The sting of HIV stigma

It set off a series of events when it was known that a young pregnant woman who came for treatment at a government hospital in Sattur was infused with HIV-infected blood last December. After it created a furore among experts, activists and public alike, and the Madras High Court took a stern note of the matter, the State government took responsibility of it and offered her a house and agovernment job.

Welcome as they were, those measures perhaps seem little to her – as she informed the Madurai bench of the Madras High Court during the proceedings of a public interest litigation, her husband’s behaviour towards her changed after the incident. Though he was counselled for many months after the incident, he was not only disinterested in her, but even denied her the right to meet their elder daughter. Relatives and even close friends preferred to avoid the family since then, he told the authorities at Virudhunagar Government Hospital.

“They were offered a house and she is a government employee. I personally offered him a job but he did not show interest in his wife. Their elder daughter was admitted to a good school and other demands are being considered. However, he wants separate compensation and has not returned to her despite sufficient counselling since the diagnosis,” said Dr R Manoharan, joint director of the hospital.

This is not an isolated case. Despite a decline in the prevalence of HIV in the State, the stigma seems to remain the same. Those infected with the virus are often abandoned and suffer discriminations on various fronts, and are left to depend on non-governmental organisations and others who volunteer to help them with support including offering livelihood.

While the Tamil Nadu State AIDS Control Society (TANSACS) had taken action to counsel the family members in this case, what is required is an intervention in the society to address the stigma that is associated with the virus.

Noori, a transwoman and founder of SIP Memorial Trust, had to leave home when she was only 13. Later in 1987, when she was 24, Noori was diagnosed with HIV, and felt the abandonment once again. “After being diagnosed with HIV, my suffering doubled. But since then, I have survived for more than 32 years. So I thought of helping children to lead a normal life as I did,” Noori said.

Thus formed SIP Memorial Trust in 2005 to take care of abandoned and homeless children infected with HIV. What was started with one child now has 45 children who are residents of the home she is running. Apart from the home, she also takes care of around 100 children outside. 

Such children are either disowned and sent to orphanages, or, in worst cases, left in dustbins. Noori had once found a two day-old child with bloodstains left in a dumpster. “Next to the child was an anonymous letter in Telugu, stating that the child was responsible for mother contracting HIV, which cannot be true. Such incidents show that a lot needs to be done to create awareness among the public about HIV and the stigma it has in the society,” Noori said.

Shelter Trust is a home for children abandoned by the family after they had contracted HIV. It provides shelter and medical needs of 47 HIVpositive kids.

“One of the children who I adopted had seen six HIV related deaths in his family, and was the lone survivor. After I adopted him and took the child to my office, people who regularly had lunch with me started avoiding me and chose to eat at different times because the child was sitting next to me,” recalled Solomon Raj, the founder of the trust.

Solomon has 11 staff members who too are HIV positive and could not find any other employment as they were looked down upon. “In doing so, I provided a home for these women who were suffering from the disease themselves, while the children got caring mothers who understood their condition,” he added.

For those living with HIV, is a struggle to find a place to stay or a job to support themselves, while school managements are reluctant to admit HIV positive children. “When Suniti Solomon started YRG Care in 1993, an organisation that works to create awareness and provide clinical care for HIV patients, a large number of landlords refused to provide office space,” said SK Satish Kumar, trainee manager, YRG Centre for AIDS Research and Education (CARE).

Such is the stigma that even parents do not tell the children about their HIV status. “In one of our camps, there was a child who was beaten up by his peers in the neighbourhood when he tried to join them while playing. Because the child’s father died of HIV and everyone in the locality knew that the child was HIV positive,” said Satish.

Another example is Aditya Pillai (name changed), who was diagnosed with HIV a few months ago. He accepted his medical situation and was open about his HIV status. He started participating in awareness camps for HIV patients and mentioned his example as healthy individual living with HIV. However, once his house owner got to know about it, he made Aditya vacate the house immediately and it took another several months to find another accommodation. Over the years, the stigma has indeed reduced. But the society is yet to accept those with HIV completely, say activists and doctors.

“The patients have begun considering it like any other chronic disease such as diabetes or hypertension, and started accepting themselves. We counsel them and notice that they are accepting their bodies even after they are diagnosed with the infection. All the patients come for their medications regularly and they want to live. These are some commendable changes. But the stigma continues and affects their everyday life and their personal life due to the way others treat them,” said Subha Lakhsmi, a counsellor at an antiretroviral therapy (ART) centre in Perambur.

TANSACS officials said that the prevalence of HIV in the State has reduced and awareness programmes and counselling are in place. However, the stories of these people show that they still lack acceptance in the society.

“There have been no cases of mother to child cases in past one year as we could prevent the transmission successfully with ART drugs. The prevalence has reduced to less than 0.27 per cent because of awareness and prevention have increased. The awareness programmes, counselling services and treatment facilities are in full swing. We are sure that the scenario will change,” said Dr K Senthil Raj, projectdirector, TANSACS.