November 2014

Orphaned by Stigma

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Stigma remains the single most important barrier to public action. It is a main reason why too many people are afraid to see a doctor to determine whether they have the disease, or to seek treatment if so. It helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why the AIDS epidemic continues to devastate societies around the world. —UN Secretary-General Ban Ki-moon

Renuca is a 4-year-old orphan, living in Miyagulda, a rice-cultivating town of southern India. She is HIV-positive, being cared for by her 28-year-old cousin, Kodati.

Renuca’s father had been a truck driver who was living with HIV, but did not tell his family about his HIV-positive status. After his first wife died of AIDS-related illness, he married her sister, Renuca’s mother. He did not tell his second wife that he had been infected with HIV, and she, too, contracted the virus. Renuca’s parents had two children together before both died of AIDS-related illnesses.

“[They] were tested but they did not take the ART [antiretroviral] medication reliably because they did not disclose their status to their family,” says a counselor with Solidarity and Action Against the HIV Infection in India (SAATHII).

Because of stigma and lack of information, many HIV-positive people remain reluctant to tell loved ones about their status or adhere to treatment, increasing the possibility that they will spread the virus. SAATHII—an implementing partner of the Elizabeth Glaser Pediatric AIDS Foundation—is working to eliminate stigma as they provide counseling for the prevention of mother-to-child transmission (PMTCT) of HIV.

Renuca’s mother transmitted HIV to her daughter during pregnancy, childbirth, or breastfeeding, the main ways that children become infected. PMTCT protocols would have likely blocked transmission of the virus, but the mother was not enrolled in treatment. Renuca’s 6-year-old sister is HIV-negative and living in a foster home, but the home will not take Renuca because of her HIV-positive status.

“[Renuca] is eligible for the drugs,” says her cousin, Kodati. “But it is difficult to say what will happen to her.”

The counselor agrees that Renuca’s future is uncertain, explaining that it is difficult for Renuca’s family to care for her. Her cousin, Kodati, is a day laborer and very poor. He also has children of his own.

“It is possible that after two or three years he will send her to a foster home,” says the counselor. “There are a lot of orphans like her.”

Over the past 30 years, an estimated 17 million children around the world have lost one or both parents due to AIDS, according to the U.S. Agency for International Development (USAID). In addition, 3.4 million children under age 15 are living with HIV. Orphans and vulnerable children are less likely to be in school, less likely to have access to healthcare, less likely to receive normal meals, and less likely to have their basic needs met. In addition, they face discrimination and fewer life opportunities.

In India, the Elizabeth Glaser Pediatric AIDS Foundation supports the Solidarity And Action Against the HIV Infection in India (SAATHII) in its work to reduce stigma, test for HIV, and prevent mother-to-child transmission of the virus so that children like Renuca can grow up healthy with parents and many opportunities for a successful life.