Children of a lesser god

A surfeit of funding, piety and programmes for children and HIV/AIDS and nothing much to show at the end

Akash Bisht & Trina Joshi Delhi

Saraswati, a nine-year-old girl, lost her parents and a younger sister to AIDS when she was only three. Labelled untouchable at that tender age, she was left to attend to her own bathing and feeding. She was not allowed to play with other children or attend school. "If you touch me you will die, that is what my grandma says," Saraswati would yell when someone tried to touch her. When she developed skin infections her grandmother brought her to Freedom Foundation, a Bangalore-based care home for HIV+ children, who gave her the necessary medical and nutritional attention. Saraswati was fortunate to be brought here. She is one of very few children in India able to avail of institutional assistance.

It is difficult to comprehend the impact of AIDS on children. According to latest figures given by UNICEF there are 5.1 million people living with HIV of which 2.2 million are children. Whereas UNAIDS figures indicate that more than 1.7 million children are HIV/AIDS affected. Rather than serving any purpose, these figures create confusion as every organisation brings out its own version of numbers of people living with HIV/AIDS. "Statistics can create controversies and everybody wants to play safe with them," believed an official in NAZ Foundation, an orphanage for HIV+ children, when questioned about the average number of HIV+ children in an affected family.

One prominent reason for this uncertainty is that AIDS is often assumed to strike only adults. HIV is commonly believed to be transmitted either sexually or through injectable drug use so people do not really think of it affecting children. "The world still thinks of AIDS as an adult illness," observed President Abdul Kalam while launching an AIDS awareness programme recently. These children are the missing faces of AIDS neglected by government and NGOs.

India's HIV/AIDS policy has glossed over children. UNICEF pointed out, "children are being overlooked when strategies on HIV prevention and treatment are drafted, policies are made and budgets are allocated. And investments in prevention continue to be pitifully inadequate." Government and internationally funded prevention programmes have been targeting adults such as sex workers, truck drivers and drug users. NGOs believe that the government has made little efforts to find out the true numbers of children living with or affected by HIV/AIDS, and state officials downplay the number of children living with HIV/AIDS in their states. The procedure for collecting these numbers is rudimentary.

The government has adopted sentinel surveillance, a method of trying to identify the prevalence of HIV with specific numbers within a specific period of time, and this includes testing the blood and trying to find out the percentage only among certain populations: sex workers, STD patients and truckers. In the general category, only pregnant women are being tested. This method has limitations and desperately needs a face lift in order to get the accurate figures. " We were asked to do the sentinel surveillance in Pondicherry. In the surveillance report we included already positive individuals and new infections. These already positive people were accounted for in the last sentinel surveillance and are again mentioned in the new report. So this does not give us an idea of the number of new infections reporting.

It only reflects the trends and thus the actual figures are hard to find," explained Shyamala Ashok, CEO, Society for Development, Research and Training (SFDRT), Pondicherry. Adding to this, the country has no national information system to collect information regarding HIV tests from the private sector, which provides 80 per cent of health care in the country.

Of late, government and NGOs have begun to reach out to infected/affected /vulnerable children by initiating various programmes that address the problem at the grassroots level. The government has designed many new programmes with international agencies to address the needs of these children and some of them are already in action in different parts of the country. The first step was to design programmes keeping in mind the three categories: infected children (who have contracted HIV/AIDS from parents, sexual violence and exploitation, transfusion and substance abuse); affected children (who endure hardships in the permanent absence of one of their parents); vulnerable children (street children, trafficked children, children in care and protection institutions, children of commercial sex workers among others in whom susceptibility is high). The implementation follows according to the needs of these children.

UNICEF has recently launched its "Unite for Children" campaign which focuses on putting children affected by AIDS at the centre of the HIV/AIDS agenda and makes sure that the voices of children and young people are heard on the issues that affect them. USAID has also launched multiple projects-"Asha" (hope) in Hyderabad, "Bridges" in Pune and many more-to ensure access to community-based care and support services for infected and affected children of HIV/AIDS with the help of government.

But certain questions that arise are: how effective are these programmes and are they reaching out to the children who need them most? The problem has been that all donors mainly throng urban and semi-urban areas. According to an USAID official, "Our programmes are functioning in the urban areas only." "Most of the funds received go to the same recipients and the rural sector is completely left out. That is because people do not want to know about it," asserted Ashok. "If we go by funds pumped into India by different agencies we should have been an AIDS-free nation by now."

Most of the funds that are granted by bilateral or multilateral agencies are confined to prevention and awareness. This makes it even more difficult for these organisations to take appropriate care of these children.

But it is not only lack of funds that can be solely held responsible. There is major discrepancy in the number of children that urban-based, funded NGOs claim to help and the number of children they actually provide medical and nutritional help to. An official in NAZ Foundation claims that it takes care of 300 HIV affected families and on an average a family has 2-3 HIV affected children. By their own numerical logic, there should be somewhere around 600-700 children whose needs need to be addressed while there are only 35 children taken care of by NAZ at its home care centre in East of Kailash, Delhi. What is the criterion for selecting these 35 and what about the rest?

There does not seem to be any alternative vision to providing institutional support or to providing extension services (care and support) to these children. The government too focuses on providing medicines, nutrition, education and training to these children rather than on enabling community-based emotional and psychological support. This approach cannot deal with the numbers involved. This is in the cities. The fate of rural India is not difficult to imagine.

While unveiling the latest UNAIDS report on AIDS, Peter Piot, UNAIDS Executive Director, said "In India, of the 6,00,000 people who need anti-retroviral therapy, only around 1,00,000 have access to them, often at a greater cost to themselves and their families." The mother-to-child transmission (MTCT) accounts for the huge majority of children who are infected with HIV. They may not necessarily be infected in the womb during pregnancy and may come into contact with mother's infected body fluids and become infected this way. Studies have proved that courses of ARV treatment given to mother and infant can radically diminish the risk of MTCT with almost no significant long-term effects on the child. Because most of the population does not have access to ARVs, it becomes difficult to avoid MTCT.

Complicating the scenario is that majority of those living with AIDS are poor. Their children are pressed into earning and are vulnerable to risk. In any case AIDS is still considered taboo. There is discrimination. "I have heard multiple instances in our hospital where doctors have refused to treat an AIDS patient. Doctors do not touch pregnant women and often ask them to leave the hospital and abort the baby," said an official in Safdarjung hospital.

A good start would be in assessing the numbers of children involved through the length and breadth of the country. The annual numbers vary so much as to draw scepticism about the ability of the authorised national and international agencies to first identify and then deal with the issue.