NGOs and HIV/AIDS advocacy in India: Identifying the challenges

South Asia: Journal of South Asia Studies

Volumn 34, Issue 1, 2011, Pages 65-88

  Lawrence, Pareena G ^a   Brun, Maria C ^b  

^a UNIVERSITY OF MINNESOTA   (United States)

^b LONDON SCHOOL OF ECONOMICS   (United Kingdom)

Author keywords

challenges to NGOs; corruption; cultural challenges; donors; epidemic; funding; HIV AIDS

Indexed keywords

ACCOUNTABILITY; ACQUIRED IMMUNE DEFICIENCY SYNDROME; CORRUPTION; EPIDEMIC; HUMAN IMMUNODEFICIENCY VIRUS; NONGOVERNMENTAL ORGANIZATION; PUBLIC ATTITUDE;

INDIA;

EID: 79952633998     PISSN: 00856401     EISSN: 14790270     Source Type: Journal    
DOI: 10.1080/00856401.2011.549085     Document Type: Article

References (86)

1. Jaya Shreedar, Daniel Pepper and Geoffrey Cowley, 'A Tale of Two Indias: On the Cusp: The Country Stands on the Brink of an Africa-Style Disaster, Things may be Turning Around in the South', Newsweek (June 2006) [http://www.newsweek. com/2006/06/04/a-tale-of-two-indias.html, accessed 10 Nov. 2010].
2. The number of people living with HIV/AIDS in India is now estimated to be 2.47 million, less than half of previous official estimates. The new figure was calculated with the help of the United Nations and United States Agency for International Development. This new population-based survey took blood samples from 102,000 people to test for HIV among the general public as opposed to specific groups. Population-based surveys are generally 'more representative' and generate 'more accurate information' for rural areas and for men compared with surveys based on people who go to government clinics. Kamil Zaheer, 'India's HIV Cases Highly Overestimated, Survey Shows', Times of India (7 July 2007) [http://www.reuters.com/article/ idUSDEL289031, accessed 10 Nov. 2010];
3. and Department of AIDS Control, Ministry of Heath and Family Welfare, Annual Report 2009-2010 [http://www.nacoonline.org/upload/AR%202009-10/ NACOāR- English%20corrected.pdf, accessed 25 Nov. 2010]. These figures are currently under scrutiny by various HIV/AIDS advocacy organisations.
4. Robert Steinbrook, 'HIV in India: A Complex Epidemic', in New England Journal of Medicine, Vol.356, no.11 (Mar. 2007), pp.1089-93;
5. and Amit Sen Gupta, 'Faltering Progress in Combating Infectious Diseases: India's Record in Achieving Millennium Development Goals', India Current Affairs (26 July 2010) [http://indiacurrentaffairs.org/faltering-progress-in- combating-infectious-diseases-india%E2%80% 99s-record-in-achieving-millennium- development-goals-amit-sen-gupta/, accessed 25 Nov. 2010].
6. A state is defined as a high prevalence state if more than 5 percent of patients visiting clinics for STD treatment and more than 1 percent of women visiting for prenatal care test positive for HIV.
7. Steinbrook, 'HIV in India: A Complex Epidemic', pp.1089-93.
8. Peter Wonacott, 'In India, HIV Threatens Economy', The Wall Street Journal (21 July 2006).
9. Gupta, 'Faltering Progress in Combating Infectious Diseases: India's Record in Achieving Millennium Development Goals'.
10. Jayati Ghosh, 'A Geographic Perspective on HIV/AIDS in India', in Geographical Review, Vol.92, no.1 (2002), pp.114-26.
11. Shankar Raghuraman, 'India to Lose 16m to AIDS by "26"', The Times of India (10 Aug. 2006).
12. Suniti Solomon and Aylur Kailasam Ganesh, 'HIV in India', in International AIDS Society-USA. Vol.10, no.3 (2002), pp.19-24.
13. Mead Over, Peter Heywood, Julian Gold, Indrani Gupta, Subhash Hira and Elliot Marseille, HIV/AIDS Treatment and Prevention in India: Modeling the Cost and Consequences (Washington, DC: World Bank, 2004), p.17.
14. Ministry of Health and Family Welfare, Government of India, National AIDS Control Organisation (2007) [http://www.nacoonline.org/, accessed 27 Sept. 2009].
15. Over et al, HIV/AIDS Treatment and Prevention in India: Modeling the Cost and Consequences.
16. Robert Steinbrook, 'HIV in India: The Challenges Ahead', in New England Journal of Medicine, Vol.356, no.12 (Mar. 2007), pp.1197-1201.
17. Ibid,.
18. Marika Vicziany, 'The Political Economy of HIV/AIDS in India', in Paul Harris and Patricia Siplon (eds), The Politics of HIV/Aids in Asia (Boulder: Lynne Reinner Publishers, Inc., 2007), p.111.
19. Ministry of Health and Family Welfare, National AIDS Control Organization (2007) [http:// www.nacoonline.org/, accessed 27 Sept. 2009].
20. Ibid,.
21. N.S. Deodhar, 'Review of the National HIV/Aids Control Programme in India with a View to Making It Community-Oriented, More Effective, and Sustainable', in Journal of Public Health Policy, Vol.24, no.2 (2003), p.159.
22. 'HIV/AIDS Epidemiological Surveillance and Estimation Report for the Year 2005', National AIDS Control Organization (2006) [http://www.nacoonline.org/, accessed 1 Sept. 2006].
23. 21 Ministry of Health and Family Welfare, Government of India, National AIDS Control Organization, 'NACP-III' [http://www.nacoonline.org/Nationalhttp:// www.nacoonline.org/NationalāIDS-Control- Program/, accessed July 2009].
24. Deodhar, 'Review of the National HIV/Aids Control Programme in India with a View to Making it Community-Oriented, More Effective, and Sustainable', p.163. STD stands for Sexually Transmitted Disease and STI stands for Sexually Transmitted Infection.
25. Paul G. Harris and Patricia D. Siplon, The Global Politics of AIDS (Boulder: Lynne Reinner Publishers, Inc., 2007), p.22.
26. Ibid,.
27. Vicziany, 'The Political Economy of HIV/AIDS in India', p.109.
28. Vicziany, 'The Political Economy of HIV/AIDS in India ,Ibid, p.111.
29. Upasana Bhat, 'Prostitution "Increases" in India', BBC News, South Asia (3 July 2006) [http:// news.bbc.co.uk/2/low/southāsia/5140526. stm, accessed 24 June 2007].
30. Over et al, HIV/AIDS Treatment and Prevention in India: Modeling the Cost and Consequences.
31. Alan Whaites, 'Let's Get Civil Society Straight: NGOs, the State, and Political Theory', in Deborah Eade (ed.), Development, NGOs, and Civil Society (Oxford: Oxfam, 2000), p.124.
32. Rita Anand and Umesh Anand, 'India Needs its NGOs', in Harvard International Review [http:// hir.harvard.edu/index.php?page=article&id= 1465&p=, accessed 28 Sept. 2009].
33. The NAZ Foundation (India) Trust [http://www.nazindia.org/about.htm].
34. NAZ was the first organisation to advocate for an official court ruling to decriminalise MSM. See 'Gay Ruling; Happy Ending to Battle that began in 2001', The Times of India (3 July 2009) [www.timesofindia.indiatimes.com, accessed 14 July 2009].
35. See also Yuvraj Joshi, 'The Case for the Repeal of India's Sodomy Law', in South Asia: Journal of South Asian Studies, Vol.33, no.2 (Aug. 2010), pp.304-17. An appeal was filed in the Supreme Court but the court declined to stay the High Court verdict, saying it would wait for the government to come out with a definite stand on the issue.
36. The NAZ Foundation (India) Trust [http://www.nazindia.org/about.htm].
37. 'Overview of HIV and AIDS in India', Avert [http://www.avert.org/ aidsindia.htm, accessed 1 Sept. 2006].
38. Tamil Nadu AIDS Control Society [http://www.tansacsmis.org/, accessed 5 June 2006].
39. Rural Institute for Development Education [http://www.rideindia.org/, accessed 5 Aug. 2005].
40. Interviews at NAZ and RIDE, 2007-08.
41. Whaites, 'Let's Get Civil Society Straight: NGOs, the State, and Political Theory', p.241.
42. UNAIDS [http://www.unaids.org/en/Regions-Countries/Countries/india.asp, accessed 18 July 2007].
43. In fact the doctors can charge a large fee in private practice while continuing to draw a salary from the public coffers. This was witnessed by one of the authors when she visited two hospitals in New Delhi in summer 2007.
44. Author observation, 2007.
45. '40% of Indians Shun Doctors Who Treat HIV Patients: Survey', Infochange [www.hivaidsonline.in, accessed 13 July 2009].
46. Author observation, New Delhi, 2007.
47. 'Less than 10 Percent of India's HIV-Positive People get Free Drugs: Report', International Herald Tribune (8 Dec. 2006) [http://www.iht.com/ articles/ap/2006/12/08/asia/AS-MEDīndiaāIDS-Treatment.php, accessed 18 June 2007]. Antiretroviral medicine is supposed to be free from the government-run centres sponsored by NACO.
48. Interview, NAZ, 2007. The only official provision for children is under NACP-III, but it only covers children infected with the disease. NACO states: 'Approximately 50,000 children below 15 years are infected by HIV every year. So far, care and support response to these children was at a very minimal level. NACP-III plans to improve this through early diagnosis and treatment of HIV exposed children; comprehensive guidelines on paediatric HIV care for each level of the health system; special training to counsellors for counselling HIV positive children; linkages with social sector programmes for accessing social support for infected children; outreach and transportation subsidy to facilitate ART and follow up, nutritional, educational, recreational and skill development support, and by establishing and enforcing minimum standards of care and protection in institutional, foster care and community-based care systems'. National AIDS Control Organization [http://www.nacoonline.org/, accessed 27 Sept. 2009].
49. Interview, NAZ, 2008. Most research in the field of psychology and health education indicates that the best way for people to protect themselves against HIV/AIDS is through education (safe sex education or abstinence), and by changing the high-risk behaviour of individuals (having unprotected sexual contact with partners and sharing needles with an infected person). See Charles Abraham and Paschal Sheeran, 'In Search of a Psychology of Safer-Sex Promotion; Beyond Beliefs and Texts', in Health Education Research, Vol.8, no.2 (1993), pp.245-54; (Pubitemid 23185827)
50. and Eva S. Lefkowitz, Tanya L. Boone, Terry Kit-fong Au and Marian Sigman, 'No Sex or Safe Sex? Mothers' and Adolescents' Discussions about Sexuality and AIDS/HIV', in Health Education Research, Vol.18, no.3 (2003), pp.341-51. However given the conservative nature of Indian society it has been difficult to advocate for sex education, particularly safe sex, in schools. (Pubitemid 36749239)
51. Funding of this type comes from large donor nations such as the United States, Germany and Japan, through official development assistance that gives financial assistance directly to the Indian government. It in turn then uses these funds for social development and other programs via NGOs and other government organisations.
52. Interview, NAZ, 2007.
53. Michael Edwards and David Hulme, 'Too Close for Comfort? The Impact of Official Aid on Nongovernmental Organizations', in World Development, Vol.24, no.6 (2003), pp.961-73.
54. Anthony Bebbington, 'Donor-NGO Relations and Representations of Livelihood in Nongovernment Aid Chains', in World Development, Vol.33, no.6 (2005), pp.937-50. (Pubitemid 40717218)
55. Faranak Miraftab, 'Flirting with the Enemy: Challenges Faced by NGOs in Development and Empowerment', in Habitat International, Vol.21, no.4 (1997), p.367.
56. Ibid,.
57. Interviews, NAZ, 2006-08.
58. Alnoor Ebrahim, 'Accountability in Practice: Mechanisms for NGOs', in World Development, Vol.31, no.5 (2003), pp.813-29. (Pubitemid 36524981)
59. Janet Townsend, Gina Porter and Emma Mawdsley, 'Creating Spaces of Resistance: Development NGOs and their Clients in Ghana, India, and Mexico', in Antipode, Vol.36, no.5 (2004), pp.871-9.
60. Mechai Viravaidya and Jonathan Hayssen, 'Strategies to Strengthen NGO Capacity in Resource Mobilization Through Business Activities', PDA and UNAIDS Joint Publication (2001) [http:// data.unaids.org/publications/irc-pub06/jc579- strategies-ngo-en.pdf, accessed 8 Nov. 2010].
61. Interview, NAZ, 2007.
62. Return on investment is measured by the potential economic and non-economic contribution of individuals. An individual who does not contract HIV/AIDS because of prevention-related advocacy can contribute more to society than someone who has contracted the disease who is not as economically productive.
63. Children who are HIV positive provide a lower return to donor investment as they have several years before they can make an economic contribution to society and the probability that they will reach that age and be productive given current conditions is often questioned by donors.
64. Interview, NAZ, 2008.
65. Townsend, Porter and Mawdsley, 'Creating Spaces of Resistance: Development NGOs and their Clients in Ghana, India, and Mexico', pp.871-9.
66. Richa Nagar and Saraswati Raju, 'Women, NGOs and the Contradictions of Empowerment and Disempowerment: A Conversation', in Antipode, Vol.35, no.1 (2003), pp.1-13.
67. Townsend, Porter and Mawdsley, 'Creating Spaces of Resistance: Development NGOs and their Clients in Ghana, India, and Mexico', pp.871-9.
68. Interviews with directors of NAZ and RIDE, 2007-08.
69. Discussions with RIDE personnel, 2007.
70. Johnson & Johnson is one of the donors to the NAZ Foundation (India) Trust.
71. An example of a Canadian team of researchers working with an international NGO in New Delhi was provided. This team was working with sex workers in Delhi and was headed by expatriates who were insensitive towards, and dismissive of, Indian culture and Indian people, which created extremely hard feelings among the staff and clients. Author's conversation with NAZ and RIDE personnel, 2007.
72. Interview, NAZ, 2008.
73. Nagar and Raju, 'Women, NGOs and the Contradictions of Empowerment and Disempowerment: A Conversation', p.3.
74. Interview, RIDE, 2008.
75. Ibid,.
76. Ibid,.
77. Edwards and Hulme, 'Too Close for Comfort? The Impact of Official Aid on Nongovernmental Organizations', pp.961-73.
78. Ibid,.
79. Steinbrook, 'HIV in India: A Complex Epidemic', p.1090.
80. Rob Moodie and Tamara Aboagye-Kwarteng, 'Confronting the HIV Epidemic in Asia and the Pacific: Developing Successful Strategies to Minimize the Spread of HIV Infection', in AIDS, Vol.7, no.12 (1993), pp.1543-51. (Pubitemid 24008845)
81. Interview, NAZ, 2006.
82. Ibid,.
83. The devadasi system is the religious practice whereby parents marry their daughter to the god or goddess of a temple. The marriage usually occurs before the girl reaches puberty and requires her to become a prostitute for upper-caste community members upon puberty. A report by Human Rights Watch confirms this practice is still current in southern and western India. See Human Rights Watch, 'Broken People: Caste Violence Against India's "Untouchables"' (Mar. 1999) [http://www.hrw.org/reports/1999/india/].
84. See also Nagendra Kumar Singh, Divine Prostitution (New Delhi: A.P.H. Publishing Corporation, 1997).
85. Similar to the devadasi system, the matha (mother) system is prevalent in south India particularly among Dalits. Often a female child is dedicated to the temple at a young age but begins her service once she attains puberty. On the first day there is a big ceremony and the young girl is auctioned to the highest bidder. The belief is that these girls serve God by earning money in the name of religion and culture. Eventually these women are sold to brothels and live their lives as prostitutes.
86. The Self Respect Movement started in Tamil Nadu in the early 1900s and has its roots in overthrowing caste-based suppression. It calls for the rejection of all caste-based submission. It also calls on the upper castes to integrate fully with the lower castes by accepting the equality of man. One of the movement's sayings is as follows: 'Man must remove by himself his feeling of inferiority, the feeling that he is lesser born than other beings, and attain self-confidence and self-respect'. See Periyar's Movement (2010) [http:// www.countercurrents.org/dalit-periyar280603.htm, accessed 29 Nov. 2010].