The New ‘Untouchables’: Children Living with HIV and AIDS in Manipur - India

With only 0.2% of India’s total population, Manipur has nearly 8% of India’s HIV-positive cases.



Manipur is ranked third in terms of sheer number of HIV/AIDS cases - preceded only by Maharashtra and Tamil Nadu.

(Source: Manipur State Aids Control Society, Government of India http://manipursacs.nic.in/)



Public services like government-supported healthcare, the public distribution system and anganwadis are minimally functional in the state.



India signed the UN Convention on the Rights of the Child in 1992, which stipulates guiding principles of survival, development and protection, non-discrimination, the best interests of the child and participation. These principles also apply to the protection and treatment of children with HIV and AIDS.

Growing up in a conflict zone, children living with HIV in the north-eastern state of Manipur in India are deprived of more than their childhood – sometimes they are unable to access the life-saving Anti Retroviral Therapy (ART) treatment, says CRY- Child Rights and You.



11-year-old Tina (name changed) 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, even though her weakened condition demanded hospitalisation. Consequently, she could not access her 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, antiretroviral therapy (ART) consists of the use of at least three antiretroviral (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 antiretroviral regimen. In other words, without ART,

The ongoing conflict within the state often leads to the imposition of curfews and a restriction on movement. Frequent bandhs and blockades called for by different actors adds seriously to the problem. For HIV-positive children, it results in a 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 medication required for the treatment”, says Dipankar Majumder – Director, Development Support, CRY. “The hospital in the capital city, Imphal, gets over-crowded because people from all across the state come here in the search of treatment.”



CRY’s Ashim Ghosh, who also works in the region adds, “Patients have to travel for up to 40 kilometres, 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 anti-retroviral (ART) medicines, they cannot always get a health check-up at the same time.[1]



The unstable political situation also affects the proper functioning of schools in the State; coupled with the problem of insufficient teaching staff and poor attendance when fighting breaks out. “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 Manipuri society; and young people in Manipur face the same discrimination – sometimes more acutely.



On 7th April 2010, 18-year-old Senjenbam Nonoisana was brutally murdered in Manipur’s capital city of Imphal; allegedly killed for the property he inherited upon his parent’s death. Nonoisana, orphaned by AIDS and HIV-positive himself, was left in the custody of his paternal aunt and uncle.



His story is just one incident in a grisly trend emerging in Manipur – several forms of exploitation against children. “Harsh discrimination practised against those affected by HIV and AIDS is visible across the State,” says Majumder.



The discrimination against those infected by HIV is now clearly visible across the Manipuri landscape. “In Manipur, you will find small hamlets on the outskirts of villages, where HIV-positive mothers and their children, who have been thrown out of their homes by relatives, try to eke out a living”, says Ghosh. “It’s almost as though a new group of ‘untouchables’ is being created, all because of the ignorance surrounding AIDS and the scarcity of medicines”, he adds.



That this trend is emerging in Manipur, a state with the dubious distinction of having the largest HIV-positive population (relative to percentage of the population infected) in the country is particularly worrisome.



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, and reports 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. “The start of any HIV-specific programme has to acknowledge and work with the extreme stressors that affected children are living with. An integrated approach is required - one that guarantees the provision of free and accessible healthcare, the elimination of poverty and the conflict that gives rise to it”, she adds.



In order to effectively address the needs of children, both, infected and affected by HIV, CRY recommends three basic actions:

* Since ART is proven to suppress the HIV virus and stop the progression of the HIV disease, the government should make ART freely available and accessible, specially in paediatric doses, preferably at the community level through functioning Primary Healthcare Centres. Create and enable special corridors for supply of life-saving drugs including ART so that frequent blockades do not take a toll on children living with HIV.

* The long-term conflict has resulted in unprecedented denial of the rights to health, survival and development for all children in Manipur, including the HIV positive children. The government should push for a permanent end to armed conflict that is one of the significant reasons behind poor access to healthcare. The extra judicial powers vested with the army needs to be thoroughly re-examined to ensure that children do not suffer from violence and trauma.

* To combat and end the life-threatening degree of stigmatization of HIV affected children, widespread community awareness programmes are needed, as well as peer-to-peer education, support groups and facilitated workshops.

* CRY calls for the National bodies such as the National Commission for the Protection of Rights of Children and the respective Ministries to step in, to resolve the situation while keeping children’s needs at the top.



“State authorities must invest in public facilities, infrastructure and rights-related services such as primary healthcare, provision of Anti Retroviral Therapy (ART) for children and schooling. This approach needs to be prioritised above all other approaches to problem-solving in Manipur”, says Dipankar Majumder, CRY’s Director, Development Support.

“The situation of children living with HIV is particularly disconcerting, since they are infected, and affected by circumstances and actions beyond their own doing. They are, in every sense, innocent victims of the epidemic” says Verma Saighal.