When the first cases of HIV were detected in India in 1986, the government initiated a number of preventative and awareness-raising programs through the first National AIDS Control Program (NACP). The country’s third NACP is now in place.

As India attempts to achieve its obligations under the Millennium Development Goals, the primary aim of the current NACP is to halt and reverse the spread of HIV in the country using integrated prevention, care, support and treatment programs.

India’s response to HIV has always centred on high risk groups and interventions among truck drivers, migrant labourers, injection drug users (IDUs), men who have sex with men and sex workers are at the heart of the NACP. The provision of antiretroviral drugs (ARVs) to people living with HIV or AIDS and the prevention of parent to child transmission is also a primary focus.

Some of the needs of children living with or affected by HIV are being addressed with help from donor agencies and NGOs but much more needs to be done to provide intensive counselling to children and young people as well as emotional support for adolescents.

The counselling services available at ARV centres focus mainly on treatment adherence for people living with HIV and there are no formal programs or structures designed to address the special needs of children.

Young people have been left out of the picture by national programs and the only services available focus on the provision of paediatric ARVs or nutritional support for infants. A single chapter in a high school text book tells teenagers about HIV prevention and treatment.

According to 16-year-old Babyli, “The chapter allotted to HIV and AIDS is towards the end of our Biology text book and is only for five marks. The teachers skip it asking us to read it by ourselves as more importance is given on covering the entire syllabus on time.”

“What I know about HIV is through reading about people living with HIV in the newspapers,” Babyli said.

There is a lack of the education support programs needed for children vulnerable to HIV and those left vulnerable because of it. It is common for these children to drop out of school because of their own cycles of illness or because they are forced to spend time caring for others.

Rajeev, 17, lost both his parents to AIDS-related illness when he was eight years old. “I, along with my younger sister, was cared for by our grandmother but we had to give up our studies as there was not enough money in the house,” Rajeev said.

Asked if he would want to resume his studies if he had the money, he said “It’s too late for that since I had to give up my studies a long time ago. But I wish there were vocational trainings like computer skills which would also help me earn money. I want to earn and save money and keep it aside for likely illnesses.”

Rajeev’s acceptance of his positive HIV status is a result of his daily exposure to the struggles of people living with HIV around him. ‘Adopted’ by the Manipur Network of Positive People, he has slowly come to terms with his status but there are many adolescents like him who have not had the same access to support or counselling.

Many parents or guardians fail to tell their HIV-positive teenagers that they are living with the virus, despite worrying about whether or not they are practicing safe behaviour. Some adolescents, such as 14-year-old Ibo, only discover their status after reading about it in newspapers.

“I read newspapers and that’s how I realized that the medicines I was taking were to keep my immune system strong. That was how I found out I was HIV positive. ARVs are for people living with HIV and all the time my grandfather told me it was vitamins I was taking,” Ibo said.

Since so many people access information on HIV through the media, Kishalay Bhattacharjee, Regional Bureau Chief of the national New Delhi Television news channel, says that the press should work together with aid groups and NGOs to tackle the issue.

Some positive initiatives for children are being set up and a number of foster care homes and educational support programs have been launched by NGOs. The government also has a number of schemes that could be effective if properly implemented.

The government-sponsored scheme Sarva Siksha Abhiyan (SSA) to provide free and compulsory education as well as one meal a day to children aged under 14 could benefit children from lower income families. Unfortunately media reports suggest that money has been siphoned off from the project and it is failing miserably.

An overhaul of government programs aimed at children and young people living with or affected by HIV and AIDS is vital before any more promises are made and forgotten.

According to Rajeev, young people just need the chance to “let out what they have bottled inside”.

Courtesy: Health and Development Networks.