God's forgotten children . (The Week cover feature)

[Guest guest]

God's forgotten children

Dnyanesh Jathar

Cover feature: Infected by the virus, orphaned by AIDS and abandoned ?

by their families, these 'lost souls' need help Struggles in life,

for some, never cease. When Gauribai lost her son and daughter-in-law

to AIDS, she moved into her elder son's house with her orphaned

grandchildren. But constant harassment forced them to shift to her

ancestral house in Sangli, Maharashtra. " I had to feed them leftovers

thrown to the buffalo, " she said, battling tears. Gauribai was unwell

and she had little money to look after two growing children. So she

sent the little girl to her maternal grandmother's house. Each dawn

is a struggle for Gauribai. Her only source of income is her buffalo.

Asit, 13, another AIDS orphan, vividly recalls the day he lost his

father. " I was in class four. My mother died 10 days later, " he said,

without emotion. His grandmother Parvati couldn't control her

tears. " My daughter-in-law, too, was unwell. But she died of worry

and shock, " she said. Asit has a sister three years younger than him.

The two children are denied a playful childhood. They are too quiet

for their age. But Parvati is glad that the virus has spared her

grandchildren.

Parvati's and Gauribai's grandchildren represent a generation of

India's HIV-AIDS orphans, who are struggling for survival. There is

no official data on the total number of HIV-AIDS orphans in the

country, which observed World AIDS Orphans Day on May 7. The National

AIDS Control Organisation says that 60,000 children were born with

the infection in 2005. The ministry of health and family welfare says

1,67,078 cases of AIDS have been reported from 1986 to March 31 this

year. However, the figures given by senior World Bank official Aditi

Sen in a 2005 article are staggeringly different. Probably because,

as experts said, only 10 per cent of the infected are aware of their

status. Sen wrote that the number of children orphaned by AIDS in

India is approaching 2 million. The numbers far exceed that of any of

the African nations.

An HIV-AIDS orphan is a child who is below 18 years of age and has

lost a parent or both parents to the disease that attacks the

person's immune system and makes the person vulnerable to infections.

The AIDS orphans are further categorised as 'affected'

and 'infected'. In India, the number of infected children is believed

to be more than 2.5 lakh.

Meena Seshu, founder of Sangram, an NGO working with AIDS victims,

blames the governments for the lack of concern. " In Sangli alone we

have 791 HIV orphans on our records. We are just one of the NGOs

operating in Sangli, " she said. " The Central and state governments

are so obsessed with the larger picture that they are losing touch

with harsh realities. "

HIV and AIDS are brutal escalators of other cruelties that children

suffer, said Dr P. Manorama, founder of Chennai-based Community

Health and Education Society (CHES). " The children are often

exploited and abused, increasing their vulnerability to the

infection, " she said.

The death of their parents almost always leaves them homeless, with

the rest of the family ostracising them. Help, if any, comes only

from the maternal grandmother, said Manorama. And it is not easy on

the already ailing grandparent. Social stigma and lack of proper

treatment facilities aggravate the hardship. " Most grandparents are

forced to work in their old age to raise the children. We are

providing food and clothing to 32 such families in Sangli, " said

Meena. Some children also take up huge responsibilities at a very

young age to support siblings. But soon, they come face to face with

another loss: the death of their grandparents, leaving them orphaned

a second time.

All this has a bearing on the emotional and physical well-being of

the children. " Whether infected or affected, or orphaned, they have

psycho-social needs of their own, which are often neglected, " said

Manorama. She recalled incidents of children getting terribly upset

when teachers ask them about their parents, who are no

more. " Children need psychological support to deal with death, grief

and bereavement, and to face the impact of stigma and

discrimination, " she said.

Survival becomes a battle for the children when their HIV-positive

mothers are denied ration cards. Even schools shut their gates on

these kids. Sometimes financial constraints force children to drop

out, despite their desire to study. THE WEEK met an affected girl in

Maharashtra, who had to leave school after her grandmother fell ill.

She has preserved her uniform, hoping to return to school some day.

Ujawala Lavate, who runs Manavya, a home for HIV-AIDS orphans on the

outskirts of Pune, recalled how the villagers harassed kids admitted

to the zilla parishad school. " They would throw away the kids' tiffin

boxes, pour water on them and even throw stones at them. The teachers

remained mute spectators, " she said.

This prompted Ujawala's mother-in-law, Vijayatai Lavate, who founded

Manavya, to start a school in the same compound. Today, it has 53

affected and infected orphans, and receives requests for admission

every day. But finding teachers and other staff is tough, admits

Ujawala, as " people avoid coming here because of the stigma " .

The eldest inmate of Manavya is a 16-year-old boy, who arrived when

he was six. Most of the boys and girls gradually realise the gravity

of the infection they were born with. " They realise they have a short

life. Some try to enjoy it to the fullest while some remain angry and

despondent, " said Ujawala. " I remember one of the boys asking the

counsellor why God made him an AIDS orphan when there were so many

orphans in the world. " Thirty-seven children at Manavya receive anti-

retroviral therapy (ART) that inhibits replication of the virus. Two

of them have become resistant to the first line of ART drugs and will

soon need second line treatment. " At present ART is offered at eight

centres across the state and we will soon open four more in Kolhapur,

Latur, Solapur and Nanded, " said Prakash Sabde, project director of

Maharashtra State AIDS Control Society. " The mother to child

transmission in the state has come down from three per cent to one

per cent which is encouraging. "

Delhi-based Naz Foundation has a special home for infected children:

at present it has 32 children, the youngest being a two-year-

old. " Their nutrition, education, sports and general well-being are

taken care of by the home, " said Anjali Gopalan, director of the

foundation. " Besides, we take care of 300 families of affected

children. They are given financial support, counselling and medical

care. "

There are the few who have a supportive family, who train the

children to face life. Eight-year-old Chiranjeev Kalita is playful

like any other kid-the only special thing about him is that he takes

anti-retroviral injections. His parents are also HIV-positive. After

he was thrown out of kindergarten, the family moved to a new city and

put him in a small school where nobody knew about his HIV status. He

knew about his illness, its complications and treatment. " I don't

want him to get a shock later on. So I sit with him and watch

programmes on AIDS on television to prepare him for the harsh

reality, " said his mother.

Children are not the sole victims of AIDS stigma. Widowed women, who

are infected or affected, also face the social fangs of the virus.

Saath, an NGO in Latur, Maharashtra, is trying to build a network of

HIV-positive women in the district. Its founder Ziya Saiyed and her

sister Shanoo Shaikh were moved by the cruelties suffered by such

women. Shanoo said widowed wives of AIDS patients often plead with

doctors to give them a 'negative certificate' so that they and their

kids could live with the in-laws. When a baby is born to HIV-positive

parents, the family rushes to the doctor to check the baby's

status. " If the child is not infected the in-laws will accept them or

else the mother and child are sent back home, " she said.

In the hinterlands of Maharashtra, THE WEEK met some HIV-positive

women, who have kept the truth hidden from the world; so that they

and their kids are not ostracised.

The family and relatives torture the orphaned children by throwing

them out of the house and grabbing their property. Prashant Bhosale,

district coordinator of Sangram, has observed this trend in Sangli as

well. " They don't want the child but their greed does not allow them

to part with the child's share of wealth, " he said.

Shunned by all and left alone in the wicked world, the AIDS orphans

often fall victim to trafficking and sexual abuse. Three-year-old

Sirisha, who lost her parents to AIDS, had a brutal experience. She

was picked up by pimps and sexually assaulted. When they found out

that her parents had AIDS, they dumped her at Prajwala, a Hyderabad-

based NGO.

For Lavanya, her tale of torture was scripted by her mother who sold

her off for a few hundred rupees to pimps in East Godavari district.

Lavanya was raped repeatedly, till a few local people rescued her.

When she was brought to Prajwala, her body was bruised and the vagina

torn. Eight years old now, Lavanya is alive, thanks to ART drugs.

Dr Sunita Krishnan, founder of Prajwala, said that such children

often remain withdrawn and refuse to talk about their problems. " When

some children succumbed to the disease, the other kids inquired about

them. We told them they had gone home, " said Sunita. " So, they felt

that if they fell ill they would be taken to hospital and from there

sent home. And so, they stopped informing us about their illnesses.

We then talked them out of this fear. "

Andhra Pradesh has nearly 5,000 infected HIV-AIDS orphans; the number

of affected children could well be 20 times more. The state has only

four orphan care homes, each with 20 beds, and one care and support

centre in Hyderabad.

These children need help. Andhra Pradesh Chief Minister Y.S.

Rajasekhar Reddy, last year, announced plans to start a home for HIV-

AIDS orphans. But it has remained just a plan. In fact, till two

years ago, the government was not even willing to admit that affected

and infected orphans existed in the state. " Now they don't deny it

blatantly. But still there is no government outfit or policy that

looks after these children, " said Sunita. " The government does not

provide any funds to the organisations that look after these

children. "

The Central government, however, is doing its bit to provide better

medical care for AIDS patients. The number of government hospitals

offering treatment for AIDS patients has increased from eight in 2004

to 127 today. It is expected to go up to 250 by 2012, as per the

National AIDS Control Programme-III. Said Fr Tomy K., director of Bel-

Air Hospital in Panchgani and chairperson of NACP-III's technical

resource group on care, support and treatment: " By 2011, we will be

able to provide ART to 3 lakh patients. But this will not be

sufficient as by then the number of positive patients could be much

more than the current estimate. "

Most of those who are involved with the cause, however, feel that

these children should ideally grow up in their families and their

village. " There is a remarkable difference in a child brought up

within his family's support structure and those brought up in

institutions, " said Meena. " Those who grow up in families can cope

with the world whereas an institution is a protected atmosphere. In a

community care a child develops more skills, enabling him to lead a

more successful life. And, can we ever have enough institutions to

accommodate and care for all HIV orphans in India? " Sunita, too,

feels that " uprooting children and putting them in an institution is

not an ideal situation. " Fr Tomy feels that the extended families of

the orphans should be strengthened by providing them financial and

technical help.

M. Muthupandian, who manages CHES's HIV-AIDS Orphans' Ashram in

Chennai, said they always tried to take the children back to their

immediate family or friends. Said Unicef project officer Dr Devashish

Dutta: " Orphanages should be the last resort for AIDS orphans. The

interests of the child are best served when they grow up in a family

environment. The best way is to normalise them, which would remove

any stigma. "

The safety and comfort of the family is best, echo all, but are the

families listening? Today, over two million affected children live in

community homes run by NGOs, or railway platforms, or wander the

streets, or are abandoned in village fairs. They represent a

generation of 'lost souls' in a so-called upwardly mobile India.

As the nation enters the third and crucial stage of the NACP, it

needs a comprehensive child policy that looks at HIV-AIDS, its

dangerous ramifications and issues of care and protection of the

orphans. The government should wake up to the reality, and act, said

the experts, calling for a separate Children's Bill. The special HIV

policy should be brought under child protection. " We have been

lacking in adequate response but NACP-III has dealt with the issue of

orphans in much detail, " said Fr Tomy. " As a document it is flawless.

What remains to be seen is how much can you implement. NACO is even

thinking of constituting a separate technical resource group to deal

with the issue of HIV orphans and vulnerable children. "

The experts recommend that actions taken should be guided by four

strategic insights: 1. The need for urgency as the problem is not

tomorrow's but today's, increasing every minute; 2. A sense of

realism that recognises community-based responses as not only the

most desirable alternative, but also as the only economically

feasible alternative to provide the coverage needed. 3. The need to

go to scale at once with taluk-level care initiatives. 4. The need

for all key stakeholders to assume the most appropriate and cost-

effective roles possible, such as integration of programmes for

children affected by AIDS in all departments dealing with children

and starting an equal private-public partnership.

Do not deny them the right to life and happiness.

(Some names have been changed to protect identity.)

With Lalita Iyer, Payal Saxena, Srinivasa Ramanujam and Seema Hussain

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