India: The orphans of HIV

Editor's note: The names of the teenagers in this article have been changed to protect their identities.

MUMBAI, India — Three teenage girls pull up chairs and form a semi-circle around me. Sabeena, whose pigtails and wide eyes make her look younger than her 15 years, carries a bowl of grapes and offers them to me. No, no, I tell her, I’m fine. “Take one,” she insists. I oblige.

Her friend, Amrita, also 15, tells me she is in her last year of high school. How long have you lived at this orphanage, I ask.

She smiles and puts her hand over her mouth. “One second, no?” she says and runs into the kitchen to ask the correct English word from Sister Shanti Remedios, the sister-in-charge of the HIV section at St. Catherine’s Home in Mumbai.

Amrita runs back and jumps onto her seat: “13 years.”

I try to ask the girls about life in the orphanage and living with HIV. I ask where they will go once they turn 18 or 19 and must move out. They do not want to discuss it.

“Which Hindi movie is your favorite?” Sabeena asks me.

“Have you seen Slumdog Millionaire?” asks Amrita.

She didn’t like it.

“I like it,” Sabeena says, and the girls laugh together.

All three lost parents to AIDS and are now not only living with the HIV virus, they are living a long time.

“When we began this home 14 years old, they said [the girls] wouldn’t live to two years. When they got to two, they said they wouldn’t live to five years,” says Sister Shanti. The girls miraculously kept living and living, and now the ones who arrived as infants will soon be young adults.

As children in India live longer with HIV than was ever expected, Indian society must grapple with new challenges as these orphans transition into adulthood.

Groups working on AIDS in India have recently put the issue of HIV-positive adolescents on their agenda, says the chief of UNICEF’s HIV and AIDS Unit Ivonne Camaroni. UNICEF is now planning to assess adolescents’ needs and what types of support they require.

The issue has not been well covered in the past, she says, because only now are a large number of HIV-positive children in the global community growing up and requiring their own unique services. Plus, India has in the past been focused on high-risk groups like sex workers, and adolescents probably were not prioritized, she says.

While young people all over the world face obstacles as they age out of foster care systems, girls in India face additional challenges related to Indian cultural beliefs about single women and stigmas against people with HIV.

When the quietest of the girls, Pia, was three years old, her HIV-positive mother committed suicide. Pia saw her mother taken to a burial ceremony where bells were rung. For years afterwards, every time Pia heard bells from a nearby temple, she would scream and cry, Sister Shanti says.

Pia received counseling at the orphanage and has recovered from the trauma. The orphanage also taught her how to live with HIV. She takes vitamins daily and gets treated when she comes down with a cold or other illness. Pia does not yet need antiretroviral drugs, Sister Shanti says.

Pia would stay with her friends at the orphanage if she could, she says as she nervously pulls on her necklace, but she is not frightened about moving out. She wants to work as a nurse and says she will find an apartment or hostel for young women.

About 2.5 million people are infected with the HIV virus in India, representing about half of Asia’s HIV prevalence, according to UNAIDS. Of those, about 970,000 are women and 90,000 are children.

One of the biggest challenges HIV-positive girls will face as they transition out of orphanages is finding housing, say child advocates. Most young women in India never live alone as they go straight from their parents’ house to their in-laws’. Landlords often refuse to rent apartments to single women because they or tenants worry the women are involved in shady activities like prostitution.

Mumbai also has a severe shortage of affordable housing, and the young women may be forced to live in unsafe areas with no privacy or access to services, says Pramod Nigudkar of Committed Communities Development Trust (CCDT), which serves marginalized children and adolescents including those with HIV.

While there has been much improvement, there is still significant stigma against people with HIV in Indian society. If landlords or employers know the women’s health status, they are likely to refuse them an apartment or job, says Sara Lizia D’Mello, the director of CCDT.

“All single women are looked at with suspect,” she says. “And then if HIV positive — it’s total isolation.”

The advocates worry the young women will try to hide their HIV status due to the stigma, causing them to be reluctant to go to the doctor when necessary and possibly not tell sexual partners about their status.

The girls at St. Catherine’s Home express different levels of concern about their future once they leave the orphanage. Sabeena, who was deathly ill before starting antiretrovirals, says she is frightened about leaving. If she gets sick now, Sister Shanti gives her medication and Vicks. When she leaves, she says, she does not know who will take care of her.

The two other girls do not know sickness like Sabeena does. When Pia is asked what happens if she needs medical treatment, she says confidently: “I will not get sick. I will eat well and not get sick.”

The girls rejoin their friends for lunch, and Sister Shanti says: “They have a lot of hope for the future. We have never told them they have a short life.”