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II.  Background

HIV/AIDS in India

Up to forty-two million people worldwide, including two to three million children under age fifteen, were living with HIV/AIDS at the end of 2003.⁷  In India, government statistics put the number of people living with HIV/AIDS at up to 4.58 million in 2002, of whom some 200,000 were said to be children under age fifteen.⁸  Many experts consider this figure to be a significant underestimate.  The United States (U.S.) National Intelligence Council estimated that there were between five and eight million people in India living with HIV/AIDS in 2002, and projected that the number would increase to twenty to twenty-five million by 2010.⁹

Although by official counts South Africa has the largest number of people living with HIV/AIDS of any country in the world, many observers believe that India has many millions more than those accounted for in its official estimate.¹⁰  Given India’s massive population—over one billion in 2001—the percentage of the population living with the disease is officially less than 1 percent.¹¹  However, some individual localities and subpopulations are suffering much higher rates.¹²  All of India's states have reported AIDS cases, and surveys show that the virus is spreading from higher-prevalence urban areas into rural communities.¹³  The government considers six states to be “high-prevalence,” that is, with more than 1 percent of the general population believed to be living with HIV/AIDS:  Andhra Pradesh, Karnataka, and Tamil Nadu in the south, Maharashtra in the west, and Manipur and Nagaland in the northeast of the country.¹⁴  However, the singling out of these states should not be allowed to obscure the spreading epidemic in other states, including states where little is known about the disease, such as Uttar Pradesh and other northern states that have very weak public health systems and limited HIV surveillance.¹⁵

According to India’s National AIDS Control Organization (NACO), the most common route of HIV transmission in India is by sexual transmission and, in the northeast, transmission through injection drug use.¹⁶  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.¹⁷  (The role of education in HIV/AIDS prevention is discussed below.)

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 2015.¹⁸  (This number alone suggests that many more people are living with HIV/AIDS than are officially recognized.)  Most of those dying of AIDS are between fifteen and forty-nine years old, the age when many are raising children.  The number of AIDS orphans has not been adequately measured, but some calculate as many as 1.2 million children under age fifteen in India have lost one or both parents to AIDS.¹⁹

Government Bodies Responsible for HIV/AIDS-Affected Children

Numerous national and state level government bodies in India have HIV/AIDS-affected children in their jurisdictions.  These include bodies within the departments of health that are directly responsible for HIV/AIDS, as well as bodies that provide children with basic services and that should be ensuring the HIV/AIDS-affected children, who are often especially vulnerable, receive those services.  However, most have largely failed to take any responsibility for these children.

NACO and the State AIDS Control Societies

NACO, an autonomous body within the Ministry of Health and Family Welfare, is charged with implementing the government’s response to HIV/AIDS prevention and control.  NACO is responsible for providing training, research, surveillance, and program management; collaborating with other ministries and large government-owned enterprises; conducting advocacy; and mobilizing resources.²⁰  According to NACO, its programs for care and support of people living with HIV/AIDS include providing medications to treat opportunistic infections, training both private and public health care providers to improve the management of HIV/AIDS, supplying health care providers with post-exposure prophylaxis (antiretroviral drugs that can reduce the risk of contracting HIV following exposure), expanding the outreach of voluntary confidential counseling and testing centers, and increasing the number of community care centers (which, as it describes them, appear to be institutions).²¹

At the state level, state AIDS control societies, with funds and technical and policy guidance from NACO, are responsible for implementing the Indian government’s HIV/AIDS strategy:  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.²² 

While state AIDS control societies exist in every state and in certain municipalities, their effectiveness reportedly varies widely.  International donors, central government officials, and activists often cited state AIDS control societies in Andhra Pradesh, Maharashtra, Manipur, and Tamil Nadu as being much more active than those, for example, in Uttar Pradesh, Bihar, and Haryana.²³  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.²⁴

The National AIDS Prevention and Control Policy does not address children specifically, and NACO and the state AIDS societies have focused little or not at all on children affected by HIV/AIDS.  NACO’s director explained:  “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.”²⁵  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 2003.²⁶  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 Tamil Nadu, have funded small projects to care for children living with HIV/AIDS.

Other Responsible Government Bodies

In addition to NACO and the state AIDS control societies, other government ministries and their state-level counterparts also have direct responsibility for children affected by HIV/AIDS, including those living with the disease.²⁷  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 Labor and state labor departments are responsible for removing children from hazardous and bonded labor, for prosecuting employers, and for rehabilitating the children.

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, the Secretary of Family Welfare, J. Prasanna Hota, told Human Rights Watch that there was no need to meet with us to discuss his department’s policies for HIV/AIDS-affected children because “NACO is heading this.”²⁸  According to the Secretary, his departmentis implementing the prevention of mother-to-child transmission program but has no programs or policies of its own for HIV/AIDS-affected children.²⁹  One of his state-level counterparts, Tamil Nadu 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.³⁰ 

Department staff present during our meeting confirmed that they address only “reproductive health, not HIV.”³¹

According to an expert on the issue, who did not wish to be named:  “We have to get HIV/AIDS as a more multidisciplinary discussion than it is now.  Other government departments besides NACO must be encouraged to see HIVAIDS as an area of concern within their own respective mandates.”³² 

Funding to Address HIV/AIDS in India

Bilateral, multilateral, foundation, and NGO donors have pledged hundreds of millions of dollars towards HIV/AIDS in India.³³  Most donors have focused on traditionally “high-risk” adults rather than children and have not ensured that their programs include adequate human rights protections for these persons.  Similarly, despite repeated requests, staff of the U.N. Development Program (UNDP) and the World Health Organization (WHO) in Delhi declined to meet with Human Rights Watch during the course of our research, on the grounds that the U.N. Children’s Fund (UNICEF) alone of the U.N. agencies was addressing children affected by HIV/AIDS.³⁴

The Indian government’s own contribution to addressing HIV/AIDS, U.S.$38.8 million from 1999 to 2004, has been criticized as a sign of insufficient commitment to public health generally, and HIV/AIDS in particular.³⁵  The government’s failure to ensure adequate absorption capacity for available funds is also a concern.  For example, the World Bankproject to provide financing for the National AIDS Prevention and Control Policy was expected to end on July 31, 2004, but, as of June 2004, was expected to be extended, as only 70 percent of the funds had been disbursed at that point.³⁶  Barriers to disbursement have included government-imposed funding caps for HIV/AIDS and other programs, and the weakness in most states to implement programs.³⁷  Similarly, at the state level, the project director of Kerala’s state AIDS control society told journalists in July 2002:  “Availability of funds is not a problem.  We get aid from the federal government and other agencies.  The real problem is reaching out to the masses.”³⁸  In contrast, the director of NACO, referring to funds needed to provide antiretroviral drugs, told Human Rights Watch:  “There is a lot of hype about the money available, but in fact we are falling short of money.”³⁹

The committee which interprets the Convention on the Rights of the Child has noted that, regarding HIV/AIDS, “resource constraints should not be used by States parties to justify their failure to take any or enough of the technical or financial measures required.”⁴⁰

India’s Education and Health Systems

The impact of HIV/AIDS has exposed many of the serious deficiencies in India’s health and education systems.  According to the World Bank, without significant reforms, India will not achieve the health and education targets set in its own Tenth Five Year Plan, which sets forth the government’s main development objectives for 2002-2007 and provides the framework for policy and funding decisions, or the Millennium Development Goals, a set of time-bound, measurable targets for combating poverty, hunger, disease, illiteracy, environmental degradation, and discrimination against women that U.N. member states adopted in 2000.⁴¹  The World Bank also noted in 2003 that the government must accompany spending increases with improvements in the transparency, accountability, and independence of both sectors if health and education outcomes are to improve.⁴²

India’s health and education systems are the joint responsibility of the central and state governments, although states deliver most of the services. 

India’s Health System

The health care system’s problems generally are reflected in its response to HIV/AIDS:  poor quality of care, with the poor receiving on average fewer resources than the rich; inadequate infrastructure; a shortage of medicines; and a virtually unregulated private sector.  As a World Bank official explained:  “If we expect the health system to perform well and there are weaknesses in the structure for reproductive health, immunization services, etc., it can’t suddenly be super-effective for HIV/AIDS control programs.”⁴³

In July 2003, the World Bank noted that India's “progress in health indicators has been slowing down precipitously.”⁴⁴  Dalits and indigenous groups, as well as people in rural areas generally, have much less access to health services and worse health outcomes than upper castes, especially those living in urban areas.⁴⁵

India’s public spending on health as a percentage of gross domestic product ranks among the lowest in the world, standing at 0.9 percent in 2000.⁴⁶  Per capita spending on health was U.S.$71 in 2000.⁴⁷  According to the World Bank, this “is lower than what most low-income countries spend, and it is far below what is needed to provide basic health care to the population.”⁴⁸  Public spending has also prioritized curative care that, on average, has gone to benefit the rich much more than the poor.⁴⁹  Many public facilities charge user fees for their services, an additional burden on the poor.⁵⁰  Some argue that even without additional resources, India has the capacity to provide basic health care for its citizens, were its resources more equitably distributed.⁵¹

The delivery of public health care lies primarily with the states.  Poorer states, such as Bihar and Madhya Pradesh, spend much less per capita than richer states, such as Kerala and Tamil Nadu, and have significantly worse health outcomes.⁵²  Although the central government funds some national programs—for example, for HIV/AIDS, family welfare, malaria, leprosy, blindness, and tuberculosis—international donors, including the World Bank, are supporting decentralization of these programs to the states.⁵³ 

On World AIDS Day 2003, then-Union Health Minister Sushma Swaraj announced that the government would begin providing antiretroviral therapy free of cost to up to 100,000 people in the six states officially considered to be high-prevalence.⁵⁴  Persons in the following categories would be eligible:  mothers who participated in prevention of mother-to-child transmission programs in government antenatal clinics, children under age fifteen, and people with AIDS presenting at government hospitals.⁵⁵  The Chief Minister of Kerala, which was not one of the states included in the central government’s program, announced on December 29, 2003, that the state would also provide free antiretroviral therapy.⁵⁶  At the time of writing, small numbers of people living with AIDS in certain areas of the designated states and Delhi had begun to receive antiretroviral drugs.⁵⁷

Around 80 percent of Indians are estimated to use private health care services that, as one U.N. official described them, range “from quacks up to excellent private physicians.”⁵⁸  According to the World Bank, the “largest type” of private health practitioners are “completely unqualified” and used “mainly used by the poor.”⁵⁹  Private practitioners are sometimes the only option when public health facilities are far away or lack basic supplies.

India’s Education System

Millions of India’s 400 million children are out of school.⁶⁰  Although figures vary widely, according to the U.N. Educational, Scientific and Cultural Organization (UNESCO), around 83 percent of primary school-aged children were enrolled in school in 2000-2001, but only around 47 to 59 percent of students made it to grade five.⁶¹  Proportionately fewer girls than boys attend school, and those that do, drop out at higher rates; a third of the adult population, including almost half of all women, is illiterate.⁶²  Dalits also have higher illiteracy and drop-out rates and face significant discrimination in education.⁶³  Both literacy and school enrollment rates overall have improved in the last decade, but millions of children remain illiterate and out of school.

Under the Indian Constitution, the state is obligated to provide free and compulsory education to all children ages six to fourteen.⁶⁴  The central and state governments are jointly responsible for education, but in practice, states and local bodies finance and control the vast majority of schools in India, with the central government providing guidance and oversight, and directly administering only a small number of schools.⁶⁵ 

India spent 4.02 percent of its gross domestic product on education in 2001-2002, representing little change from 1994 and a failure to reach the 6 percent minimum promised by the government in its 1986 National Policy on Education.⁶⁶  Compared with other countries of similar per capita incomes, spending on education “is skewed somewhat toward the secondary level and considerably toward higher education.”⁶⁷  The Committee on the Rights of the Child, which interprets and monitors compliance with the Convention on the Rights of the Child, in 2004 expressed concern “at the slow increase of the budget allocations for education.”⁶⁸  According to the World Bank, “[u]niversalizing the completion of schooling through the fifth standard [grade] and then through the eighth, across all Indian states will require additional public resources for these level of education and improvements in the effectiveness of using public resources.”⁶⁹

Although there are wide variations from state to state, many government schools are in dismal condition, without basic drinking water and toilet facilities, electricity, roof, walls, floors, or blackboards; teaching posts are often vacant or teachers absent, especially in rural areas, and teachers may not teach when they do attend.⁷⁰  Classes are often very large and teaching materials in short supply.⁷¹

Private schools, including those run by religious organizations, play a significant and expanding role, although they are less accessible to rural and Dalit children.⁷²  Even very poor parents may send their children to some form of private school, if they can manage the fees or get a scholarship, particularly when government schools are far away or of poor quality.⁷³

Many private schools receive significant government funds; these are known as “private-aided schools.”  Private schools must apply for government recognition if their students are to take the tenth grade national examinations, and private-aided schools also need recognition to receive government funding.⁷⁴  In order to be recognized, private schools must agree to follow the national curriculum and adhere to certain minimum standards of quality; according to an official in the Ministry of Education Elementary Education Department, most states grant recognition very liberally but would, in theory, have the power to withdraw recognition from schools that discriminate.⁷⁵

International donors to education in India include the European Commission, the Netherlands government, the World Bank, the United Kingdom’s Department for International Development (DFID), and UNICEF.⁷⁶  In 2004, the European Commission, DFID, the World Bank, and the Indian government announced a U.S.$3.5 billion project, including a U.S.$500 million credit from the International Development Association (IDA), the World Bank’s concessionary lending arm, to support India’s national program for universal elementary education, Sarva Shiksha Abhiyan.