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IV. BACKGROUND: HIV/AIDS IN INDIA
The first case of HIV in India was reported in Madras (now Chennai) in 1986.6 Though classified by the United Nations as a "low-prevalence" country, India has one of the most serious AIDS epidemics in the world. Official figures put the number of HIV-positive persons at 3.97 million,7 the second highest national total of persons with AIDS after that of the Republic of South Africa. This figure has been widely disputed, however, with some experts asserting that the actual number of persons living with HIV/AIDS in India is more than double the official figure.8 If the official figure is correct, then the rate of new infection in the HIV/AIDS epidemic in India is actually declining, which many experts dispute and which would contradict the course the epidemic has followed elsewhere in the world.9 The late Ashok Pillai, president of the Indian Network for People Living with HIV/AIDS, disputed the official figure and told Human Rights Watch that in government and United Nations meetings he had attended, various experts had urged the government to endorse a higher figure. "The government want to send the signal that they are doing well on AIDS, but the real figure they won't let be told," he said.10 The official prevalence rate of HIV/AIDS in the adult population is 0.7 percent. Because of the size of India's population, each 0.1 percent increase in prevalence represents about half a million persons infected. 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.11 The disease has spread beyond high-risk groups into the general population in a number of states and municipalities. The five states in which it is officially acknowledged that more than 1 percent of the adult population is infected-thus considered high-prevalence areas-are Andhra Pradesh, Karnataka, Maharashtra, Manipur, and Tamil Nadu.12 Some districts in Goa, Gujarat and Nagaland are also high-prevalence zones. At both central and state level, the government has sponsored mass-media and other information campaigns at various times since it launched a national anti-AIDS program in 1987. Detailed knowledge and behavior surveys conducted in Tamil Nadu, the state with the greatest number of reported cases of AIDS and the second highest HIV prevalence rate in the adult population, show that there has been progress since the late 1980s among several groups in that state with respect to certain indicators, including use of condoms and use of condoms during paid sex.13 Nonetheless, these surveys showed, for example, that only 39 percent of women working in factories, a group representing middle-class women, knew that condoms prevent sexually transmitted diseases, a percentage that has changed little since the mid-1990s.14 The surveys also estimated that about 35 percent of young men in slums in the state understand basic prevention of HIV/AIDS "without misconception."15 There is virtually no formal teaching of HIV/AIDS information in public schools in Tamil Nadu or the rest of the country,16 though NGOs in some states have developed short-course modules that are used in selected public and private schools.17 Antiretroviral (ARV) drugs are manufactured in India, but generic ARV drug combinations still cost from Rs. 1000 to Rs. 2000 (about U.S. $20 to $40) per month. No government-supported programs exist to provide antiretroviral treatment to persons with HIV/AIDS. The recently released national AIDS policy takes the position that "treatment options are still in the initial trial stage and are prohibitively expensive."18 Persons in traditional high-risk groups-notably men who have sex with men, women in prostitution, and injecting drug users-face social marginalization and deep stigma in India.19 While the epidemic has spread to the general population in some states, these high-risk persons remain crucial to the national AIDS control strategy. Various studies have reported very high rates of HIV prevalence among these groups. A fact sheet of the Joint United Nations Programme on HIV/AIDS (UNAIDS) in January 2002 noted that in Mumbai, for example, an estimated 60 percent of women in prostitution were HIV-positive.20 Survey data from Manipur in northeast India reported HIV prevalence rates ranging from 45 percent to 76 percent among injecting drug users during the 1990s.21 Data on HIV prevalence among men who have sex with men are scarce, which some experts attribute to the government's denial of the fact that men have sex with men in the country.22 The only figures reported by the government are from recent surveys in Mumbai, where 23.6 percent of men who have sex with men were estimated to be HIV-positive, and Tamil Nadu, where the corresponding figure was 2.4 percent.23 The stigma faced by women in prostitution and men who have sex with men is seen by many to be an important impediment to reaching these populations with HIV/AIDS information, condoms and other services related to prevention. Women in prostitution face the second-class citizenship that characterizes their status in many countries, and the mainstream women's movement in India has not generally embraced the rights of women in prostitution as a high-priority cause.24 Many observers have noted widespread denial of the existence of sex between men in India. As Siddharth Dube, an internationally recognized expert on HIV/AIDS in India, put it:
In addition to the stigma and discrimination faced by high-risk persons, a wide range of human rights abuses associated with HIV/AIDS have been reported in India, many of which were discussed in a national consultation on human rights and HIV/AIDS organized by the National Human Rights Commission in November 2000.27 Such abuses include discrimination against HIV-positive persons in employment and in access to health care, education, housing, and legal services; mandatory HIV testing, especially in some health care facilities, and violation of the confidentiality of testing; disinheritance, abandonment, violence and other abuses faced by wives and widows of men with HIV/AIDS; and denial of the right to information on HIV/AIDS, particularly for young people. A National AIDS Control Programme was established in 1987, and the National AIDS Control Organization (NACO), which currently oversees the government's anti-AIDS efforts, was founded in 1992. The national program to combat HIV/AIDS of the government of India is funded largely by a World Bank loan of about U.S. $200 million, the second such HIV/AIDS loan for the country. The first project, which ran from 1992 to 1999 and had a budget of about U.S. $100 million, helped to establish NACO and state-level AIDS coordinating bodies (the State AIDS Control Societies), developed capacity for surveys of HIV prevalence, and helped India to expand its program of preventive activities and improve blood screening.28 In the second project, about 23 percent of the budget is meant to support "targeted interventions" with high-risk groups, of which women in prostitution, men who have sex with men, and injecting drug users are explicitly named along with truck drivers and migrant laborers. (These groups together are estimated to constitute 5 percent of the country's population.29) As the World Bank project appraisal document notes,
The national AIDS policy that was approved by the Union Cabinet in April 2002 also mentions these populations as groups exhibiting high-risk behavior, particularly in the urban environment.31 The strategy of the program for reaching high-risk groups is "partnering with NGOs and CBOs [community based organizations]-organizations that have a long history of addressing the needs of marginalized populations," combined with measures to "decentralize planning, encourage participation of beneficiaries, and build capacity among NGOs in order to maximize the effectiveness of targeted interventions."32 The current World Bank-funded program recognizes explicitly the importance of protection of human rights related to HIV/AIDS in India. The program "supports the protection of human rights by discouraging mandatory testing for HIV and places special emphasis on voluntary testing and counseling . . . . Furthermore, stigmatized groups (HIV-positive people; people living with AIDS or PLWAs; and groups at high risk of infection) would be represented on AIDS Control Societies [at state level]."33 6 Michael Spencer, "India's Plague," New Yorker, December 17, 2001, p. 77. 7 Government of India, National AIDS Control Organisation, "Estimation of HIV infection among adult population: HIV estimates for year 2001," www.naco.nic.in/vsnaco/indianscene/update.htm (consulted April 9, 2002). 8 See, e.g., S. Ramasundaram, "Can India avoid being devastated by HIV?" British Medical Journal, vol. 324, pp. 182-183, January 26, 2002, and "India may soon have half the world's AIDS patients," Hindustan Times, July 12, 2000. 9 See, e.g., Kalpana Jain, "An epidemic of missing HIV patients," Times of India, September 10, 2001, and Poornima Joshi, "AIDS growth rate dips," Hindustan Times, July 7, 2001. 10 Human Rights Watch interview, Ashok Pillai, president, Indian Network for People Living with HIV/AIDS, Chennai, March 18, 2002. (Ashok Pillai died on April 19, 2002.) 11 World Bank, "UNGASS-Regional Updates: South Asia Region (India)," June 2001, available at www.worldbank.org/ungass/India.htm (consulted April 9, 2002). 12 NACO, "Estimation of HIV infection. . . ." 13 AIDS Prevention and Control Project-Voluntary Health Services, "HIV Risk Behavior Surveillance Survey in Tamil Nadu and Pondicherry," Chennai: April 2002. 16 Sunder Lai, "Editorial: Reaching Adolescents for Health and Development," Indian Journal of Community Medicine, vol. 26, no. 4, October - December 2001, pp. 169-170. 17 Human Rights Watch interview, Dr. Suniti Solomon, director, YRG-Care, Chennai, March 18, 2002. 18 Government of India, National AIDS Control Organisation, "National AIDS Prevention and Control Policy," paragraph 1.2. 19 Siddharth Dube. Sex, Lies and AIDS (New Delhi: Harper Collins, 2000). 20 UNAIDS, "Vulnerable Populations (fact sheet)," January 2002, available at http://www.unaids.org/ partnership/pdf/INDIAvulnerable.pdf (consulted April 6, 2002). 21 Khondom Lisam, "Drug Abuse and HIV/AIDS in India," presentation to South and Southeast Asia Regional Meeting on Durg Use/HIV Dual Epidemics, Chiang Mai, December 12, 2001, available at
22 Dube, Sex, Lies and AIDS, p. 54. 23 NACO, "Estimation of HIV infection...," table entitled "HIV Prevalence Levels State-wise: 2001." 24 Human Rights Watch interview with Suneeta Dar, UNIFEM-India, New Delhi, April 2, 2002. 25 Hijras are transgender people and people with intersex conditions, many of them men who undergo castration. (Definitions from International Gay and Lesbian Human Rights Commission, see www.iglhrc.org/world/ s_asia/India2002Apr.html (consulted April 9, 2002). 26 Dube, Sex, Lies and AIDS, pp. 53-54. 27 National Human Rights Commission with National AIDS Control Organisation, Lawyers Collective, United Nations Children's Fund, and United Nations Joint Programme on HIV/AIDS, "National Conference on Human Rights and HIV/AIDS (New Delhi, 24-25 November 2000): Report," 2001. 28 The World Bank, Regional Update: South Asia-India, available at www.worldbank.org/html/extdr/ pb/pbaids_sar_india.htm (consulted April 9, 2002). 29 The World Bank, Project Appraisal Document on a proposed credit in the amount of SDR 140.82 to India for a Second National HIV/AIDS Control Project (Report No. 18918-IN), May 13, 1999. 31 Government of India, National AIDS Control Programme, "National AIDS Prevention and Control Policy," April 2002, paragraph 5.1.2. 32 World Bank , Project Appraisal Document, p. 12.
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