India's secret AIDS anguish

[Guest guest]

India's secret AIDS anguish

Mon Jul 4, 2005 10:17 AM GMT 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

stigmatized.

Tonight, the family has dressed up and traveled 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

neighbors 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 , an anesthetist 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, graying

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 center of Kottayam in

India's far southwest, they built a care center and turned a 170-

year-old royal hunting lodge into a sewing school.

CASS runs support groups, awareness campaigns and school sexual

health programs 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 laborer 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. "

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