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Stigma, Discrimination
and HIV in India

 

Only South Africa and Nigeria have more people living with HIV than India.. Complacency, ignorance and social conservatism are hampering efforts to curb the epidemic.

 

OUR car swings past the gates of India’s biggest HIV hospital. Throngs of men, women and children are heading up the driveway for appointments or to visit relatives receiving treatment in the single- storey brick buildings in the grounds of Thambaram hospital in the southern city of Chennai.

The government-run hospital was set up as a tuberculosis sanatorium in 1937, but since 1993 it has been treating people with HIV as well. Up to 800 people are seen a day, with many travelling from as far as 200 kilometres away.

“People come from across the state of Tamil Nadu as well as from the neighbouring states of Andhra Pradesh and Karnataka. We don’t turn anyone away. If there is no hospital bed, we let them sleep on the floor,” says the deputy superintendent, Dr Chandra Sekaran of Thambaram hospital.

Such tolerant attitudes, even among the medical profession, are rare in India’s socially conservative society where stigma and discrimination are rife. As we get out of the car in front of the Indian Red Cross Society centre, its project coordinator, Shanta Diaz, a vibrant woman in her late 40s, tells me that she has even had problems getting drivers to work for her.

“Two refused because they didn’t want to take me to the hospital every day and an autorickshaw driver was convinced that he would catch HIV as soon as he came through the gates.”

Care and nutrition

Diaz is a dietician by profession and her all-female team of seven is responsible for serving up to 200 meals a day, providing a third of the patients’ daily nutritional requirements. The specially made pongal, a mixture of rice and dhal seasoned with cumin and cashew nuts, is a big hit on the wards, and queues form for this tasty supplement to the ordinary hospital fare.

Every month the women give new arrivals up to 400 hygiene kits of soap, towels and toothpaste. But the Red Cross service is about far more than just distributing food and toiletries.

Emotional support and counselling are seen as key to helping patients rebuild their lives. “People always ask me, ‘How long have I got to live?’,” says Diaz. I ask, ‘How long do you want to live?’ I tell them that if they continue taking their antiretroviral treatment, eat well and take care of themselves, then their CD4 count will increase and they can continue to live life to the full.”

But she says that it is much harder for women. For 90 per cent of women, the only risk factor is that they are married. As soon as they are diagnosed, many are dumped by their husbands, who infected them, and shunned by their families.

Stigma

Malti, a frail woman of 25 who looks 10 years younger, has just learned that she has HIV. She sits motionless, her eyes downcast as her daughter, Vidhya, plays with the Red Cross counsellors. They managed to persuade her husband to have Vidhya tested, but he has now stormed off and it is unclear if he will return for the results due the next day. Malti will join the other women on the ward, where visitors are rare and the sense of despair acute.

Another woman, 24-year-old Lalitha, plays nervously with her faded green sari as she sits cross-legged on her bed. Her husband is alcoholic, regularly beat her and spent the little money he earned as a labourer on drink and sex.

Fighting back the tears she says that she feels like committing suicide and taking the lives of her children too.

“My husband has gone back to the village and told everyone that we have HIV. If I go back, I shall be an outcast. No one will speak to me or play with my children, and I am scared that when I have my period or cut myself I could infect them,” she says.

Many of the women have unwittingly passed on their infection to their children while pregnant or breastfeeding.

At the nearby children’s ward, Vasanti has sunk into a deep depression. Her 10-year-old son, Ravi, was diagnosed a week ago. She and her husband have been HIV positive for several years. He is now suffering from chronic diarrhoea and she has stomach pains. She says that the doctors in her home state of Andhra Pradesh had refused to give them antiretroviral treatment so she has come to Thambaram.

Medical wall of silence

In India, hospitals and doctors are sometimes reluctant to treat people with HIV. Stigma crosses class boundaries.

Bala comes from a solidly middle class background and holds a business degree in finance. He never thought he would be affected by HIV. However, he ended up on the palliative ward at Thambaram after a private hospital in Chennai refused to treat him. Suffering from stomach ulcers and severe weight loss, he now keeps a holy book under his pillow and says he will tell his friends to practise safe sex.

According to Dr Chandra Sekaran, many hospitals palm off their HIV cases here as they either don’t want to or don’t know how to treat them. He says stigma and discrimination in the family, at the workplace and among the medical profession are the biggest obstacles to curbing the spread of HIV.

With the epidemic yet to peak in India, Thambaram has started to run residential internships for doctors from across the country so that they will be better equipped to treat a rising number of patients in their hospitals and surgeries.

Scaling up

More than 2.5 million people live with HIV in India. The country is home to one in 16 people living with HIV worldwide. “It won’t be possible to control the global epidemic if it is out of control in India,” warns Mukesh Kapila, the International Federation’s special representative for HIV/AIDS.

On 1 December 2006, World AIDS Day, the International Federation launched a Global Alliance to scale up efforts to double the number of direct participants and beneficiaries in Red Cross Red Crescent HIV programmes in low- and middle-income countries.

HIV has risen to the top of the Indian Red Cross Society’s public health agenda. Care and support programmes such as the one in Thambaram are, however, the exception not the rule, with most of its work focused on prevention through youth peer education.

The Indian Red Cross currently trains young people in 520 schools and colleges in 13 of the country’s 600 districts in four high-prevalence states, Karnataka, Andhra Pradesh, Maharashtra, Tamil Nadu and the highly vulnerable state of Uttar Pradesh, to recommend abstinence, being faithful and using condoms as part of a general life skills course. Education programmes also reach factory workers and prison inmates.

Other National Societies in the region have increased the scope of their peer education programmes to include key vulnerable populations — the drivers of the epidemic — such as drug users, sex workers and migrant workers.

It is an approach that Kapila and many in the International Federation believe is the way forward. “If prevention work is to be effective,” he says, “it has to be about actively seeking out people before they get infected.”

“We have to move away from our innate conservatism and remember that dealing with the marginalized and stigmatized is part of our universal values. It is vital that National Societies become more proactive and start to address those groups that are driving the epidemic.”

On a recent visit to Thambaram, he suggested the Red Cross follow up more closely with people living with HIV after they leave the sanctuary of the hospital. Volunteers with legal expertise could, for example, help take on cases of unfair dismissal and discrimination in the workplace, while partnerships with non-governmental organizations representing people with HIV could increase the impact of the organization’s work.

“Thambaram,” says Kapila, “is a flagship project, but if the Red Cross is to be truly effective in India, it has to not only do more and better prevention and support work, but also find new innovative ways to fight the scourge of HIV.”

Indian Red Cross Secretary General Dr S. P. Agarwal says, “With greater resources, we could increase the number of schools and states we work in. This is where we can make a difference and we need to play to our strength, which is our large network of young volunteers.”


Staff at Chennai’s Thambaram Hospital, help people with HIV live life to the full.
©ALL PHOTOS: CLAIRE DOOLE / INTERNATIONAL FEDERATION

 

 

 

 

 

 

 

 

HIV in India

1.1 billion population
2.5 million people living with HIV
0.36 per cent of adults have HIV
7 per cent of adults with HIV are on anti-retroviral treatment
Source: UNAIDS

 

 

 

 

 

 

 

 

 

 

 

“…they can continue to
live life to the full”

 

 

 

 

Claire Doole
Claire Doole is a freelance journalist based in Switzerland. Names have been changed to protect people’s identities.

 

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