Needs of Children Affected by HIV/AIDS Neglected

[Guest guest]

Needs of Children Affected by HIV/AIDS Neglected

Lalitha Sridhar

CHENNAI, India, Dec 1 (IPS) - ''My name is Dinakar. I study is Class

VII. My parents are both having AIDS. My father is a rickshaw puller

and my mother works in other people's houses when she can. She is

mostly at home with high fever.''

''My father does not go to work three to four days in a week and when

he does, he says his legs ache badly,'' adds Dinakar, one of the

three skinny, malnourished children who spoke at a recent meeting

convened in this southern Indian city to draw attention to how AIDS

affects children.

''On days when he cannot work, there is no food. I am very scared. I

hope my parents live till I reach XII standard so that I can get a

job and take care of my younger sister.''

''I feel I can manage till my parents are alive. But I am very

scared. I hope they find a cure for AIDS quickly,'' says Dinakar,

crying by the time he finished speaking.

He is part of a Self Help Group called Roja Kootam, which means a

gathering of roses, for children affected by HIV/AIDS. Written

authorisation was secured from his parents to enable him to speak

publicly.

For more than 50 years, the Indian government's primary focus in

reproductive health has been on reducing the rate of population

growth. Only recently has there been some to effort at improving

broader reproductive health outcomes and preventing HIV transmission.

India's socio-economic compulsions, cultural myths on sex and

sexuality and a huge population of marginalised people make it people

vulnerable to the HIV/AIDS epidemic.

''The level of ignorance is still shocking. A school in Tiruppur

turned away two boys because of the suspicion that their father had

died of AIDS,'' says Dr Bimal , project director of AIDS

Prevention And Control Project (APAC) here in Chennai, capital of

Tamil Nadu state.

It took the intervention of activists, local officials and activists

to convince the school to take them back, but only after reassurances

that the father was not a victim of AIDS. Even the Child Labour

Committee, before which some cases of children with HIV/AIDS came up,

did not know what to do.

''It is not uncommon to find people who still believe that if you

touch a person or even see a person with HIV/AIDS, you will get

infected,'' said. ''This extreme stigma extends to the

children as well.''

The National AIDS Control Organisation (NACO) estimates that as of

2003, 4.58 million people in India are living with HIV. Currently,

the infection rate is estimated to be 0.7 percent in adults between

15 and 49 years of age. NACO's sentinel surveillance results show

that the infection has surpassed one percent among antenatal clinic

attendees in six Indian states.

The epidemic continues to shift toward women and young people, with

about 25 percent of HIV infections adding to mother to child

transmission and paediatric HIV.

Out of 55,764 AIDS cases in India, there are 2,112 children. Mother

to child transmission rate is 2.72 percent. Fourteen percent of the

total number of 4.58 million cases of people living with HIV are

children below the age of 14 years, in all numbering over 641,000.

Young people suffer in two ways: affected children, likely to be

orphaned because both parents are HIV-positive, and infected children

who are themselves victims of AIDS.

Based on birth rate and total population, it is estimated that there

will be around 10,800 children affected each year in Tamil Nadu

alone. Of these, 3,500 are projected to get infected.

Says Pinakapani Manorama, a paediatric gastroenterologist, and

founder-president of the Community Health Education Society (CHES),

which runs a school and home for child victims of AIDS: ''Many a

time, people believe what they see. Sometimes our staff are

questioned as to whether children can get infected with HIV.''

''The control of diseases such as cholera has been effective because

the communities have seen people dying. When a person has AIDS, he

does not share it with anyone,'' Manorama explains.

Explaining the needs of children affected or living with HIV/AIDS,

Manorama says: ''The needs vary from child to child. Child victims

need someone as a parent, providing parental love and support.

Children with HIV often have the same illnesses as children without

HIV, only these are more serious, frequent and difficult to treat.''

Says Manorama, ''We are almost afraid that poverty too is going to be

labelled a 'high risk' factor in AIDS.''

In a CHES study of 705 families affected by the epidemic, 76.8

percent of children live below poverty line, Sixty-one percent of

their parents do manual labour work, 19 percent of their mothers are

widows and 57.6 percent of the youngsters have both parents HIV-

positive.

Says Muthupandian, CHES deputy director: ''Sometimes, even parents

think that they can do nothing. Many think that children with HIV

will die soon. Many are unaware that basic paediatric care is enough

to manage most of the children infected with HIV.''

The majority of the children are infected through parent-to-child

transmission. Activists say that children are often infected in a

setting where more women are infected.

The needs and status of children affected by AIDS depends on their

parents' HIV status, and consequent health condition - whether the

parents are healthy, sick, alive or dead, whether parents have

disclosed their positive status, the type of family support and the

prevailing stigma and discrimination in the community.

Says : ''HIV and AIDS are brutal escalators of other cruelties

which children endure. Without their knowledge and permission this

epidemic has had greater impact on their present and future life.

They are young, unable to understand and have no participation either

in prevention or care.''

''The struggle to survive everyday overshadows attention and concern

about a virus that does not demonstrate any immediate harm,'' adds

.

Observations show that when a husband dies of AIDS, the mother is

also often living with HIV/AIDS and dies shortly thereafter, leaving

children as orphans. Girls are affected more than boys and even

infected boys are denied entry into families.

Most parents, even if they are aware of their terminal illness, do

not have the wherewithal to make alternative living arrangements for

their children before death.

Says Manorama, ''One of the most tragic consequences of HIV/AIDS is

its devastating impact on the emotional and physical health and well-

being of children. Frequently, however, these needs are neglected.''

Adults find it difficult to talk to children about such sensitive

subjects like sex, illness and death, thinking they ought

to ''protect'' children these.

''But this can create a conspiracy of silence and fear, or a

situation where adults fail to acknowledge that children are already

experiencing anxiety and pain and having to cope with these feelings

on their own,'' adds Manorama. ''Trying to keep information about HIV

and AIDS from children is difficult, if not impossible. It can also

have negative consequences. Children need counselling support.''

(END/2003)

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