At a young age of nine, Chinmay Modi found out that he was HIV-positive, like his parents. “Friends were asked to keep a distance, my family kept me locked in a room since there was a lot of crying with people even suggesting that I will die soon,” he says, sitting in his new office in New Delhi’s Lajpat Nagar on a late November afternoon.
Modi, a 24-year-old post-graduate, is one of the nine board members of National Coalition of People Living With HIV in India (NCPI+), a national representative body run by and for people living with HIV (PLHIV). Its mission is to improve the health and quality of life of the PLHIV community in India. “Our work includes partner testing, working with those who leave their anti-retroviral therapy (ART) incomplete or those who have a disclosure problem. Apart from this, we take part in awareness programmes and work for the rights of the community,” says Modi.
ART helps fight HIV infection and allows people infected with HIV to live longer. While the government was offering free ART for all HIV-positive patients up till now, the current amendments to the HIV and AIDS (Prevention and Control) Bill state that they would provide the treatment to PLHIV community only “as far as possible”.
According to clause 14(1) of the Bill, “the measures to be taken by the Central Government or the State Government under section 13 shall include the measures for providing, as far as possible, Anti-retroviral Therapy and Opportunistic Infection Management to people living with HIV or AIDS.”
Modi thinks this could be a problem. “This as far as possible clause is very vague. Advocacies have been going on. We have been saying that you don’t have to add anything else to the bill. Just remove this part,” he says. From fighting intense stage fear to advocating for PLHIV groups through talks and discussions, Modi has come a long way. Born and brought up in Surat, he used to make frequent trips to Delhi to meet people and speak on PLHIV issues publicly. “Since I was a kid, people usually listened to what I had to say. It helped a lot to gain visibility for our community.”
However, that had its own backlash. More visibility meant a lot of people got to know about Modi’s condition. “My school didn’t want me to study there any more. The parents of other students were protesting. It was only after a lot struggle by some NGOs in Surat that I was allowed to continue my education,” he says.
“I didn’t have friends in school. Even today, I don’t have any school friends I can catch up with. But because I was actively involved with the PLHIV community, it helped me cope up with the isolation,” he says. Due to the stigma of being an HIV-positive person, Modi’s become inured to discrimination over the years. “Flat-owners are generally sceptical of renting out houses even for work. They say that a lot of HIV-positive people will be coming and we don’t want that,” he states indifferently. “Kya karein ab? (What to do?) Kaun jaaye case ke jhamele mein? (Why get involved in the hassle of complaints?) We also have to get our work done.”
What else is making news
According to the annual National Aids Control Organisation (NACO) report, the total number of PLHIV in India is estimated at 21.17 lakh (17.11 lakh–26.49 lakh) in 2015 compared with 22.26 lakh (18 lakhs-27.85 lakh) in 2007. Children below 15 years account for 6.54 per cent. The report further mentions that ART centres in the country have increased from 475 on March 2015 to 519 on September 2015. The Care and Support Centres too have grown in number and there are around 350 such centres across the country. However, are they enough for the community?
“For every one person infected with HIV, there are two affected by it. One should realise that we are a large community requiring focused attention,” says Modi.