HIV-infected children present their case

In a conference hall inside a heritage resort in Manesar on the outskirts of Delhi, the pleading voice of a young boy cuts through the silence. The scene is from a skit, scripted and staged by children infected and affected by HIV in India - a country of 5.7 million people living with HIV and AIDS. Set against the backdrop of a school somewhere in India, the drama draws upon the real-life experiences of many of the child actors who deal with stigma and discrimination in their daily life. According to the latest estimates by UNAIDS, 5.7 million Indians were estimated to be living with HIV in 2005 – the largest number in the world. The Indian government does not agree with the figure and pegs the number of HIV-infected in the country around 5.2 million. The difference is due to the fact that while India’s official data include HIV-infected people in the 15-49 age group, UNAIDS, for the first time, has also included those below 15 years and those above 49 years. While the storm continues to rage over the statistics, one welcome fall-out is the rise in interest about children living with HIV/AIDS in the country and their specific needs. In the play at Manesar, the school principal is unmoved by the pleas of the young boy diagnosed with HIV and expels him. The boy is miserable but does not take the ‘no’ as his destiny. Instead, he approaches a sympathetic community counsellor, who recounts his story. The counsellor convinces the principal that the child poses no threat to other children by listing the ways of contracting the AIDS virus. The principal apologises for his lack of awareness about the disease and convenes a meeting of his staff and students. The counsellor gets the opportunity to dispel the many doubts and myths surrounding HIV. The interaction sparks a change in everyone’s attitude towards the infected boy and he is welcomed back into the classroom and the playground. The skit, one among several, was part of the first ever ‘national consultation’ in which children affected by HIV/AIDS spelt out their expectations from the government and from society. Organised by Positive Women Network (PWN+) and the UN Children’s Fund (Unicef), it brought together 53 children, all below 15, from 10 states across the country. For 11-year-old Vivi, an AIDS orphan from a small town in Nagaland in northeastern India, this was a “super way” of making friends, learning new games and sharing common concerns, stories of heartbreak and hope. The event took place at an opportune time, as the Indian government is busy gearing up for the third phase of the National AIDS Control Programme. On the final day of the three-day consultation, the children divided themselves into groups and enacted short plays to draw attention to their concerns. But the consultation went beyond play-acting. “We are not an add-on to adults. Our problems deserve as much attention as those of the adults,” the children said in their first ever national statement presented to representatives from aid agencies, NGOs and government departments. To date, paediatric AIDS has not got the attention it deserves in the country, critics say. Critical gaps in policy and programmes include lack of early diagnosis, lack of a referral system, and lack of a care package specifically for children with HIV. For the children assembled at Manesar, the occasion provided a great opportunity to interact with a senior government official working for the National AIDS Control Programme and to hear first-hand what the government was doing for children infected with and affected by HIV and AIDS. Responding to the children’s concerns, the official said that the government was working with the pharmaceuticals industry on paediatric formulations and that it was also committed to making AIDS medication available at district level. Five days at a heritage resort far away from their villages and towns with ample opportunity to play was a welcome relief from their daily routine, but the child activists have set themselves more ambitious goals. On the cards are networks of Children Affected by HIV/AIDS (CAHA) in conjunction with PWN+ in the country.