“People who test positive for HIV need to know they are not alone," says Loon Gangte, 40, founder head of the Delhi Network of Positive People.
There are 23 such state-level and 126 district-level networks run by and for HIV positive people in the country, with over 44,000 members. "We have a pan-Indian network called the Indian Network of Positive people (INP+), which is active in advocating policy change to ensure the rights and needs of HIV positive people are respected by the government," says Gangte.
Like many other teenagers in Manipur, Gangte started injecting drugs when he was 17. "Two of my friends did it, I thought it was cool," he says. When he tested positive for HIV in 1997, he was shattered, but then decided to take charge of his life and help other young people like him.
DNP+ focuses on helping other HIV positive people help themselves by getting treated. "Peer counselling and support becomes important coming from HIV positive people because we have been through it. My group does a lot of treatment advocacy and literacy as treatment can truly transform an HIV person's life and help him live long. The government now offers people free medicines to treat HIV. We teach them where to get the medicines, how to use them and take other such decisions about their lives," says Gangte.
Currently, he is supporting the demands of INP+ to force the government to make second generation drugs available to people who have developed resistance to first generation medicines — the stavudine/lamivudine/nevirapine combination — provided under the government programme. "There is an immediate requirement for second-generation AIDS drugs because many people have been living with HIV in India for over a decade and have developed resistance to the existing combinations," says Jacob John, advocacy officer, INP+.
Second generation drugs are far more expensive and push up cost of treatment to Rs 10,000 a month, as compared to the cost of first generation drugs — Rs 1,000.
The government has been providing free first generation antiretroviral drugs to 48,000 people from 110 voluntary testing and counselling centres across the country, but that is clearly not enough. "You can stop HIV by using prevention methods such as condoms, but to stop AIDS, you have to ensure that the antiretroviral drugs used to treat AIDS are available to everyone," says John.
Nine years of living with HIV has not dampened Gangte's enthusiasm to live life on his terms. He is getting married later this month to a girl he met at work. It's a typical boy-meets-girl story with a happy ending, but the girl's parents do not think so. "There is some opposition to the marriage because she is not HIV positive. We want to get married by the end of this year and I'm sure we will convince them," says Gangte confidently.
He is happy that he has beaten the virus — physically by taking medicines to treat HIV, and mentally by not allowing the virus to make the difference to his life. "When I told by landlord I had AIDS, he refused to believe it, saying, how can it be? You are laughing, playing the guitar, listening to music and travelling all the time. It took me three years to convince him and now he wants to help me with my work," laughs Gangte.