Wall Street Journal - July 12, 2004
Joanna Slater, joanna.slater@wsj.com

The reality was more frightening. Mr. Kumar had died of AIDS, and before long, Ms. Krishnan and two of her children would test positive for HIV, the virus that causes the disease. "I knew the intensity of the stigma," Ms. Krishnan says of her decision to hide the truth. "I was scared for my children."

Those fears were justified. A nurse from the hospital had a relative in the town and slowly the news started to spread. Neighbors who once ate at the family's modest one-room house stopped coming. Ms. Krishnan's 9-year-old daughter, Akshara, and 6-year-old son, Anandakrishnan, were shunned by children, including their own cousins, who used to play with them.

More than one person told Ms. Krishnan it would be better for everyone if she moved elsewhere. The final blow came when both her children were denied entry into local schools.

In India, such treatment isn't uncommon. As the world's second most populous nation attempts to stem a potentially disastrous AIDS epidemic, the all-pervasive stigma attached to the disease -- a situation that isn't unique to India -- remains a huge challenge in combating its spread. The discrimination is a compelling reason for people with the virus to stay silent about their condition, to avoid seeking information or, like Ms. Krishnan, to dissemble.

With more than 4.58 million people living with HIV or AIDS, India now has the second-largest number of cases in the world, just behind South Africa. Experts say India is at a critical point in tackling the epidemic and that a huge prevention effort is necessary to contain it. At the same time, ignorance about how the disease is spread remains rife.

The tale of HIV-positive children like Akshara and Anandakrishnan, who were kicked out of school after school in the state of Kerala, is a case in point. Despite living in what is India's most literate and best-educated state, they continue to face a wall of fear from parents and teachers -- and they are the lucky ones, say experts and activists, since their cases have caught the attention of sympathetic nongovernmental organizations.

Elsewhere in India the situation is much worse. Ashok Alexander, who heads a $200 million initiative by the Bill and Melinda Gates Foundation to stem the spread of the disease in the country, says AIDS stigma is the biggest barrier to prevention. Frequently, people who reveal that they are HIV-positive lose their jobs, are rejected by their families, and face harassment or violence from neighbors or even the police.

"We are not open about the topic of sex," Mr. Alexander says. As a result, he explains, the prevailing attitude is that sexually transmitted diseases such as AIDS only happen "to 'those dirty people who do those dirty things' ... so there's stigma, there's discrimination, and there's a lot of apathy."

A recent study of people with HIV in four Indian states sponsored by the International Labor Organization found that as many as 70% had experienced some form of discrimination. More than 30% said that treatment came from their own families as well as at hospitals. To shield themselves and their children from stigma, some claimed they instead were suffering from jaundice, cancer or tuberculosis.

The cases in Kerala demonstrate just how tenacious that stigma can be. Home to approximately 100,000 people living with HIV/AIDS, Kerala ranks highest among all states in India in terms of awareness of the disease. But awareness isn't necessarily accompanied by accurate knowledge or tolerance.

M. Gunavardhanan, the head of the state's AIDS prevention office, says he was surprised at the attitudes even among elected officials. When a delegation from Kerala went to New Delhi for the first-ever national forum on the disease last year, he recalls, a local politician who saw several HIV-positive activists serving themselves lunch from a buffet refused to eat the same food.

Last year, two HIV-positive children, Bency and Benson Chandey, became a cause celebre in the state after their grandfather waged a battle to have them admitted to a public school. The children, now respectively nine and seven years old, were kicked out of three schools after their HIV status was revealed. But even after the intervention of the chief minister of the state, it took nearly a year for them to return to school because of resistance from local parents.

While Bency and Benson went back to school, children like Akshara and Anandakrishnan are still struggling. At Anandakrishnan's kindergarten last year, all the other children stopped coming for six months to protest his presence. Eventually, he was kicked out. Ms. Krishnan has tried repeatedly to re-enter his sister Akshara in the government primary school in Kottiyur, only to be told by officials that it wasn't possible.

"People used to say, 'Why give them education? They're not going to live long,' " says Ms. Krishnan, her voice breaking. "I never wanted to create trouble for others, I just want the chance for my kids to study."

Rejected by her in-laws and facing daily hostility from neighbors, Ms. Krishnan, now 30, says she considered committing suicide. Hope came in the form of a nongovernmental organization called Navajyothi, which heard about her situation, provided her with a livelihood educating people about AIDS and offered to help get her two younger children in school (her eldest daughter is HIV-negative and studying normally).

Akshara, who says she would like to be a government official when she gets older, climbs on her mother's lap as she talks. But the child -- a brilliant student, according to a former teacher -- hasn't been in school for a year. C.P. Girija, the headmistress of the local primary school, pleads helplessness when it comes to getting Akshara back in class, saying other parents have warned they would withdraw their children. "If parents raise this type of threat, what can we do?" she asks.

Government health experts have come to the school to educate teachers and parents about HIV and its spread, to no avail. "Why can't the government educate them separately? asks P.C. Ramakrishnan, the school manager.

The Lawyer's Collective, a group in Mumbai, formerly known as Bombay, that provides free legal services to the poor, is preparing national legislation that would tackle discrimination against people with HIV/AIDS. "We want to bring the disease to the fore, and then we can treat it better," says Vivek Divan, project coordinator at the HIV/AIDS unit of the collective.

For Ms. Krishnan, that can't come too soon. At the end of June, the parents' association at the local primary school in Kottiyur once again refused to approve Akshara's admission. Ms. Krishnan and the Navajyothi NGO are considering taking the matter to court. The law is on their side -- Kerala has outlawed discrimination against HIV-positive children in schools -- but the larger battle to change the attitudes of parents and teachers has only just begun.

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