Still live with stigma attached

The faces around her changed. She was thrown out of her parents' house after her HIV-positive status was disclosed to her neighbours by a relative.

The downward slide continues for some time till the 30-plus mother of a daughter found her resolve to fight back. Though she managed to restore a part of her life after years of struggle, Reena still has to battle it out almost everyday in her life.

“Nobody would have played with my daughter as they feared that she was also infected and playing with her would be dangerous. And we stayed at Alipore, very close to Bhawani Bhavan (state police headquarters), in the heart of Kolkata,” Reena said sitting cross-legged amid a group of positive women in a two-storeyed house in the northern fringe of Kolkata.

Stigma and discrimination still remain a part of life for numerous HIV/AIDS patients even after 25 years of detecting the human immunodeficiency virus in India. The information flow and advocacy from the government and voluntary outfits had a limited impact.

Fear component

“That's because stigma comes from three domains – fear, shame and judgment. Knowledge reduces the fear component, but pushes the other two factors – shame and judgment – up,” explained Samiran Panda, a scientist at the National Institute of Cholera and Enteric Diseases (NICED) in Kolkata.

In the beginning, people feared HIV/AIDS because of myths associated with the disease like transmission of the virus through mosquito bites. Flow of information in the last two decades bridged the information gap, no doubt, but it also brought new aspects to stigma like moral judgment and shame.

While never attending school and misconception about HIV transmission had more than twice the odds of having “fear related to HIV transmission through casual contact”, right knowledge about transmission did not act as a protective factor against judgmental thoughts – it is the other way around. “Since you know, how the disease transmits, the victims are often looked down upon,” Panda said.

The NICED team had identified two more issues, which are required to be addressed in the intervention package. They are (1) derogatory and demeaning language towards the positive people by neighbours (2) disclosure by health care workers about illness of people living with HIV/AIDS to others.

Reena and her friends at Society for Positive Atmosphere and Related Support to HIV/AIDS (SPARSH) bear testimony to both. “Even government hospitals in Kolkata throw out patients if they know their HIV status. We had to argue and fight with them to readmit those patients,” said Shyamal Kuilla, a HIV positive-youth-turned counselor.

Notwithstanding the social blockades, the problems associated with stigma has been further complicated because of the government's inability to bring out legislation criminalising stigma and discrimination against HIV/AIDS patients.  

Intervention planned

Even though the legal framework is still absent, the Centre plans to expand the scope of stigma-reduction interventions in the fourth edition of National AIDS Control Programme (NACP-IV), which will be launched in 2012.

“Our experiments in West Bengal villages show that creating a space for communication, which would encourage people to ask questions, discuss, think and change for a supportive environment in small groups such as youth club members or political party office bearers, is critical,” said Panda, who spent years researching on the behavioural aspects of HIV/AIDS.

India has close to 24 lakh HIV positive cases with a national prevalence of 31 per cent. A majority of the patients (83 per cent) are in the productive age of 15-49 years while children under 15 years account for 3.5 per cent of all infections, according to the latest statistics available with National AIDS Control Organisation.

“In NACP-IV, we propose to conduct a study to assess the various kinds of stigma that persist regard people living with HIV. This includes finding out more about self stigma, rural and urban stigma--all of these can differ from each other,” said K K Abraham, president of Indian Network for People Living with HIV/AIDS (INP+) and co-chair of National AIDS Control Organisation working group on stigma for NACP-IV.

Other NACP-IV recommendations include rolling out of grievance cells in all state AIDS control societies currently available only in six high-prevalence states, he said.

From the experience they gathered at two study sites – Howrah and Paschim Medinipur – the NICED team exudes confidence that properly-designed intervention programmes keeping all the three aspects of stigma in mind can help mainstream positive patients.