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India’s secret AIDS anguish

July 4, 2005

KOTTAYAM, India — “Manoj,” 8, and “Lakshmi,” 6,know there is something wrong with mummy and daddy. They knowit’s serious, but they have no idea what it is. Or that one daysoon it will probably kill their parents.

The Indian government says its campaigns are finallybeating prejudice and ignorance and slowing the spread ofHIV/AIDS in a country where the number of sufferers — 5million of them — is roughly the same as the world’s AIDScapital, South Africa.

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

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 ofearshot and stilling her husband’s fidgeting hand. “But when wefound out the children were not infected, we decided to live.

“We are praying that we can live until our children canlook after themselves. Then we can die peacefully — that’s ourhope.”

None of the family wanted their real names used for fear ofbeing stigmatized.

Tonight, the family has dressed up and traveled five hoursfrom home to secretly seek rice, some sugar and spices and ashoulder to cry on from a Catholic nun in a distant villagewhere no one knows them.

Both Shyamala and her husband “Padmanabhan” are jobless,and with no unemployment benefits in India, the only way theycan feed their children is to seek help from groups for AIDSvictims. “Even our neighbors and relatives don’t know we havethe disease,” says 33-year-old Shyamala, dressed in her finestsari, a shining brown, trimmed in green and gold.

To explain the free food and keep their secret, the coupletold their children they have come for a wedding celebration.

‘NOT EXACTLY ACCURATE’

Officially, the infection rate in the world’s second mostpopulous country is less than 0.1 percent, compared with around10 percent in South Africa. The government says its campaigncut new infections to 28,000 in 2004 from 520,000 in 2003. Butmany cases are not reported and the dramatic fall is disputed.

“Our numbers may not be exactly accurate,” Science MinisterKapil Sibal conceded at a recent AIDS conference, adding thatpoor healthcare and rampant disease means many die of othercauses without them, or anyone else, ever knowing they areinfected.

Those who can, stay away from government hospitals, wherereporting is compulsory, and go to private clinics or voluntarygroups for screening or treatment.

“We are seeing more and more infected people, particularlynew cases, coming to our clinics,” says Irfan Khan, of the NazFoundation, a leading HIV/AIDS and sexual health agency.

Experts say the number of people infected could quadruplewithin five years and the World Bank warns HIV/AIDS will becomethe single largest killer in India unless there is moreprogress 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 anesthetist who has just returned tosouthern India from 10 years working in South Africa, wasshocked 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 hegoes away. And in two years’ time, he writes and says ‘I wantedyou to get it’,” she says. “Sometimes, the wife is called yearslater to look after him on his deathbed and then finds out shehas it.”

Six years ago, Sister Dolores Kannampuzha, a feisty,graying Catholic nun from the Medical Mission Sisters, led agroup of women of all religions to form the Cancer and AidsShelter Society (CASS), with the aim of “reaching the unreachedwith love.”

Among the coconut palms of the rubber-growing center ofKottayam in India’s far southwest, they built a care center andturned a 170-year-old royal hunting lodge into a sewing school.

CASS runs support groups, awareness campaigns and schoolsexual health programs and gives care, medicine and food to thedying. But it has been a long battle against prejudice.

When hospitals would not touch the bodies of HIV/AIDSvictims, CASS bought its own fleet of vans as ambulances andhearses. When the church at first refused to accept victims inits cemetery, CASS persuaded the authorities to open acrematorium.

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

“Even now, the relatives are very much afraid to say whatthey died of,” she says, adding that some families still lie toavoid trouble. “It’s a terrible thing to lie,” she smiles.

It is late. Shyamala and her husband — who became infectedwhile working in Bombay as a laborer before they married in1996 — must begin the long trip home.

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

“This is like a tsunami — we are really suffering,” shesays. “These are not simply stories. These are living stories.For me, it breaks my heart.”




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