Government treatment for HIV-positive children lacks essential support services and gives counselling a complete miss even though NACO guidelines on paediatric treatment give detailed information on counselling by healthcare providers. Sandhya Srinivasan enumerates some of the problems NGOs and health workers face
After overlooking children when launching a programme to provide free antiretroviral (ARV) drugs to people with AIDS two years ago, the Indian government has finally started a paediatric programme.
As of August 2007, it was serving 6,808 children out of an estimated 90,000 children with HIV and AIDS, according to the National AIDS Control Organisation (NACO). How many of the 90,000 are in immediate need of ARVs is not known.
But numbers are just one part of the story. Non-government organisations across the country are concerned about the government's focus on medical treatment alone without taking responsibility for all other essential support services that are needed.
"We are talking, for instance, about children living with their grandparents because one or both parents is dead," says Meena Seshu of Sampada Grameen Mahila Sanstha or Sangram, an HIV prevention, treatment and support organisation working in the state of Maharashtra.
"We need a structured intervention in the hospitals," says Seshu. "People often travel from a distance and the (government) programme can't even ensure that they get a meal at the hospital. Children travel from far away, they need a meal at the hospital, but no one is thinking of that."
"The family is impoverished and cannot invest in these children; the government is not dealing with the situation and NGOs are left to fill the gap," she says. Sangram helps 103 children access ARVs from the local hospital in the town of Sangli.
The lack of counselling services is by far the biggest problem cited by NGOs.
"Mothers are 'counselled' and they give consent for treatment - we don't talk to the children," says Dr Alaka Deshpande, head of the department of medicine at JJ hospital in the city of Mumbai, where ARVs were first introduced in government services.
How do children learn about their illness and treatment?
"We leave this to the mothers," says Deshpande, although NACO guidelines on paediatric treatment give detailed information on counselling by healthcare providers.
For instance, children are meant to be informed of their status in language appropriate to their level of understanding; they should be told about the history of the illness and to be prepared for what to expect, as also about the need for sticking to treatment regimen. However, government programmes everywhere seem to leave this to NGOs.
"We have a good rapport with the government centres," says Jaya Tiwari, who works with children at the Naz Foundation in New Delhi. "But we're struggling with counselling. How to disclose to children? How much?"
Most NGOs working with children with HIV and AIDS have had to come up with their own counselling services as the government's voluntary testing and counselling centres are inadequate to deal with the task.
"We start by helping the parent disclose his or her status to the child," says Mughda Wadivkar, assistant director at the Committed Community Development Trust in Mumbai.
"Children are told as much as they can absorb, and in the right way. You have to tell them how to take care of themselves, give them role models.
"If a child is to be put on ART there has to be further counselling. They should understand that it is not a cure, that it must be taken lifelong. They must commit to visit the centre every month, to adhere to treatment, to report side-effects."
The importance of a child-centred approach was emphasised in interviews across the country.
"Children with HIV need a specialised and comprehensive approach," says Dr Rumeli Das of the Child In Need Institute (CINI), Kolkata. "They can be in a state of shock, their economic condition may have changed, and they may have dropped out of school. A purely medical focus just cannot work. Their parents or guardians have their own problems - like earning a living - and there must be intensive counselling for adherence."
"For example, children get skin infections which can look bad, so they don't go to school. You have to think of all these things," says Seshu of Sangram.
"Many children affected or infected by HIV come from very poor, rural households, their parents may have migrated to a city to work in small scale industries there and return infected," she adds.
The Clinton Foundation coordinates the paediatric ART programme with NGOs and gives each NGO $150 annually per child under its care who is taking ART. This is to cover costs, such as travel, as well as the NGO's administrative expenses. A number of NGOs reported dissatisfaction with this system, and at least two say they plan to withdraw from it.
"What happens when the Clinton Foundation stops support?" says Dr Vinay Kulkarni, medical director of the Prayas Health Group.
"People find it difficult to go to government centres because of the limited timings which don't take their circumstances into account, the long waits that mean that children miss school," says Dr Trupti Darak, also of Prayas.
If this was not trouble enough, parents sometimes have to face rude staff. "Parents are anxious and keep asking to get their child put on treatment even if it is not indicated," says Wadivkar. "Some doctors can be rude, throw the papers back on their faces."
"NGOs are doing the work but they are not given full responsibility," says Kulkarni. "Children don't want to go through the government programme; they want to come to our centre where doctors talk to them."
"Without NGO support, there is nothing," Kulkarni adds.
(Panos 2010 Features)
InfoChange News & Features, March 2008