was diagnosed positive during her pregnancy. Extremely upset, she came in contact with the DLN through the ICTC at Bareilly, Uttar Pradesh, in April 2008. She was counselled on her pregnancy test and enrolled with the DLN which then began regularly interacting with her to share information on nutrition, positive living and opportunistic infections. There were several rounds of counselling and she was put on Nevrapine for protection of the child in her womb. She eventually had a baby girl through normal delivery. After 18 months she was counselled again on getting her child tested for HIV and she agreed.
Khadiza is now working through the DLN for the positive community. In April 2009, she went to the district magistrate’s office and discussed with him the problems of positive people, asking for medical and nutritional support for affected families that were poor and in need. She also submitted an application for support for herself and her child. The DM approved Rs 1,000 for her and a little later she succeeded in getting an amount of Rs 25,000 for helping other positive people.
“There are several day-to-day challenges that the DLNs face. For instance, getting the correct contact address of PLHIVs is itself a big hurdle. A weak area is identification of marginalised groups and sexual minorities. Counselling for positive children and ensuring paediatric care for infected and affected children continues to be a grey area,” says Saroja of the Karnataka network.
Filling this gap somewhat is the DLN in Jalore, Rajasthan, which is running a care home for 30 positive children, the Vatsalaya Child Care Home. Jagdish Saini is the moving force behind the community care centre which offers facilities like free accommodation, treatment, education, food, sports equipment, games and recreational activities. The DLN was also instrumental in getting pensions for 108 widows. Saini networked with the district and state administration to simplify procedures that make the process of receiving pension in the case of a widow long and humiliating. A Positive Women’s Network and a Women’s Self Help Group too were set up by the DLN under Saini’s stewardship. He also lobbied for organising bus passes for positive people.
Saini himself discovered he was HIV-positive 12 years ago, in Pune, Maharashtra. His wife and 12-year-old daughter too are positive. The doctors told him that he would not live for more than two months, and advised him to leave the city and return to his native place. A few months down the line, when he saw he was still far from dying, he decided to go in for treatment and educated himself on the infection. He joined the DLN in 2004 and soon became an active member.
The Jalore DLN is supported by NGOs like the Lions Club, Rotary Club and Make-A–Wish Foundation besides being networked with the district and state administration. Its strong showing has meant that when the Global Fund, an international funding organisation fighting AIDS, TB and malaria, started its Round-6 programme in October 2007 in the district, Jalore was the first DLN in Rajasthan where the programme began.
Across the country, DLNs have now become significant players in pushing for the rights of positive people and establishing close linkages with government and non-government efforts. In recognition of their role, most prevention and care programmes by both national and international bodies closely liaise with DLNs to ensure the success of their projects.
(Rhimjhim Jain has worked as a news media professional in various capacities since 1992. Currently she works as an independent communications consultant and journalist)
InfoChange News & Features, March 2010