Dealing with the paediatric HIV-positive

[Guest guest]

Making the case against Aids with care

Labonita Ghosh, Saturday, August 05, 2006 19:30 IST

MUMBAI: Raju barely remembers the parents he lost to a " strange

sickness " when he was very young.

The seven-year-old lives in a small room on the terrace, hardly ever

meeting the aunt and uncle in whose care he is now. His meals and

medicines are passed to him from a distance.

All the Ahmedabad resident knows is that he's suffering from the

same illness his parents had.

There are an estimated 1.8-2.2 lakh children in India who are HIV-

positive, but they've been a largely invisible and neglected lot.

Now the National Aids Control authority of India (NACO) has pledged

to provide free treatment, nutrition, test facilities and general

care to about 10,000 of these children.

It has asked the Indian Association of Paediatricians (IAP) to draw

up a road map for doctors to deal with the paediatric HIV-positive

(children below 15 years who are infected).

" These guidelines will be given to all government-run anti-

retroviral (ARV) treatment centres which provide free drugs and

support to HIV+ people, so they know how to treat children, " says

IAP president Dr Nitin Shah.

IAP is currently organising workshops for doctors in eight high-to-

medium risk states: Maharashtra, Tamil Nadu, Andhra Pradesh,

Karnataka, Manipur, Nagaland, Gujarat, and West Bengal.

Children with HIV have been neglected not just in India, but the

world over. The UNAIDS Global Survey on HIV/AIDS 2006 says: " The

needs of children with HIV have been largely left out of the

research agenda. "

A 2004 Human Rights Watch report adds: " …HIV/Aids-affected children

are being discriminated against in education and health services,

denied care by orphanages, and pushed onto the streets and into the

worst forms of child labour… "

With a second generation of carriers emerging — either infected by

parents who didn't know how to prevent parent-to-child transmission,

or through unsafe blood transfusions — it's become imperative to

address this cause.

" The problem involves both infected and affected children, including

those orphaned or abandoned because they're positive too, " says

Sanjana Bhardwaj of Unicef.

To begin with, detection and treatment is a problem. There is a 30-

35 per cent chance of transmission to newborns from an infected

mother. That this can be brought down to two per cent with timely

medication is hardly known.

Moreover, children under 18 months can be tested, not with the more

common test but with the prohibitively-expensive Polymerised

Chain Reaction (PCR) test. An overseas foundation is currently

setting up 25 centres where PCR tests might be conducted cheaply.

Also, till recently, all drug combinations and dosages were only for

adults. " We would have to break a tablet into halves or quarters for

the child and guess the dosage, " says Augustine Veliath of Unicef.

" It was both inaccurate and dangerous. " Now that NACO has announced

its free-treatment mandate, pharma companies have started

manufacturing fixed-drug combinations in child-specific strengths

like " baby " and " junior " , says Dr Shah.

More compelling, however, is the psycho-social sensitivity required

when dealing with HIV-positive children, who are often turned out of

school, abandoned by families and left to fend for themselves.

Telling the child that he or she is positive is also

difficult. " There is no consensus on how old children should be

before they can be told they have Aids, " says Dr Sanjay Bavdekar of

KEM Hospital. By seven or eight, says Bhardwaj, they can sense that

they are very sick; by 10 or 11, some of them realise what's going

on.

Like Priya, 13, who lives with her two younger sisters at a shelter

in Bandra. After nursing her HIV-positive mother till she died,

Priya took charge of her siblings. It's a burden no child should

ever have to shoulder. It's too bad that the much-needed leg-up from

society has only come now.

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