Meenakshi, who works as a health promoter with the LoveLife Society.

Indian women living with HIV/AIDS face heavy stigma - and here’s what needs to change

Outside of healthcare, Indian women living with HIV/AIDS continue to fight against bias and routine discrimination. Their healing and hope comes through collective resistance against a society that sees them as impure.

Each day, 33-year-old Meenakshi Yadav goes to slums and bylanes of Delhi’s low-income neighbourhoods to talk to people about HIV/AIDS. In her line of work as a health promoter, she often meets women living with HIV who have been ostracised and shunned by society due to their disease. Women living with HIV in India are often taunted, abused and viewed as women with so-called loose morals.

Meenakshi knows how these women feel, because she used to be one of them.

According to the latest available data from the World Health Organization, there are 2.5 million people living with HIV in India. Half of them, or around 1.2 million, are women.

Women living with HIV in India not only have to fight an uphill battle of patriarchy and gender violence, they also have to dodge allegations of promiscuity. In India, people with HIV can access medical treatment and antiretroviral therapy (ART) which is essential for the treatment of HIV, for free at government-run hospitals. For women who try to access these spaces – exclusion, discrimination and being judged are common themes.

Meenakshi, formerly employed at a poorly equipped government hospital, regularly cleaned beds and surgical areas without gloves due to their unavailability. Her declining health led to an HIV test which came back positive. Her husband wrongly accused her of infidelity, despite her explanation of the hospital's inadequate resources. Diagnosed in 2011, she had worked there for four years.

In November 2022, a pregnant woman in labour in Firozabad district in the northern state of Uttar Pradesh, was left screaming in pain. Hospital staff refused to touch her after finding out she was HIV positive. Despite labour pains, the hospital refused to admit her due to her HIV status. The woman delivered the child on the streets, who died the next day.

Despite legal protections like The Human Immunodeficiency Virus and Acquired Immune Deficiency Syndrome (Prevention and Control) Act 2017, which prohibits discrimination against people living with HIV, activist Mona Balani faced discrimination in healthcare settings due to her HIV status. “I had a wound which required dressing, I saw the nurse tending to me without gloves and I requested that she put gloves on since I have HIV. The nurse panicked and ran away and told me that people like me aren’t welcome in the hospital,” she recalls.  

Similar experiences occurred at a dentist's office when she requested proper precautions.

Dr Anant Bhan, a public health researcher, says this is an ethical violation by healthcare workers discriminating against people living with HIV. “Women might face a higher level of stigma and would be able to negotiate a life the same way as a man living with HIV. Healthcare providers should know about HIV precautions and go through sensitisation. It’s important that institutions enforce these policies.” 

Meenakshi empathises with newly diagnosed women, reaching out to sensitise families, though only a few grasp the challenges. For years, she kept her HIV status hidden until her husband disclosed it during a dispute: the allegations of promiscuity came raining down, once again. 

Balani and her husband were diagnosed with HIV in 1999. "When we used to go to the doctor, they would ask invasive questions like if my husband was sleeping around, or cheating on me," she recalled. Balani's husband died from HIV/AIDS in 2005 and soon found herself in HIV prevention activist circles. Since then, she has found misconceptions and misinformation fuelling the discourse around HIV, which further makes women hesitant to know more about the condition.

The allegation of being a sex worker, even if untrue, taints a woman’s character and dignity. Balani, who now works with Alliance India, an NGO that works on HIV/AIDS prevention and awareness, looks back with despair. “There is a big gap in the amount of knowledge women with HIV have about their own sexual and reproductive health. Many counsellors misinform people and tell them their sex lives are over after being diagnosed with HIV,” she says.

For young women newly diagnosed with HIV, a new fear looms over their heads.  “Many of them are scared, and ask if the virus will kill them, how to manage their sex lives or even discuss it with friends,” said Balani. Balani and Meenakshi, part of organisations like Alliance India and Love Life Society, spearhead support groups for HIV-positive women, offering solace and information. However, rampant stigma leads to disturbing statistics - 81% report stigma, 41% face discrimination, and 50.3% endure domestic violence as a result of having HIV.

For people living in countries beyond India, like the United States or Australia, contracting HIV is no longer the death sentence it once was, and partners of those living with HIV can take daily PrEP to lower the chances of getting HIV themselves.

Beyond healthcare, Indian women living with HIV/AIDS continue to fight against bias and routine discrimination. Their healing and hope comes through collective resistance against a society that sees them as impure. “I turned my HIV status, which was my biggest shame, into my strength,” said Meenakshi.

“I want to challenge existing stigmas, so we can live through a better future.”