Over the past two years, an NGO has helped people in a north Karnataka district with a high rate of HIV to cope with the devastating effects of the disease. It has also given them a voice to address the stigma and discrimination associated with it.
"When I got to know about my HIV status, I did not know where to go. My husband who passed on the infection to me just disappeared one day, while my younger son too succumbed to the virus. I was helpless. This was the time when a counsellor introduced me to Jeevan Jyoti," says 32-year-old Shabnam.
Shabnam has been on anti-retro viral treatment for the past two years and is living a 'healthy' life with her mother and elder son.
Moreover, she has become a counsellor on prevention of parent to child transmission of HIV, all thanks to the Jeevan Jyoti Network.
"I'm illiterate but I have vowed to save the lives of all children who get HIV from their mothers. I do not want anyone to face what I did," she says.
An initiative of the India-Canada Collaborative HIV/AIDS Project to provide support services to people living with HIV/AIDS, the network was established in 2004.
It now has regional centres in all six taluks of Bagalkot and has set up a drop-in counselling and treatment centre with ICHAP's help.
With a three per cent prevalence rate HIV/AIDS in Bagalkot, doctors of the Karnataka Health Promotion Trust say around 50,000 people out of a population of 17 lakh are estimated to be infected with the virus.
From three persons who attended the first meeting of the organisation for HIV-positive persons, the membership of the Jeevan Jyoti Network has risen to 2,800 today.
"There was a felt need for a kind of hospice for people with HIV-AIDS in Bagalkot. We needed a place where they could come, sit and talk freely. A centre where we could provide quality life for all HIV-infected persons," says Nagendra, project manager of Jeevan Jyoti Network.
The network holds monthly support group meetings for its members and organises health clinics for all people on alternate days.
It also organises two clinics a month where people with HIV-AIDS can access treatment for infections like TB and bacterial pneumonia as well as counselling services.
But members of the network feel that more than anything else, the forum has given them a strong voice to address the twin issues of stigma and discrimination associated HIV-AIDS.
Drakshiyani, a district-level officer of the network, reminisces about the time when she addressed a gathering on HIV-AIDS for the first time.
"I was so scared. I had tears in my eyes. I was wondering how this group of NSS students (her first audience over three years ago) will react on knowing that I am HIV- positive. Fortunately, I had a good response from them. I realised that we have to talk about the disease to curb it. I noticed that if I disclosed my status, it instilled more confidence in people, especially women," she says.
According to Jeevan Jyoti Network president Kalappa, about eight to 10 people come to its counselling centre every day and over 300 HIV-positive people get themselves checked every month.
However, even if there are six voluntary counselling and testing centres in each taluk of Bagalkot, there was no centre for anti-retro viral treatment there till last month and HIV-positive people had to go to Hubli to get medicines.
Meanwhile, there is no stopping for the network. Its members hope that by reaching out to the general community and making home visits, they can create a conducive environment for people with HIV-AIDS.
"We want to ensure HIV-positive people are responsible in their sexual behaviour and that they do not spread the virus. We try to tell them that HIV is not the end of the world and through healthy living and good nutritional support, positive people can lead a healthy life too," says 48-year-old Kalappa, who has mobilised many other HIV-positive people to join the network.
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