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Going beyond mere treatment for children affected by HIV/AIDS

November 22, 2011

World AIDS Day is observed on 1st December every year and it is an opportunity for people worldwide to unite in the fight against HIV, show their support for people living with HIV and to remember the people who have died. World AIDS Day was the first ever global health day and the first one was held in 1988. This day is marked by jathas, public functions, seminars and discussions. As I sat thinking about how much has been done during the last decade in containing this scourge, my attention was drawn to a recent newspaper article regarding an incident in Jaipur. A good samaritan was running a care-home for HIV inflicted children and he was asked by his landlord to vacate the place due to pressure from the neighbours. Now this group of 19 HIV positive children, most of them orphans or homeless, had nowhere to go. It looks paradoxical that despite knowing so much about the disease, we seem to show so little concern. We have developed newer medications to treat it and awareness programs to prevent it, but somehow we seem to have forgotten the fact that these are people too, who have been unfortunate in contracting the disease, probably for no fault of theirs.

I was also reminded of the plight of two children from a village near Mysore. These children are living with their grandmother, as both their parents are dead. Their father was a driver who died six years ago due to AIDS. After his death, the local doctor had advised the mother and the two children to get tested. The mother was found to be HIV positive, but thankfully the children were negative. A few months later, the mother died of tubercular meningitis that occurred as a consequence of her compromised immune status. The local villagers shunned these children and ostracized them, fearing that they and their children would also get infected with the disease. Their grandmother (who lived a little distance away) had to bring them back and keep them with her. Having nobody else to support her, she is now forced to work in the agriculture fields. Working everyday leaves her with no time to attend to her grandchildren, but she is at least able to ensure that they have something to eat. I shudder to think what would happen to these children if this old lady of nearly 65 years were to pass away.

Another picture that keeps coming to my mind is that of Shiva (name changed to protect identity). He is 8 years old and works in a pani-puri shop in Mysore. He earns around 15 rupees each day and I had stuck a conversation with him. I was trying to explain to him that at his age he needed to be in school and not be working. He smiled innocently and did not say much. I was keen on knowing more about him and continued to pester him to go to school. That is when he told me his story. Both his parents were alive and dying due to HIV/AIDS. Their family had thrown them out of their village and they had migrated to Mysore. Both of them were very weak and could not do any physical work. Somebody had referred them to the treatment center in the district hospital and they had just started anti-retroviral treatment. Shiva was now the only earning member and the little amount he earned ensured that his parents had something to eat each day. This disease had robbed Shiva of his childhood and his only consolation was that he was disease-free. At an age when he had to be in school and play with other children of his age, Shiva was forced into adulthood by circumstances completely beyond his control.

These may seem isolated and distant incidents for many. We need to understand that despite claims that we have managed to control the spread of the disease, we still have an estimated 17 million children worldwide who have lost one or both parents to AIDS.

According to the latest statistics from National AIDS Control Organisation (NACO) and UNAIDS, India has an estimated 2.5 to 3.1 million people living with HIV – including children under 15 years and those aged 50 and above. It is estimated that some 70,000 children below the age of 15 are infected with HIV and 21,000 children are infected every year through mother-to-child transmission. The country has an increasing population of children living with HIV and those who have lost either one or both parents to an AIDS-related illness. Some of the HIV high prevalence states in India such as Karnataka, Tamil Nadu, Andhra Pradesh, Maharashtra, Manipur and Nagaland are grappling with increased numbers of children infected and affected by HIV and AIDS. There is an emerging trend of children heading their households, and an increasing number of children caring for sick parents and siblings.

In Karnataka itself there are around 11,000 children currently living with HIV/AIDS. It is estimated that nearly 300 children died of the disease in the State during 2007-2010. Though the State and NGOs were doing their bit for these Orphaned and Vulnerable Children, we need to also look at the larger societal responsibility. These children are at higher risk of missing out on schooling, live in households with less or no food-security, suffer anxiety and depression, and are in greater danger of exposure to HIV. Their experiences vary significantly across families, communities and states, and are influenced by a complex mix of variables. In order to properly care for them, the minimum package should include access to education, healthcare, social welfare and protection. A socially conscious citizenry is the only way to ensure that these children will be cared for. Programs that support these children are suffering because of decreasing financial support from donors. We now need to move away from donor dependent programs to those run and managed by communities.

Balu

Categories: Musings