Anu P., a 6-year-old in Maharashtra, was sent home from kindergarten in 2003 by her teacher. Her grandfather, who had been caring for Anu and her siblings after their parents died of AIDS, explained, “The teacher didn’t allow her to come to school because she believes Anu is HIV-positive. I believe that other parents were talking amongst themselves, so the teacher said she shouldn’t come.” A nearby private doctor told Anu’s family not to bring the girl to his clinic “because if you do, other people won’t come.’” The reason the man gave, her uncle said, was because of HIV.

Sharmila A., age 10, was HIV-positive and had lost both of her parents to AIDS. She stopped going to school in the fourth grade. “When I went to school, I sat separately from the other children, in the last mat. I sat alone. The other children wanted to be with me, but the teacher would tell them not to play with me. She said, ‘This disease will spread to you also, so do not play with her,’” Sharmila said. When she developed tuberculosis, she began traveling some four to five hours to reach a government-run hospital for free medical care. However, the hospital in Tamilnadu did not provide antiretroviral drugs, and her health did not improve. Sharmila died in January 2004.

These stories and many more are chronicled in a new report “Future Forsaken: Abuses Against Children Affected by HIV/AIDS in India” released yesterday in New Delhi by Human Rights Watch, a New York headquartered NGO. Zama Coursen-Neff, senior researcher with Human Rights Watch’s Children’s Rights Division is the author. The 209-page report is partly based on her research in India in November and December 2003 and finds that denial and widespread discrimination against children and teenagers are fuelling the already dangerous problem.

In India, most of those dying of AIDS are between fifteen and forty-nine years old, the age when many are raising children. By some estimates, as 1.2 million children under age fifteen in India have lost one or both parents to AIDS. But the number of AIDS orphans has not been adequately or officially measured, All this apart, hundreds of thousands of children are living with HIV/AIDS in India, according to official statistics.

An estimated 2.8 million people died of AIDS in India from 1980 to 2000, and the United Nations (U.N.) projects 12.3 million AIDS deaths from 2000 to 2015.
 •  Future Forsaken: HRW July 2004
The Central government has not conducted specific studies to accurately assess the number of children affected by AIDS. "The sixty million dollar question is whether we have accurate data about this problem. This kind of data is simply not being collected", says Zama Coursen-Neff. The general data collected about AIDS patients has not been disaggregated, she adds.

Information and awareness

The report finds that many children—and the professionals who care for them—are not getting the information about HIV they need to protect themselves or to combat discrimination. Even today, fear is rooted in misconceptions that AIDS is a casually transmitted disease. Misinformation and fear is causing some families to reject children who are HIV-positive or who are perceived to be. "There is very low awareness even in government officials. Many teachers, doctors, government officials and ordinary people in India still don’t know the basic facts about HIV transmission and AIDS care,” says Coursen-Neff.

The report states that fewer than half of all secondary schools offer any AIDS education. Those that do teach about HIV/AIDS do so at an age when most children, especially girls, have already dropped out. And the government is utterly failing to provide information to millions of India’s children who are not in school but on the streets, at work, in institutions, in non-formal schools and at home. “But the most vulnerable children are those who’ve dropped out of school, and they’re the ones who are least likely to get lifesaving information about HIV prevention. There are questions about what is being taught, the quality of teaching, and when it is being taught," worries Coursen-Neff.

Although some state governments, like that of Tamilnadu, have begun programs to educate the public, most have not.


Related to the information and awareness gap in the system is the problem of discrimination and abuse. The report has found that many HIV-positive children are being denied medical care because government facilities are either unavailable or lack basic medical supplies. Struggling families caring for HIV/AIDS-affected children find it even harder to pay school fees and related costs, further preventing some children from attending school.

Street children, child sex workers and children of sex workers, children from lower castes and Dalits (or “untouchables”) suffer even more as they also face other forms of discrimination. Sexual abuse and violence against women and girls, coupled with their long-standing subordination in Indian society, make them especially vulnerable to HIV transmission. Girls are also more likely to be pulled out of school to care for a sick family member or to take over domestic work. When living with HIV/AIDS, they may be the last in the family to receive medical care.

The report has documented that many doctors refuse to treat or even touch HIV-positive children. Some schools expel or segregate children because they or their parents are HIV-positive. Many orphanages and other residential institutions reject HIV-positive children or deny that they house them. Children from families affected by AIDS may be denied an education, pushed onto the street, forced into the worst forms of child labour, or otherwise exploited, all of which puts them at greater risk of contracting HIV.

“Children are being turned away from schools, clinics and orphanages because they or their family members are HIV-positive. If the Indian government is serious about fighting the country’s AIDS epidemic, it should stop ignoring children affected by AIDS and start protecting them from abuse,” says Coursen-Neff. Many are being forced to withdraw from school to care for sick parents, or are forced to work to replace their parents’ income, or are orphaned, the report documents.

How do children contract AIDS?

India’s National AIDS Control Organization (NACO) cites an abundance of routes. The most common route of HIV transmission in India is by sexual transmission and, in the northeast, transmission through injection drug use. Other modes of transmission include blood transfusions and from mother to child during the course of pregnancy, birth, or breastfeeding. Among young children especially, perinatal transmission is the most common source; however, children in India are also acquiring the disease through sexual contact, including sexual abuse; blood transfusions; and unsterilized syringes, including injection drug use. Girls, when subjected to sexual abuse or early marriage or when denied an education, are especially vulnerable.

National AIDS-control policy and institutions

The National AIDS Control Organization (NACO) is an autonomous body within the Ministry of Health and Family Welfare. It is charged with implementing the government’s response to HIV/AIDS prevention and control. It is responsible for providing training, research, surveillance, and program management; collaborating with other ministries and large government-owned enterprises; conducting advocacy; and mobilizing resources.

NACO and the state AIDS control societies’ primary activity targeting children has been prevention of mother-to-child transmission, which involves administering a short course of antiretroviral drugs to mother and newborn that greatly reduces the risk of HIV transmission during pregnancy and child birth. They have not implemented programs to address discrimination against HIV/AIDS-affected children in education, health, or other areas, and only a few states, such as Tamilnadu, have funded small projects to care for children living with HIV/AIDS.

The HRW report records NACO’s director explanation: “There has been no segment on children in NACO policy per se. Partly the reason is that there is not enough data generated in surveillance specifically on children.” According to NACO, U.N. officials, and others, the third phase of the national AIDS program, scheduled to begin in 2004, is likely to contain some provisions for children; however, NACO officials said they could not tell Human Rights Watch what those provisions would be since planning for the third phase had not formally begun at the end of 2003.

Acknowledgement of risks

If there is one situation the government has acknowledged, it is that children are a high risk group in the country. HRW documents that citing Crime in India in 1996, the Central Government reported to the Committee on the Rights of the Child, the treaty body that monitors implementation of the Convention on the Rights of the Child, that “the incidence of child rape increased and . . . . [t]here has also been an increase in the buying of girls for prostitution . . . and child marriages.”

Clearly policy makers and heads of institutions have not connected the dots between their acknowledgement of the risks and the rising reality.

Lack of integrated pan-organizational approach

It isn't that there isn't machinery to respond. The problem seems to be lack of an integrated multi-disciplinary approach to tackle this rising crisis. But this can only come when multiple departments at the Centre and State work together. This is precisely what isn't happening, and children are paying the price, documents the HRW report.

The Ministry of Education and state education departments are responsible for providing free primary education to all children, regardless of their or their caregivers’ HIV status. The Department of Women and Children in the Ministry of Human Resource Development develops government policies and legislation for children and women and coordinates other ministries’ activities in these areas. It also administers the Integrated Child Development Services (ICDS) program, which includes preschool, and health and nutrition for preschool children, services that are especially important for HIV/AIDS-affected children.

The Ministry of Health and Family Welfare and state-level health departments administer the public health system and medical education. They also oversee NACO and the state AIDS control societies. The Ministry of Health’s Department of Family Welfare and its state-level counterparts focus on family planning, and reproductive and child health, both of which should overlap with HIV/AIDS prevention and care for HIV-positive women and children.

The Ministry of Justice and Social Empowerment and corresponding state-level departments are responsible for children in need of care and protection: orphans and neglected children; children out of school, including street children; children in conflict with the law; and other marginalized groups. The Ministry of Labour and state labour departments are responsible for removing children from hazardous and bonded labour, for prosecuting employers, and for rehabilitating the children.

Despite all this, with the exception of a few individuals, most government officials are leaving HIV/AIDS up to NACO and the state AIDS control societies and failing to take responsibility for protecting HIV/AIDS-affected children under their jurisdictions. For example, HRW records in their report that the Secretary of Family Welfare, J. Prasanna Hota said that there was no need to meet with him to discuss his department’s policies for HIV/AIDS-affected children because “NACO is heading this.” According to Hota, his department was implementing the prevention of mother-to-child transmission program but has no programs or policies of its own for HIV/AIDS-affected children.

One of his state-level counterparts, Tamilnadu Commissioner for Maternal, Child Health and Welfare, who was also the acting Director of Family Welfare, told Human Rights Watch that: As the director of Family Welfare, our primary focus is on controlling the birth rate. We don’t directly handle HIV. Even in child welfare we do not handle it. We provide condoms but their main purpose is birth control, not HIV. . . . We are under the Health Ministry and we take care of the health of the normal child. We don’t have anything to do with HIV. . . . Our aim is a healthy mother, healthy child, and a decrease in the infant and maternal mortality rate.

The States

State AIDS control societies, with funds and technical and policy guidance from NACO, are responsible for implementing the National AIDS Prevention and Control Policy. The state AIDS control societies are supposed to contract with NGOs to implement blood safety programs, interventions with high-risk populations, educational campaigns, voluntary counseling and testing, and care and support of people living with HIV/AIDS.

But while state AIDS control societies exist in every state and in certain municipalities, their effectiveness reportedly varies widely. According to the World Bank in 2003, one-third of the posts in all state AIDS control societies remained unfilled, as was the case in 1995; many NGOs lacked the technical capacity to implement national policies; interventions were still very few for “high risk” men other than truckers; and NACO was failing to provide sufficient technical assistance to state AIDS control societies, many of which, in turn, were not providing sufficient supervision or technical assistance to NGOs delivering services.

Going forward

Even without the AIDS crisis, the public education and health systems in the country are in a broken situation. When delivery of elementary education and health care are poorly managed, starved of funds and plainly aren't working, why does Coursen-Neff think that these systems must be able to handle a crisis or an impending crisis like this one?

Coursen-Neff admits that delivery of basic services is a huge problem in India and the system simply isn't coping. "But this doesn't address the discrimination aspect -- governments have to ensure that children aren't turned away from schools and facilities. Monitoring for discrimination has to be a key component. Doctors, training academies, care-givers, government officials all have to part of a newer awareness and anti-discrimination strategy", she points out.

In sum, the HRW report warns that the rising incidence of HIV/AIDS and the risk of HIV/AIDS in children is simply not on the radar screen of public health institutions. Second, discrimination against infected children and un-infected children of infected relatives/adult parents remains and this is likely to exacerbate the problem. And all of this will only further undermine the national anti-AIDS policy and put millions of lives at risk.

Human Rights Watch has called on the Indian government to take immediate action to enact and enforce legislation proscribing discrimination against people living with HIV/AIDS; include for teeth in legislation so that children may never be barred from school solely because they are HIV-positive; ensure that children living with HIV/AIDS receive all available medical care, including antiretroviral treatment; provide all children, both in and out of school, with comprehensive, accurate and age-appropriate information about HIV/AIDS.