A Lifeline for Children with HIV

[Guest guest]

15th April Indian Express

A Lifeline for Children with HIV

" Amita and Rashmi argue about who will wear the

dupatta. Ashok , Riyaz and Chinku are immersed in

discussing India's fortunes against Australia in the

World Cup cricket match . Nandini takes my hand and

demands a ride in the car. Energetic shouts and

laughter from the other children resonate in the

background while I defer to Nandini's wishes - a

shade too quickly . As I walk to the car , hand in

hand with the animated six year old ,I can't help

but feel that appearances are deceptive … "

Amita, Rashmi, Ganesh, Bairam, Chinku and Nandini

are six of the hundreds of HIV /AIDS positive

children who are a part of the Freedom Foundation’s

huge community living in the in their ten units in

four states . They are also orphans and have lost

their parents , (in many cases their siblings as

well) to the AIDS scourge.

" When we talk of children with HIV/AIDS the

fundamental flaw is that there is no voice . What

makes the flaw even greater is that there doesn't

even seem to be the identification of a need. " The

concern comes from Ashok Rau, Executive Trustee of

Freedom Foundation a frontline HIV/AIDS care and

support NGO which is also considered to be the

largest in the HIV/AIDS sector.

If Rau's concern is legitimate, it is also an eye

opener into the double speak and the hypocricy that

characterises much of the ostensible crusade against

the disease. While millions of dollars have come

into the country under the garb of HIV/AIDS

assistance , there has been hardly a whimper , leave

alone gesture , meted out to children living with

HIV/AIDS. A recent UN AIDS study carried out in

October/November 2000 pointed out that children with

HIV/AIDS in India could be anywhere between 2 and

2.5 lakhs . Rau is quick to point out that this is a

" gross understatement " .

" We are looking at very alarming figures and trends,

" says Rau . Unfortunately , there seems to be no

evidence on the part of the state to even question

the implications that these statistics throw up .

Notwithstanding the sharp rise in the quantum of

people who are HIV positive the official policy

continues to be overwhelmingly biased in favour of

prevention rather than care and support . Rau admits

that the growth in statistics has perhaps brought

about some degree of change. But the crucial

question is : whether this is too little and too

late ? " The government did not even look at care

and support in the first phase (in the nineties )

….Now after considerable pushing and (after) the

World Bank has said that care and support is a good

thing…20 per cent of the budget has been allocated

for care and support…..but it is still only 20 per

cent. "

" The accent on prevention rather than care and

support has, not surprisingly, evoked brickbats from

several quarters . The millions of dollars that

flood the country would seem to have provoked a

mushrooming of NGOs working in the field of HIV/AIDS

prevention , but not achieved much else . In fact ,

many of these NGOs have reportedly, " only existed on

paper. " Others have been unable to utilise a

substantial quantum of the funds which they were

allocated. This has, in turn , raised questions

about professionalism and accountability . But

underlying the gross lack of transparency , there is

a human component which demands reckoning with . As

Rau questions , " what is the point of hammering

away at prevention when we do not have systems in

place ? " Moreover, care and support will mitigate

any kind of prevention effort you are going to

try…. "

Care and Support has remained the cornerstone of the

Freedom Foundation wing committed to HIV /AIDS

infected people since its inception in 1995. " We

got into care and support when people said we were

crazy to…. " reminisces Rau. " My entire (motivation)

came after I did my first awareness programme in

Mumbai in 1990….3 men came to me and admitted that

they were vulnerable . They asked me where they

should go …. I did not know where to send them or

what to do … "

Started by Ashok Rau , in 1992 as a centre to

provide intensive and effective treatment for

chemical dependents , Freedom Foundation has come a

long way . In November 1995 , it initiated a 25 bed,

short/long stay, day care centre for HIV positive

people . Today there are more than 1500 clients

using its services at its various units, while the

Care centre combines " out-patient services with a 55

bed residential care unit which includes a 10 bed

hospice to house and care for terminally ill

patients, all the Care units have various prevention

activities which also include a advocasy and legal

cell

The Foundation has also grown in other ways . Based

on a demand driven model , branches have opened in

Hyderabad , Bellary . Mangalore Siruguppa, Udupi,

Chennai, Goa will shortly have another centre . The

National Aids Control Organisation has recognised

the Freedom Foundation model of Care , as " the

ideal, low cost, community based model . The

Foundation has also has a massive pioneering PMTCT

(prevention of mother to child trasmission of HIV)

programme at Bangalore and Hyderabad which has been

functioning for the last one year.

Reportedly , The Freedom Foundation Bangalore is the

first HIV/AIDS home in the country . These , however

are not enough for the Freedom Foundation team . As

Rau points out , there are no more than eight to ten

centres across the country which provide residential

care to people with HIV/AIDS . Put differently, this

means that only about a thousand affected people can

avail of these facilities . This is shocking , given

the fact that the ordinary citizen is constantly

being bombarded by the fact that India is sitting on

an AIDS time bomb .

Moreover , despite NACO's blessings , care and

support continue to remain outside the centre of the

HIV/AIDS strategy . This is where the rub lies .

There is no tangible demonstration by the State to

undertake responsibility for people, leave alone

children who are HIV positive.

" The children's issue came up almost in the same way

as how we got into care and support …We had the

first child who was born here (in 1995) to a mother

who was positive …..The child did not make it , and

died after six months. During those six months we

went into a very intense process trying to figure

out if this child was positive, how and where and

when we could process things to ensure that the

child's needs are met …..There was nothing to be

found…

" We ran helter skelter to try and find an

organisation which would address the issue …there

wasn't a single one in the country . We realised

then that we were going to have many more people

coming to us we anticipated a similar response

……Sure enough we soon had the first family coming to

us where both parents and children were affected ….

" The increase in the number of HIV positive

children who required support led to the formation

of the residential care centre in 1998 . Today , the

Foundation in Bangalore houses many children ranging

from 18 months to 14 years . If the other units of

Freedom Foundation are brought into the picture the

figure will almost double by the end of March , says

Rau. . But he clarifies that in terms of support the

number is 136 children. In doing so, he

categorically affirms that Freedom Foundation is not

a one stop shop and that HIV/AIDS must be viewed as

a societal issue … However poor the environment may

be from where the child comes ,fundamentally we have

no right to disturb it . (So) we try and dialogue

with the parent …Is there someone in the family who

can help and who can be contacted… but when there

are definite gaps , when nobody has come forward ,

the Foundation steps in . "

" It has never been easy for Freedom Foundation to

address this issue from a practical and financial

point of view. " But then ,as Rau points out , there

is also an emotional perspective .. " It really

boils down to seeing this child and trying to

imagine what s/he will go through….. "

The centre for HIV positive children has brought

with it many challenges . " We still don't have

societal acceptance and permissibility in saying

that it is all right to normalise these children's

lives . " A case in point is education . It took Rau

and the Freedom Foundation team exactly a year and

eight months to get the children admitted into

schools . " I don't know how many schools we went

through before a school said ok . Today , we have

two schools that admit our children …. " Rau is

upbeat about the fact that the children have not

been admitted on a confidentiality basis . " The

schools know that these are positive children .

Despite this, they have come forward . "

While Freedom Foundation is grateful to these

schools , it hasn't entirely been a cakewalk . " In

one school somebody noticed the autorickshaw which

brought these children to school and which had our

name ….We got a call from the school asking us not

to send the children , because the parents of some

children were objecting …. It was a very

disappointing day for us …but the entire team met

and (initiated) a meeting between parents and

teachers to discuss the issue. The next day the

children went back to the same school . To us that

was a major achievement . We are so grateful to

those parents and teachers…. "