Terminally affected?

Terminally affected?
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First Published: Thu, Feb 26 2009. 12 56 AM IST

Inheritance of loss: (top) AIDS orphans at Coimbatore-based NGO Native Medicare Charitable Trust; (above) an HIV-positive mother with her daughter at their farm in Namakkal, Tamil Nadu. Children from
Inheritance of loss: (top) AIDS orphans at Coimbatore-based NGO Native Medicare Charitable Trust; (above) an HIV-positive mother with her daughter at their farm in Namakkal, Tamil Nadu. Children from
Updated: Thu, Feb 26 2009. 12 56 AM IST
Coimbatore/Namakkal/Mumbai: The frail grandmother of 14-year-old Anand and his younger brother Chiran shakes her bald head, a grimace deepening her wrinkles. She is determined that Mint should neither talk to nor photograph her grandchildren. The only family member left to care for the two boys after they lost both parents to AIDS seven years ago, she was forced to migrate from her village Kumavapalayam to Coimbatore.
Inheritance of loss: (top) AIDS orphans at Coimbatore-based NGO Native Medicare Charitable Trust; (above) an HIV-positive mother with her daughter at their farm in Namakkal, Tamil Nadu. Children from HIV-households, who have lost one parent or both, are termed affected. They may or may not be infected. Arjoon Manohar / Mint
Even in the city, the three have had to move house four times after neighbours discovered the family’s history and Anand’s HIV-positive status—a stigma that hounds victims and their families.
“I have had enough of this (snide remarks and evictions). I’m too old to deal with this now,” she says.
Things are no different for Chiran, Anand’s eight-year-old younger brother. Although healthy, he, too, faces discrimination and alienation.
The lives of Anand and Chiran, millions of AIDS-affected children, and millions of HIV-positive people now depends on a legislation, the HIV/AIDS Bill, which was meant to be introduced in the ongoing session of Parliament, but will now likely have to wait for a new government to take over (elections are scheduled to be held by May).
Child rights groups also fear that by the time the Bill reaches lawmakers, it may not have provisions on guardianship of and inheritance rights for AIDS-affected children. These provisions were there in the original draft but were dropped when the Bill was sent by the health ministry to the law ministry.
Affected, but not infected
At least 10 million children in India are affected by AIDS.
There are 70,000 children currently battling HIV, according to a 2008 statistics from the National AIDS Control Organization (Naco), the arm of the Union health ministry responsible for coordinating the nation’s response to HIV/AIDS. But children such as Chiran are not even counted by government agencies, although they face almost the same prejudice as infected people.
The United Nations Children’s Fund (Unicef), in a July 2007 report, had estimated that India could have 50,000-300,000 infected children with another 6-10 million, irrespective of their own HIV-status, either having an HIV-positive parent or been orphaned by AIDS.
Those numbers are high, even when compared with the total number of HIV-positive people in the country—a maximum of 3.1 million, according to Naco. That puts the number of affected children at three times the number of HIV-positive people. As the Unicef report puts it, while fewer than 1% of adults in India are HIV-positive, about 2% of all Indian children are “affected” by the disease (and) about 2% of “affected” children are actually infected. Children from HIV-households, who have lost one parent or both, are termed affected even though they may or may not be infected.
Naco doesn’t have a count of the affected children.
“Children are worst hit by the epidemic and this is not understood fully by the policymakers and even people at large,” says A.S. Shankarnarayanan, managing trustee of Native Medicare Charitable Trust (NMCT), a Coimbatore-based non-governmental organization, or NGO, which, in six blocks of the district has identified 300 affected children such as Anand and Chiran and set up a hospice for them.
Spreading the word: A June picture of artists performing a street play in Karur, Tamil Nadu, to spread HIV awareness. Arjoon Manohar / Mint
The government too has begun helping AIDS-affected children, who until now were on the fringes of public health policies, by setting up shelters in some states. Naco has identified Tamil Nadu, Andhra Pradesh, Maharashtra, Karnataka, Nagaland and Manipur as high HIV-prevalence states.
Experts and activists say this is a start but is far from enough. The children need legal rights through a clear— even unique—set of laws that can protect them from discrimination,?ensure?their rights to inheritance, education and medical care, and facilitate things as simple as opening a bank account, they say.
Doubly cursed?
“HIV is the newest form of untouchability,” says Alex Parimalam, joint director of the Tamil Nadu State AIDS Control Society (TNSACS). Kajal Bhardwaj, a lawyer who has been campaigning for public health issues for years, explains the unique problems that afflict the AIDS-orphans alone. “These children live with stigma whether or not they are living with HIV. The HIV tag acts as an additional barrier to accessing services and societal support that other orphans can reach out to.”
Mint’s experience while traversing the villages and semi-urban fringes of Coimbatore and Namakkal, in western Tamil Nadu, corroborated this. In the village Anand, his brother and their grandmother lived before shifting to Coimbatore, people had begun avoiding their house. “There were no proper bathrooms in their village and the children used to bathe in the courtyard. If people saw water streaming down the road from their house, they avoided walking past the puddle,” says an NMCT worker now assisting Anand’s family.
The findings of the nationwide Unicef study detail say as much. Affected children, it states, are “teased, shunned, shouted at or ignored in their homes and neighbourhoods”. Exclusion from family events, ceremonies, festivals, birthdays, puja and marriage are common.
Affected children are often made to sit separately in schools, paid lesser attention and hear remarks about their parents’ illness. Some schools, bowing to public pressure, either refuse admission to these children or insist they be withdrawn after discovering the family history, even when they are healthy.
A government school in Coimbatore didn’t allow Kavee, a 16-year-old healthy girl who lost her father to the virus, living with her HIV-positive mother, in the hostel for a month. Even after she got in, she wasn’t served food. “I hear harsh, rude remarks, some of them maligning my character. I have just learnt to ignore them,” Kavee says.
The name of the school has been held back on NMCT’s request as other children supported by the NGO are studying there.
One of the NMCT’s trustees, S. Seetha Lakshmi, once had to convince a headmaster to let an HIV-positive child continue his studies but eventually shifted him elsewhere because “convincing a handful of teachers will not stop the news from spreading in the school and inviting spite”. Lakshmi says HIV is the only disease where death of a patient leads to discrimination of the family. “The minute an HIV-positive family is identified, it is ostracized and it migrates soon after. Cancer patients don’t migrate, then why HIV?”
Bradley Thompson, national coordinator for HIV/AIDS in Chennai-based charitable organization, World Vision India, voices the same sentiment. Other orphans generate sympathy from the society while “the stigma compounds the tragedy” for AIDS-affected children.
The medical fraternity, too, has been discriminatory sometimes. Even in “routine (non-HIV) medical treatment, if affected children can get someone to take them to a health care centre, they may be made to sit separately, wait until last, have nurses refuse to dress wounds or give injections...be referred to another centre, or simply turned away,” notes the Unicef report.
These children and even their caretakers often cope with depression, loneliness and are brought to these aid agencies with significantly higher levels of stress, say health workers.
Coping with depression
To cut through this vicious cycle of alienation, NMCT instituted Rojakuttam—a bunch of roses in Tamil—a support group consisting of HIV/AIDS affected children helping out each other. These groups operate in 20 villages, meet once a month and discuss their problems, report incidents of discrimination and identify others such as themselves in their communities.
Such groups help these children air their anxieties about a sick parent, sibling or their own status.
But these children can’t change everything. One of Kavee’s remorses is her group’s inability to save an 11-year-old boy she declined to name. “He was crying in one Rojakuttam meeting. He said his grandfather had prophesied that his parents would die and they did (due to HIV) and now it was his turn,” recalls Kavee, shaken even two years after it happened. “We promised him all help, accommodation, medicines, everything. But he died before the month was over, before we could do anything,” she rues, convinced that the boy had succumbed in the absence of a proper diet regime and medicines.
Some others survive, sometimes painfully. Saranya, along with her 10-year-old sister, six-year-old brother and an ageing grandmother, lives in a small hamlet off the Namakkal highway in Tamil Nadu—one of the districts with highest levels of HIV infections. Both her siblings are infected with HIV and tuberculosis and are undergoing treatment.
At 18, Saranya is not just the breadwinner for the family that lost both parents in quick succession, but is also paying off a Rs15,000 debt that her parents had run up for their treatment. She earns Rs30-60 a day at a local egg export factory. “I am just not able to pay off (the debt) any faster, with a household to run and the health expenses of my siblings,” says Saranya.
The class VI dropout simply wants her siblings to stay healthy and be educated. When her parents were alive, Saranya wanted to become a teacher. “I don’t think about my marriage or future any more.”
She goes all out to protect her family from sneers and doesn’t send her siblings to neighbours’ houses as “they talk bad things about our parents”. No one in school or her village knows the HIV-status of the kids and Saranya intends keeping it that way.
The stigma and ensuing migration in HIV households takes a toll on children’s education. A 2006 study by the National Council of Applied Economic Research (NCAER), that was supported by Naco and the United Nations Development Programme, had found that these children had a lower rate of school enrolment, attendance and a higher drop-out rate. This was mostly to take care of their ailing parents or younger siblings, assist in household chores, earn or simply because of their inability to pay the fees, the report said.
An alternative that is often discussed in policy workshops and has actually been implemented in Nagpur—a special school for AIDS-orphans has been set up here—providing separate facilities and economic incentives to this vulnerable group.
Experts, activists and government officials, however, oppose the idea of setting up special schools, homes and hospitals as it would not only deepen the stigma but institutionalize it. “The idea is to mainstream them and not identify them, subjecting them to further discrimination,” says M. Rajmohan, programme coordinator with Women’s Organization in Rural Development at Namakkal that has identified 86 such children. Also, it is costly and counter productive to dig out HIV affected people that are scattered in the entire population—especially, when they don’t want to be discovered.
Legal black hole
“Foster care regulations in India are very new and raw. The role of organizations, their responsibilities and rights are not very clear,” says Kajal Bhardwaj who has worked on drafting the HIV/AIDS Bill and finds it “very disappointing that even after five years, this Bill has not seen the light of the day”. She recalls her earlier days in Delhi-based public interest law firm, Lawyers’ Collective, where NGOs would come in trying to make sense of their guardianship rights in case the relatives of these orphans turned up.
At other times, anxious HIV-positive parents wanted to write wills to protect their children from scheming relatives or ensure continuation of their education. Then, there were ticklish adoption issues that involved separating siblings and legal issues of how to allow an orphaned elder sibling to earn, open a bank account, get a sibling admitted in school when they are “minors” or below 18 years. At least two infected mothers confirmed they feared their children will be on the roads after they died.
“We used to run into impossible human situations because of a legal black hole on the issue. These children simply fall through the cracks in law,” Bhardwaj says, emphasizing that these children needed clear legal and policy support and not just care homes to be stacked away in.
NMCT’s Narayanan and World Vision’s Thompson recall instances when an orphaned child was either thrown out of the house by the extended family or taken in, only to attach the dead parents’ property. “The court talks about appointing a guardian who will act in the best interest of the child. What if the guardian doesn’t do so? What remedy does the child have then?” asks Bhardwaj.
Slow awakening
The government is finally waking up to the needs of this group. Naco plans to set up 10 community care centres for children in the high HIV prevalence states, says Damodar Bachani, deputy director general of Naco.
“Although we will continue to promote adoption of these children by their extended family in their own communities, these care homes will provide dietary support, medical care, informal education and vocational training to (the) affected children,” explains Bachani who sees the care homes coming up by March and has received at least 100 applications from NGOs willing to participate.
While each shelter can house 50 children, if capacity permits, these homes will take in other groups of vulnerable children, too, as Naco doesn’t want to label these homes as AIDS special shelters.
In July 2007, Union health minister Anbumani Ramadoss had issued a policy framework for children and AIDS in India that for the first time recognized the problems of the AIDS-affected children and the need to protect their legal rights. It laid down clear policy targets to support these children, sought to generate cooperation across ministries and tried to mitigate the social evils of stigma for the children.
The minister’s framework, however, remains a mission statement till date. “We are bringing?out?operational guidelines, drafted along with Unicef, that will give clear action points,” Bachani says. These guidelines could be finalized in a 2 March meeting.
Still, none of these diminish the need to push through the pending HIV/AIDS Bill faster, which makes discrimination against an affected child illegal, besides other safeguards.
“HIV/AIDS has to be treated at many levels: medically for patients suffering from the virus, psychologically to boost their sagging self-esteem and socially to cure the misconceptions of those around them,” points out TNSACS’ Parimalam. The HIV/AIDS Bill can cover a fair distance on all these fronts.
Arjoon Manohar, a freelance photographer based in Chennai, contributed to this story.
(HIV-positive children have been called by their first names in this story to protect their identity.)
bhuma.s@livemint.com
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First Published: Thu, Feb 26 2009. 12 56 AM IST