World AIDS Orphan Day - A reminder of our inability to help children in need

Surjakanta Ngangom *

For a seventeen year old boy he is small and frail. The World AIDS Orphan Day on seventh May every year saddens him; flashbacks of his mother passing away when he was still very young, going to the hospital with his grandmother to get his ARV drugs and the fact that nothing much has changed for children like him.

When asked if he would take part in the observation organised by the Manipur Network of Positive People (MNP+) in Imphal, he said he would but won't join if there is any outdoor activity. It's understandable; ART since 2003 he looks frail and probably because he was not adhering to the treatment during the initial years has persistent skin and eye infection.

After the nine standards he has stopped going to school. Every month he takes an autoricksaw to RIMS to get his ARV drugs. His grandmother who does odd jobs gives him 40 rupees to pay the fare. Earlier he went along with his grandparents but they are too old to accompany him now.

He is one of thousands of young children who suffer stigmatization and discrimination because they are HIV positive or because they are orphans or both. Worldwide the number of children who have lost one or both parents to AIDS is estimated to be 16 million (UNAIDS 2010). In Manipur there are 2,578 HIV positive children (Jan 2011, MACS) however an assessment of children who have lost one or both parents is yet to be done.

An assessment done among 4242 children infected and affected by HIV and AIDS in six districts of Manipur reveals that 38 percent of mothers are widows and 71.8 percent among them are HIV+. The assessment was done under the Children Affected by HIV and AIDS- Health and Happiness for All popularly known as CHAHA- an initiative supported by the India HIV/AIDS Alliance and funded by the Global Fund for AIDS, TB and Malaria - 6 (GFATM-6).

Women and children most affected

More than two decade into the epidemic Manipur is witness to an increasing number of widows and orphans. Socio-cultural factors put them even more at risk of being discriminated thus depriving them of existing services, basic education, food and even shelter.

After Pramo's husband died of AIDS in 2005 she shouldered the responsibility of bringing up his only children, a son who is in eighth standards now. Baring some support from local NGOs and positive networks she has no one to turn to when she is ill or needs money for her son's education. Most of her earning from silk reeling and aggarbati is spent on his education.

Suffering from a persistent pain in the chest since last few months she wants to go to a doctor but has not been able to do so far. "I know I won't be able to undergo the treatment- tests, medicine...". Pramo knows only a few clinical investigations and medicine are available free of cost at the ART or other service centers.

In the absence of an appropriate care and support system for women and children infected and affected by HIV and AIDS Pramo's story and hundreds like her is a story of despair and helplessness. It only worsened when Pramo's son volunteered to give up study to work in a shop as a sales boy. Though she has persuaded him to continue studying it may not be long before she crumbles and give up her hope of providing for his education and wellbeing till he can stand on his own.

It is against this backdrop that the Manipur Network of Positive People (MNP+) started observing the World AIDS Orphan Day since 2010. The focus has been on injecting drug users, sex workers, people living with HIV and AIDS (PLHIV) and other groups of people who are considered at risk or should be taken care of. Women and children have been neglected or ignored for a long time.

Initiatives

In 2008 when MNP+ launch its education support programme for HIV infected and affected children or SASO in 2007 when it initiated the CHAHA programme they were overwhelmed by children who wanted to be enrolled in the programme.

Though it was felt that there is a need for women and children specific programme no one thought that people wanting to enroll in these programmes would massively outnumber people who could be supported.

Starting 2008, MNP+ provided education support to 45 children. The number rose to 10 children in each district except Tamenglong. Every year hundreds of children approach for the support however due to lack of funds only a few considered to be the neediest are selected. MNP+'s difficulty also lies in sustaining education for children whom they already have enrolled. "We can't support a child for a year and drop him the next year. It has to be sustained till parents can support on their own or find other sources", Jhalajit, MNP+.

The MNP+ education support programme is funded by donations from business houses and individuals and also charity shows that it conducts every year. Since initiation 97 'philanthropists' have contributed money, school uniforms, stationery items etc. for the cause.

There are other agencies like the Catholic Relief Service (CRS), FXB, World Vision, and Clinton Foundation are funding similar programmes however these are limited both in number and area of coverage. For instance the CRS funded education programme implemented by MNP+ and four other NGOs is limited to 840 children in eleven constituencies of Imphal East and Imphal West. The initiative is an add-on to the Live Aid Project funded by the same agency.

Besides care and support initiatives designed for these children past incidents of crime and violence against women and children infected and affected by HIV and AIDS also indicates that there is an increasing need for a system to address these issues. The infamous incident of an HIV+ orphan murdered allegedly for his property and other such crimes calls for urgent steps to be taken to safeguard their rights, property and ensure their wellbeing. "We have to come together, develop a policy a system so that such crimes are not committed in future. Something which will ensure that the child's property, if he inherits any, is in safe hands and invested or spent on his care and wellbeing", L. Deepak, President, MNP+.

To date, the governments of the UK, US and Ireland have passed legislation promising 10 percent for orphans and vulnerable children