NEW DELHI, India — India has the third-largest population of HIV-positive people of any country in the world. Yet for the last five months, a 7-year-old boy in the state of West Bengal endured a life of isolation when the parents of other children at his school discovered that he had the virus.
A hundred parents signed a petition demanding that the boy be asked to leave. His grandmother, a teacher at the same school, was made to take an HIV test to ascertain her “purity.” It was negative but, she says, she has faced verbal abuse ever since.
Media outcry in recent weeks ensured that the authorities took action. The state’s child welfare board convened a meeting at the private school to counsel parents about how HIV spreads, and urged them to retract their objections.
The constitutional right to education allowed the boy to return to class, but his grandmother would have had a much harder time winning back her job if she had been fired because of HIV.
The National AIDS Control Organization of India (NACO) lists the constitutional right to equal treatment as one of the fundamental protections that patients should have access to — but this right cannot be claimed against private institutions, and does not explicitly cover discrimination because of HIV infection.
“Right now, you can only challenge discrimination against the state,” said Nithya Rajshekhar, a legal officer with the HIV/AIDS Unit at the human rights firm Lawyers Collective. “If a private hospital decides not to provide you with treatment, there is not much you can do about it.”
More from GlobalPost: Cupid for India's HIV-positive
A bill specifically outlining the rights of those living with HIV was drafted eight years ago. It prohibits discrimination based on HIV status, outlines the right to informed consent before testing, introduces educational programs on AIDS and HIV transmission and makes the provision of free and complete treatment by the government compulsory.
However, the bill is still with a parliamentary committee and unlikely to come up in the next session of parliament, according to a senior NACO official who did not want to be named.
While the bill stalls, NACO statistics indicate that India’s efforts to prevent and treat HIV are showing results. According to its data, HIV incidence has reduced from 0.41 percent of those above 15 years of age in 2001 to 0.27 percent in 2011.
These gains are a result of improving awareness and active prevention and treatment programs, the official said. Some 18,000 testing centers across the country reach out and test vulnerable populations, and 1,300 antiretroviral treatment centers distribute life-saving drugs for free to 900,000 of India’s 2.1 million affected people.
“We have national campaigns on television, hoardings and advertisements at the state level, and interpersonal communication with high-risk groups,” the NACO official said. The organization collaborates with 1,800 NGOs to carry out awareness and intervention programs, and also trains doctors, health workers and the police. “We have targeted interventions with people practicing high-risk behavior, as this is a concentrated epidemic amongst groups like sex workers, MSM [men who have sex with men], truckers and migrants.”
But the progress is precarious, according to activists and social workers, who say that cuts to the health budget have affected stocks of antiretroviral medicines and caused breaks in supply. As HIV patients need to take the medication every day for the rest of their lives, missing doses can help the infection develop resistance. The NACO official denied a lack of supplies in the first two lines of the treatment, but admitted that the third line, given to those who have developed a resistance to the first two, is currently in short supply because of budget cuts.
The proposed bill would oblige the government to fill such funding gaps. It would also address the stigma that led parents to force an HIV-positive child out of school, as well as other daily injustices. While activists admit that awareness has improved, discrimination continues at the workplace, at home and in medical facilities.
“Many people who are positive cannot share their status at the workplace or even at home, because there is this very real fear that they will be thrown out of the house or a rented accommodation,” said Anjali Gopalan, founder of the Naz Foundation, an NGO that specializes in HIV and AIDS issues.
More from GlobalPost: The new front line in the fight against HIV: 'Sugar daddies'
The Lawyers Collective, too, regularly fields cases of domestic violence and abandonment against women with the disease.
“There is a lot of discrimination in your home or with your in-laws, or in a hospital where doctors or medical staff fear that by providing medical intervention, they become vulnerable to getting HIV,” said Rajshekhar.
What the bill wouldn’t tackle, though, is persistent prejudice against high-risk groups like LGBT people, sex workers and drug users. People often assume that members of these groups have HIV.
“The bill does not want to protect vulnerable groups such as LGBT, drug users and sex workers merely because they are drug users and sex workers,” said Rajshekhar. “They will protect them if they are HIV-positive, but they will not protect them if they are not HIV-positive.”
The re-criminalization of homosexuality in 2013 made matters worse. The Naz Foundation, which spearheaded a 2001 lawsuit that effectively struck down India’s ban on sex “against the order of nature” until the Supreme Court reinstated it two years ago, founded its arguments on the difficulties it faces spreading HIV and AIDS awareness among a repressed and vulnerable community.
“The fact that a law criminalizes a community doesn’t allow that community to keep itself safe: How do you do that if you yourself are seen as the problem?” asked Gopalan. “We still don’t talk openly about transmission in the gay community.”
Social attitudes like these need to change if India is ever to end its HIV epidemic, activists say. Gopalan pointed to the reluctance to introduce needle-exchange programs and the discomfort with discussing sex and protection with children. It’s a talk that would definitely have benefited parents at the school that forced out the HIV-positive boy.
“If we are serious about prevention we have to talk openly about how infection is happening, and how we can prevent it,” said Gopalan. “At some point young people are going to turn around and ask us why we did not share information with them when we had all the information.”