Skip to content

Stigma still keeps mothers and children with HIV in India from accessing treatment

Despite strides made in reducing HIV prevalence and stigma, many mothers still hide their HIV-positive status from their families – with serious consequences for their children as well

Stigma still keeps mothers and children with HIV in India from accessing treatment
A World Aids Day event in Kolkata in 2022. Across India, community activists battle to counter deep stigma and provide support to those who are HIV-positive, including through the prevention of mother-to-child transmission. Photo: ZUMA / IMAGO

WHEN A 14-YEAR-OLD from Uttar Pradesh developed a rash that spread all over her body, her grandparents initially thought it was an allergic reaction. When it did not subside, they took her to a spiritual guru who they hoped would cure her by warding off a supposed curse.

None of them had any idea that the 14-year-old was HIV-positive. She had contracted the virus from her 38-year-old mother, who was unaware of her positive status at the time her daughter was conceived. “I was devastated,” said the mother, who believes she was infected by her husband, a contract worker based in Africa. “I could never gather the courage to tell my daughter that, because of my ignorance, she is suffering.”

The mother, who often works 12-hour shifts on construction sites and road-building projects in Mumbai, wants to hide the truth from her family and the wider community as long as possible. “People already call me names in the village because I am working alone in the city,” she said, adding that she is afraid that her family would be ostracised if anyone comes to know about their HIV-positive status. “I don’t want my child to die with the shame of this burden.”

The teenager from Uttar Pradesh is one of a growing number of children and adolescents in India living with HIV, some of them unaware of their HIV-positive status. In a study published by the US-based National Library of Medicine, the medical researchers Bhanu Mehra, Preena Bhalla and Deepti Rawat write that 35 percent of HIV cases in India are reported from the 15- to 24-year-old age group. They also note that data on HIV prevalence among adolescents who fall outside this age band is less widely available. There are more than 81,000 HIV-positive children in India, accounting for 3.5 percent of total infections, according to India’s National Aids Control Organisation (NACO).