The Untouchables: Children living with HIV, AIDS in Manipur (Dec 1 is World AIDS Day)

IMPHAL - Growing up in a conflict zone, children living with HIV in the northeastern state of Manipur are deprived of more than their childhood.

Eleven-year-old Tina, who is HIV-positive, contracted measles and had to be taken to the far-off Imphal General Hospital. After initial treatment and medication was administered, the doctors referred her to an isolation ward of a neighbouring hospital.

When Tina and her mother arrived at the hospital, they found the isolation ward had been converted into staff quarters. So Tina returned home though her weakened condition demanded hospitalisation.

Consequently, she could not access the anti-retroviral therapy (ART) course either. She now lives in the shadow of death, without access to the only medication that promises survival.

According to the World Health Organisation, ART consists of the use of at least three anti-retroviral (ARV) drugs to maximally suppress the HIV virus and stop the progression of HIV disease.

Huge reductions have been seen in rates of death and suffering when use is made of a potent anti-retroviral regimen. The ongoing conflict within the state often leads to curfews and restrictions on movement, in turn cutting off access to ART.

Frequent shutdowns and blockades called by different actors add seriously to the problem. For HIV-positive children, it results in sporadic supply of medication to the hospitals and healthcare centres.

“Only two of the state-specified seven hospitals that offer ART are regularly stocked with the necessary medication,” says Dipankar Majumder, director, development support, Child Rights and You (CRY).

“The hospital in Imphal gets overcrowded because people from all across the state come to it in the search of treatment.”

CRY’s Ashim Ghosh, who also works in the region, adds: “Patients have to travel for up to 40 km, in a place where public transport is non-existent, to access the central hospital. Even then, care is not guaranteed.”

Staff absenteeism, especially in remote districts, is common, due to the frequent outbursts of violence. This means that even when people from remote areas manage to make the expensive trip to the city to get their monthly stock of ART medicines, they cannot always get a health check-up at the same time.

“The importance of a stable education environment as a nurturing setting in which children can be taught about HIV/AIDS is underrated. Schools can be, and often are, a place for peer-to-peer learning, myth-breaking and monitoring the spread of the disease in key populations at higher risk within the local community,” says Majumder.

Lack of access to healthcare and education are not the only struggles in the lives of Manipur’s HIV-positive children. Efforts to change people’s existing perceptions of the disease remain woefully unaddressed.

The stigma attached to HIV and AIDS is still widely prevalent across all sectors of the Manipuri community.

There is little evidence pointing towards concentrated efforts by the government to address the issue of children living with HIV.

CRY partner CCRP (Coalition on Children’s Right to Protection) works extensively to influence policies to benefit children in Manipur. It says that there is no adequate provision for shelter, education and food to deal with the emerging issues.

Key figures of the number of children living with HIV in India are not officially published. HIV-positive children don’t even feature as a category in the Manipur AIDS Control Society (MACS) 2007 Sentinel Surveillance report on the rate of HIV prevalence among various categories of population.

Even though Manipur was the first state in the country to have its own policy statement on AIDS, it has yet to develop a comprehensive plan to provide support and protection to children, both infected and affected by the AIDS epidemic.

“The situation of children living with HIV and AIDS cannot be separated from the other challenges that children in general are coping with in the region,” says Yogita Verma Saigal, director, CRY.

(Kamini Kumari can be contacted at kamini.k@ians.in)