India's secret AIDS anguish

by Terry Friel

KOTTAYAM, India, (Reuters)

"Manoj", 8, and "Lakshmi", 6, know there is something wrong with mummy and daddy. They know it's serious, but they have no idea what it is. Or that one day soon it will probably kill their parents.

The Indian government says its campaigns are finally beating prejudice and ignorance and slowing the spread of HIV/AIDS in a country where the number of sufferers - 5 million of them - is roughly the same as the world's AIDS capital, South Africa.

But there is no sign of change on the ground. Hospitals throw patients from their beds, employers sack them, their healthy children are cast out of schools, and, when they die, their families lie so they can bury or cremate them on holy ground.

And they can't tell the children.

"When we found out, we planned to kill ourselves," says "Shyamala", smiling as Manoj and Lakshmi play just out of earshot and stilling her husband's fidgeting hand. "But when we found out the children were not infected, we decided to live.

"We are praying that we can live until our children can look after themselves. Then we can die peacefully - that's our hope."

None of the family wanted their real names used for fear of being stigmatised. Tonight, the family has dressed up and travelled five hours from home to secretly seek rice, some sugar and spices and a shoulder to cry on from a Catholic nun in a distant village where no one knows them.

Both Shyamala and her husband "Padmanabhan" are jobless, and with no unemployment benefits in India, the only way they can feed their children is to seek help from groups for AIDS victims.

"Even our neighbours and relatives don't know we have the disease," says 33-year-old Shyamala, dressed in her finest sari, a shining brown, trimmed in green and gold. To explain the free food and keep their secret, the couple told their children they have come for a wedding celebration.

Officially, the infection rate in the world's second most populous country is less than 0.1 percent, compared with around 10 percent in South Africa. The government says its campaign cut new infections to 28,000 in 2004 from 520,000 in 2003. But many cases are not reported and the dramatic fall is disputed.

"Our numbers may not be exactly accurate," Science Minister Kapil Sibal conceded at a recent AIDS conference, adding that poor healthcare and rampant disease means many die of other causes without them, or anyone else, ever knowing they are infected.

Those who can, stay away from government hospitals, where reporting is compulsory, and go to private clinics or voluntary groups for screening or treatment. "We are seeing more and more infected people, particularly new cases, coming to our clinics," says Irfan Khan, of the Naz Foundation, a leading HIV/AIDS and sexual health agency.

Experts say the number of people infected could quadruple within five years and the World Bank warns HIV/AIDS will become the single largest killer in India unless there is more progress on prevention.

Discrimination against those with HIV/AIDS is not illegal. The government says it is working on a law to change that soon. It has been for more than a year now.

Dr Gigi Thomas, an anaesthetist who has just returned to southern India from 10 years working in South Africa, was shocked by the ignorance and stigma when she came back.

Equally disturbing were the attitudes of some men.

"The husband finds out, he infects his wife and then he goes away. And in two years' time, he writes and says 'I wanted you to get it'," she says. "Sometimes, the wife is called years later to look after him on his deathbed and then finds out she has it."

Six years ago, Sister Dolores Kannampuzha, a feisty, greying Catholic nun from the Medical Mission Sisters, led a group of women of all religions to form the Cancer and Aids Shelter Society (CASS), with the aim of "reaching the unreached with love". Among the coconut palms of the rubber-growing centre of Kottayam in India's far southwest, they built a care centre and turned a 170-year-old royal hunting lodge into a sewing school.

CASS runs support groups, awareness campaigns and school sexual health programmes and gives care, medicine and food to the dying. But it has been a long battle against prejudice.

When hospitals would not touch the bodies of HIV/AIDS victims, CASS bought its own fleet of vans as ambulances and hearses. When the church at first refused to accept victims in its cemetery, CASS persuaded the authorities to open a crematorium.

"It took us two years even to be allowed to cremate the bodies," Sister Dolores says. Then the crematorium broke down.

"Even now, the relatives are very much afraid to say what they died of," she says, adding that some families still lie to avoid trouble. "It's a terrible thing to lie," she smiles.

It is late. Shyamala and her husband - who became infected while working in Bombay as a labourer before they married in 1996 - must begin the long trip home.

Sister Dolores asks them to call from a public phone to let her know when they reach safely.

"This is like a tsunami - we are really suffering," she says. "These are not simply stories. These are living stories. For me, it breaks my heart."