India: Future Forsaken - Abuses Against Children Affected .
Future ForsakenAbuses Against Children Affected byHIV/AIDS in IndiaHuman Rights Watch
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Future ForsakenAbuses Against Children Affected by HIV/AIDSin IndiaMAP .1GLOSSARY.2I. SUMMARY .5II. BACKGROUND. 17HIV/AIDS in India.17Government Bodies Responsible for HIV/AIDS-AffectedChildren .20NACO and the State AIDS Control Societies . 20Other Responsible Government Bodies. 23Funding to Address HIV/AIDS in India.25India’s Education and Health Systems .27India’s Health System. 28India’s Education System . 32III. DISCRIMINATION AGAINST CHILDRENAFFECTED BY HIV/AIDS . 36Violations of the Right to the Highest Attainable Standard ofHealth.39Discrimination by Health Care Providers. 42Inaccessible Medical Care. 52Inaccessibility of Basic Drugs and Equipment . 53Access to Antiretroviral Therapy . 56
Lack of Psychological and Emotional Health Care forHIV/AIDS-Affected Children. 57Domestic and International Law on the Right to the HighestAttainable Standard of Health . 59Sharmila A.62Violations of the Right to Education.63Denial of Access to School . 64Cases of Children Excluded from School . 67Bency and Benson. 67Other Cases. 70Discriminatory Treatment in School . 75Other Barriers to Education . 76Ravi K. 77School Fees and Related Costs. 78Domestic and International Law on the Right to Education . 83Gender Discrimination and Increased Vulnerability ofHIV/AIDS-Affected Children .85The Government’s Response to Discrimination AgainstChildren Affected By HIV/AIDS.96International and Domestic Law and Policy on Discrimination. 96Government Action to Address Discrimination . 104Recognition of the Problem. 104Official Responses to Cases of Discrimination . 106Combating Discrimination with Information . 109Educating Children About HIV/AIDS. 111Educating Professionals and the General Public. 118Sunita B. and Nisha B. . 122IV. PROTECTION OF ORPHANS AND OTHERVULNERABLE CHILDREN . 126Children in Need of Care: Testimonies of Children andParents . 129
Lalita R. . 129Other Children’s Testimonies. 132Other Vulnerable Children. 140Street Children. 141Child Sex Workers . 142Working Children . 144The Government’s Responsibility for Children in Need ofCare and Protection . 149International and Domestic Legal Framework . 150Official Denial of AIDS Orphaning and Orphans Living withHIV/AIDS . 155Harms of Institutionalization. 158Institutions Rejecting HIV-Positive Children . 159Alternatives to Institutionalization. 164V. RECOMMENDATIONS . 169Recommendations Regarding Discrimination. 169Additional Recommendations Regarding Health. 174Additional Recommendations Regarding Education . 174Additional Recommendations Regarding Protection ofOrphans and Other Vulnerable Children. 175VI. CONCLUSION . 177APPENDIX . 179ACKNOWLEDGMENTS . 205
MapThis map does not show the states of Chhattisgarh, Jharkhand, and Uttaranchal,which were created in 2000.1
GlossaryAIDS: acquired immune deficiency syndromeAntiretroviral treatment: medical treatment using drugs that combatHIV rather than just the opportunistic symptoms of HIV. These drugsdo not cure HIV but can, if successfully administered, slow and evenvirtually stop the proliferation of HIV in the body. This reducessusceptibility to other diseases and allows for longer and better quality oflife. However, in India, the drugs are not prescribed until a child'simmune system cells (CD4 count) fall below a certain level or the childis having serious symptoms.Dalit: literally meaning “broken” people, Dalit is a term first coined byDr. B. R. Ambedkar, one of the architects of the Indian constitution of1950 and revered leader of the Dalit movement. It was taken up in the1970s by the Dalit Panther Movement, which organized to claim rightsfor “untouchables,” and is now commonly used by rights activists.“Untouchables” are those at the bottom of, or falling outside of, India’scaste system. Administrative parlance now employs the term “scheduledcastes,” while rights activists and the population more generally employthe term “Dalits.”HIV: human immunodeficiency virusNACO: National AIDS Control Organization, an autonomous bodywithin the Ministry of Health and Family Welfare charged withimplementing the government’s response to HIV/AIDS prevention andcontrol.NGO: non-governmental organization2
Opportunistic infection: any infection or condition that takes theopportunity of a weakened immune system to cause disease. These mayinclude relatively common infections, which may cause little or no harmin a healthy person.Post-exposure prophylaxis (PEP): a short course of antiretroviraldrugs that can reduce the risk of contracting HIV following accidentalor occupational exposure or rape.Prevention of mother-to-child transmission: a term referring toprograms designed to reduce HIV transmission during pregnancy andchildbirth and through breastfeeding, most often including a shortcourse of antiretroviral drugs administered to mother and newborn thatgreatly reduces the risk of this transmission. The Indian governmentand others also use the phrase “parent-to-child transmission,”highlighting the fact that the other parent is often complicit in the factthat the mother is HIV-positive.Scheduled Castes: a list of socially deprived (“untouchable”) castesprepared by the British Government in 1935. The schedule of casteswas intended to increase representation of scheduled-caste members inthe legislature, in government employment, and in university placement.The term is also used in the constitution and various laws.Scheduled Tribes: a list of indigenous tribal populations who areentitled to much of the same compensatory treatment as scheduledcastes.3
I. SummarySix-year-old Anu P.’s teacher sent her home from kindergarten in 2003,instructing her older sister to tell her “please not to come again to theschool.”1 Her grandfather, who had been caring for Anu and hersiblings since their parents died of AIDS, explained, “The teacher didn’tallow her to come to school because she believes Anu is HIV-positive. Ibelieve that other parents were talking amongst themselves, so theteacher said she shouldn’t come.” Her grandfather told us he was afraidthat if he protested, Anu’s older sister might be sent out as well. Anearby 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 mangave, her uncle said, was because of HIV. Anu’s sixty-six-year-oldgrandmother had been taking her on foot to the government hospital,but the distance had become too far for her to walk, her grandfatherexplained.Sharmila A., age ten, was HIV-positive and had lost both of her parentsto AIDS.2 She stopped going to school in the fourth grade, she said.“When I went to school, I sat separately from the other children, in thelast mat. I sat alone. The other children wanted to be with me, but theteacher would tell them not to play with me. She said, ‘This disease willspread to you also, so do not play with her.’” When Sharmila developedtuberculosis, she began traveling some four to five hours to reach agovernment-run hospital for free medical care. However, the hospital1Human Rights Watch group interview with Anu P., her brother and sister, hergrandparents, and her uncle, Sangli, Maharashtra, November 27, 2003. Except whereindicated, the names of all children and all people affected by HIV/AIDS have beenchanged in this report to protect their privacy.2Human Rights Watch interview with Sharmila A., her grandmother, and staff of a localNGO, Ariyalar district, Tamil Nadu, November 15, 2003.5
Future Forsakendid not provide antiretroviral drugs, and her health did not improve.Sharmila died in January 2004.Kannammal P. put her oldest daughter in an orphanage when shebecame unable to care for all of her children, she told us.3 Shortlythereafter, her husband was diagnosed with HIV. She went back to theorphanage and asked them for help. Instead, she said, “they asked thechild to be tested, and then they wanted her to leave. . . . Despitepleading with the school authorities, they said, ‘Sorry, please findanother place. We are not free to take her.’” Her daughter’s HIV test,she told us, was negative.*****Millions of Indians, including at least hundreds of thousands of children,are living with human immunodeficiency virus/acquired immunedeficiency syndrome (HIV/AIDS). Many more children are otherwiseseriously affected by India’s burgeoning epidemic—when they areforced to withdraw from school to care for sick parents, are forced towork to replace their parents’ income, or are orphaned (losing one orboth parents to AIDS).Yet HIV/AIDS-affected children, including those living with thedisease, are nearly invisible in the Indian government’s policy responseto the country’s devastating epidemic. Children affected by HIV/AIDSare being discriminated against in education and health services, deniedcare by orphanages, and pushed onto the streets and into the worstforms of child labor. Gender discrimination makes girls morevulnerable to HIV transmission and makes it more difficult for them to3Human Rights Watch interview with Kannammal P., Chennai, Tamil Nadu, November 10,2003.6
Summaryget care. Many children, especially the most vulnerable, as well as theprofessionals who care for them, are not getting the information aboutHIV they need to protect themselves or to combat discrimination. Thisreport documents abuses against India’s HIV/AIDS-affected childrenand calls on the Indian government to recognize their plight and to takeimmediate action to protect them from discrimination and exploitation.All of India's states have reported AIDS cases, and in at least six states,according to the government, HIV/AIDS has spread beyond personsconsidered “high risk” to the general population. Among youngchildren especially, perinatal transmission is the most common source;however, children in India are also acquiring HIV through sexualcontact, including sexual abuse; blood transfusions; and unsterilizedsyringes, including injection drug use. Most of those dying of AIDS arebetween fifteen and forty-nine years old, the age when many are raisingchildren. The number of AIDS orphans has not been adequatelymeasured, but some calculate more than a million children under agefifteen in India have lost one or both parents to AIDS, and that thenumbers are growing.Although India’s HIV/AIDS policy has sorely neglected children, somegovernment officials have started to speak out about the need to reachchildren who are seen to be “innocent victims.” The government hasalso begun programs designed to prevent the transmission of HIV frommother to child.4 However, the exclusive focus on persons considered“high-risk” and the moral judgment that has colored the government’sresponse and, in turn, the public’s perception, have obscured the4See, e.g., Meenakshi Datta Ghosh, Additional Secretary and Project Director, NationalAIDS Control Organization (NACO), Ministry of Health and Family Welfare, Government ofIndia, National AIDS Control Programme India: A Paradigm Shift, powerpoint presentationdelivered November 11, 2003, slide entitled “(ii) Children below 15 years, infected with HIV”(stating “These children do not need the stigma, having contracted HIV through no fault oftheirs”).7
Future Forsakensituation of children.Government and internationally-
Future Forsaken Abuses Against Children Affected by HIV/AIDS in India Human Rights Watch
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