HIV positive children battle disease, discrimination

New Delhi, December 01, 2010
Published in Hindustan Times

Away from a group of children playing in a lush green park in the heart of the capital, eight-year-old Shashank huddles on an iron bench in a secluded corner. "I am HIV positive, so I can't play with them now. I wish I could join them," he says. He got infected at birth from his mother. According to the National AIDS Control Organisation (NACO), nearly 18,000 children got HIV from 65,000 affected mothers in the country in 2009.

HIV positive children battle disease, discrimination
Shashank (name changed) was diagnosed as HIV positive in 2004. He has now got used to facing discrimination all the time.

"At the time of Shashank's birth in 2002, I got blood transfusion at a government hospital in Delhi, and they gave me HIV infected blood. Both me and my son are HIV positive now," Shashank's mother said.

"Some school authorities also refused to take him when they saw HIV positive mentioned on his birth certificate," she added.

His mother is reluctant to reveal the government hospital's name as she has lost the papers of blood transfusion, and is unable to claim justice.

Shashank, who lives with his family in a rented accommodation in west Delhi, now studies in a government school nearby. The Class 2 student falls ill frequently and needs constant medication, but he aspires to join the police when he grows up.

"I want to be like other children. But the moment I say I am affected by HIV, I am made to feel like a victim," he said.

Social activists working for HIV affected children admit that even though there is a fall in the number of HIV-AIDS-affected in the country, and there are adequate funds by the government to provide medicines at the Anti-Retroviral Therapy (ART) centres, basic right to education, employment and nutrition are still denied to the patients.

"The problem comes when the status of any HIV positive person is revealed in public. There is a lot of stigma and discrimination associated with the disease, which is wiping away all efforts to spread awareness about its prevention," said Sahil, a member of voluntary organisation ActionAid.
Globally, around three million children are affected by HIV through parent to child transmission.

Thalassemia affected children, who require blood transfusion in every 15 days, are often given HIV infected blood.
"The need is to move beyond the dialogue of AIDS prevention. There have been cases where HIV positive people were not even allowed to use the common village tap," Parvinder Singh, communications manager with the ActionAid, said.

"Focus on a stigma-free life should be a priority," he added.

Cases of discrimination show the sordid state of affairs in some of the most developed parts of the country.

Miles away in Hyderabad, Rohit and Anurag (names changed) lead a fate almost similar to that of Shashank's.

"A month back I came to know I am HIV positive because of infected-blood transfusion. I have lost my mother to AIDS," Anurag, 10, bravely told a massive crowd at a public hearing organised in the capital by ActionAid.

"Everyone laughs at me, my teachers taunt me. When I come home, I sit alone as I realise it is a dangerous disease," he said.

Rohit's story is no different. "During recess nobody sits with me. My friends have changed the words of a song to tease me, saying I have a strange disease that will spread to everyone," he said.

The lack of most basic information on how HIV spreads is contributing to stigma, experts say. India has around 3.1 million people infected by HIV/AIDS.

"An HIV positive person's first support system is the family. Also, it is the responsibility of doctors and society as a whole to not let discrimination happen in any way," said Seema Rawat (name changed), 32, a fellow with ActionAid for the last four years.

"Lack of family support, financial crisis, fear of societal discrimination are making it difficult for HIV positive people to lead a respectful life. Financial crisis makes HIV positive women go into prostitution, after which they become high-risk groups," added Rawat, who was diagnosed with HIV in the year 2004.

Rohit, Anurag and Shashank are back in their hometowns these days, still leading a life of anonymity and struggling for their rights every day.

"I know death will strike everybody one day. Maybe, it will strike me early because I am HIV positive," said Shashank, whose experiences have made him mature beyond his young age.