“I was returning home from study classes on a rainy evening when my uncle cornered me under a flyover, a few months later I was diagnosed as HIV positive,” said 17-year-old Kripa, who travels from Aligarh to Delhi for her routine treatment at Deen Dayal Upadhaya Hospital in the national capital.
Her family, she claims, abandoned her once they got to know about her condition. People mounted her with harassment and her ‘dignity’ was snatched away by society. Not wanting her to suffer the stigmatisation, her friend helped her move to a far off village and suggested that she get proper treatment in Delhi.
This, however, is not an isolated case. Countless of children are infected or affected by HIV/AIDS in India for multiple reasons. Most common among these are parental transmission, child abuse and blood transfusion. According to a report by the National Commission for Protection of Child Right’s (NCPCR), nearly three to four lakh children are in need of HIV and AIDS treatment.
Young children grow up in the bitterness of discrimination, dealing with unwanted community pressures. Children have emerged as a very significant group among the HIV/AIDS patients in India, as they are not just fighting to combat bodily immune but insults from society as well.
Even though the Union Cabinet earlier this month approved the new amendments to the 2014 HIV/AIDS bill which now states that anti-retroviral treatment is a legal right to all HIV/AIDS infected patients, the guidelines remain the same. ART will be available to only those who are below the CD4 500 count. It yet again neglects all those infected patients who are above CD4 500.
In this situation, are government policies working for the best interest of children with HIV?
National Aids Control Organisation (NACO), in 2011, focused on “halting and involving, ” which means preventing new infection in general population. This initiative was highly beneficial to children, with Prevention of Parent To Child Transmission Centers (PPTCT) and integrated counseling and testing centers (ICTC) being set up at hospitals, at the block and district level. This helped with the early diagnose of pregnant mothers so that the new born child is born without the infection. But children affected by HIV have been sidelined by the current policy.
Inadequate treatment for Children infected and affected by HIV/AIDS
Anti- retroviral treatment (ART) depends on CD4 count of a patient. Earlier the government aimed for covering the most infected patients who were at CD4 count 250 or less but now government has increased their level to CD4 500. Among those infected with HIV many do not fall under the category of the decided limit, especially children. According to a report published in medical journal POZ, HIV infection in children leads to the death of 60 per cent of them before two and a half years of age.
“Due to lack of resources and increased population, India still lacks at offering complete treatment to HIV/AIDS patients. Children who do not meet the CD4 count are asked to maintain nutritious diet,” said Dr. Anil Garg, Nodal officer, ART department at DDU hospital.
There is no provision for children who do not fall under CD-4 criterion. An alternative to ART for children above CD4 500 still remains a challenge. Government has also stopped supplying nutritional kits to the patients which tends to be a huge disadvantage for the health of children. Not all centres of ART are specialised in focusing on pediatric HIV. In Delhi, Kalawati Saran hospital is the only hospital specialised in pediatric HIV.
Hope for education
“I used to live in constant fear that I might lose my parents soon, I had to quit school to look after my parents. Later when even I was diagnosed with HIV, I was surrounded by a negative vibe of being untouchable,” says Arun, who lives with his grandparents in Uttam Nagar, New Delhi.
A lot of children drop out of school whether they are infected or affected. Infected children keep falling ill due to their dying immune system. Children either have to miss school due to regular visits to doctors, or they drop out owing to the stigma of how other children will react. Some schools even deny admission to infected children. “Now a days, fighting HIV has become easier than facing society.
Our community is our worst enemy, many fail to have the courage to even take free treatment from hospitals as they hide away from everyone just to avoid bitter word of mouth,” said Shweta, Project coordinator at Desire society, Gurgaon, an NGO that takes care of orphan and vulnerable children.
Shelter, awareness and financial aid for Orphaned and Vulnerable children suffering from HIV
Many are unaware of the fact that the government provides financial aid of Rs. 1000 to children infected with HIV but there isn’t any schemes for the affected children. For every child infected with HIV, there are fifty of children affected by HIV. “My uncle dropped me here after my parents passed away. He said he doesn’t have the money to treat me,” said Rajesh, who joined Desire Society, an NGO, a month ago and is waiting for the next academic session to begin so that he can also go to school. Rajesh, 12 and his brother Rupesh, 4, are new admissions to the Desire Society in Gurgaon, Rajesh said unofficially he himself is the guardian to his little brother as they have nobody else to look up to.
Now, the new amendment officially allows children between the age of 12-18 years to be competent to act as a guardian of another sibling below 18 years of age. Most of the children affected are not aware of the disease HIV but have been instructed to be cautious when any cut or injury happens.
“When we go out to play in the evening, doctor uncle in the next building shouts at us to stay away from their children… he scold us for playing in the common playground,” . According to the amendments included in the 2014 bill, there shall be a formal mechanism to probe complaints of discrimination against patients. It give a ray of hope that discrimination will end at the source, where even families abandon HIV positive children.
* Names of the children have been changed to protect their identity