He knows the pain and stigma. In his last few years, he wants to tell others about aids.
Surprisingly, Naresh returned from the spiritual journey energetic and confident. For the first time, he began looking at HIV as any other infection. He learnt that if treated at the right time with the right kind of medication, an infected person can live normally. There were two options before him—accept fate and wait morosely for death or fight and live like a survivor—he opted for the second.
In his case, luckily the doctor had detected the infection in time. Naresh decided he would work to help others like him and also spread awareness about HIV. On March 3, 2004, he attended a workshop of the Lawyers’ Collective in Delhi. The event came as an inspiration and he decided to form a network of HIV positive people in UP. The problem was how to bring the infected people together.
For a year, he travelled across the country attending conferences on HIV/AIDS and in one such event, he even dared to introduce himself as an HIV positive. His wife too accompanied him on such workshops where the couple shared their experiences and talked about HIV management. Later, with the help of an Allahabad-based doctor, Amitabh Upadhyay, who referred all HIV positive people to Naresh, a network was formed. On April 7, 2005, the UP Network for People Living with HIV/AIDS Society took shape (UPNP).
Naresh has since set about his task. He met officials of the UP State AIDS Control Society (UPSACS) and offered to cooperate in the government care and support programme. But his offer fell on deaf ears. Undeterred, Naresh decided not to wait for the government authorities but to initiate the mission on his own. In six months, he brought together about 150 HIV positive persons from different parts of the state and held counselling sessions. Most were from lower middle class families who had lost all hope. About 30 of them are still getting antiretroviral therapy with the help of this network. About 25 have become active members of Naresh’s network.
The lack of response from the government is recompensed somewhat by the interest allied sectors have shown. Naresh has held meetings with NACO authorities to ensure that HIV positive people are involved in its National AIDS Control Programme, woven around a five-year AIDS management plan. NACP’s phase II is coming to an end and the government is currently charting the strategy for 2006-2011.
Each new case of HIV has the involvement of at least one HIV positive person, says Naresh. Therefore, it is necessary to involve them in management. He has chalked out a strategy—first the patient is sensitised and educated. For instance, they’re told not to donate blood, destroy the syringe they use and use a condom. If they in turn spread the message to other infected people, the impact will be greater.
He wants to remove the stigma and discrimination linked to HIV. Says he: "Wherever I introduce myself as an HIV positive person, the first question to pop up is—how did it happen. People immediately link the infection to the person’s character, that’s wrong."
UPNP has no regular funding. Members pool in funds and sometimes they get sponsorship for workshops. It was recently affiliated to INP (Indian Network for People Living with HIV/AIDS) to get assistance for treatment options. Naresh sums up, "We’re on a one-way journey from where there is no coming back. For me this is a mission giving me strength to survive and an objective to look forward to."
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