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ABSTRACT
This article explores the political and economic factors that are driving shifting data in the context of HIV. In order to measure progress towards the Sustainable Development Goal (SDG) 3.3 on health, global health agencies such as UNAIDS, the Global Fund to Fight AIDS, TB and Malaria, and PEPFAR all rely on HIV data routinely reported by countries. This data is not produced in a political vacuum. Key populations vulnerable to HIV (men who have sex with men, people who inject drugs, sex workers and transgender people) are often hidden due to stigma and criminalisation. However, the absence of this data creates a paradox in which invisibility reinforces invisibility. Key population size estimates are a central tool for planning and resourcing national and global HIV programming, but these become hard to obtain when key populations are hidden and political leaders deny their existence. Pressure from health financing agencies is changing these power dynamics in some countries. Key populations who participate in these consultations question size estimates, interrogate the politics of HIV data, and demand that studies be more inclusive, ethical and attuned to their human rights. In the fight against HIV, data is a critical stake in the struggle.
KEYWORDS:
Disclosure statement
I am reporting that at the time of writing this article I was a consultant to the chair and co-chair of the Implementers Group on the Board of the Global Fund to Fight AIDS, TB and Malaria. I have disclosed those interests fully.
Notes on contributor
Sara L. M. Davis (known as Meg) is a scholar in residence at New York University Center for Human Rights and Global Justice, and coordinator of courses on sexual violence at CERAH, the Geneva Center for Education and Research in Humanitarian Action. Davis earned her PhD at University of Pennsylvania, and is author of a book, Song and Silence: Ethnic Revival on China’s Southwest Borders (Columbia University Press, 2005). She lives in Geneva, Switzerland.
Notes
1 Based on review of the scientific evidence and consultation with experts, including key populations representatives themselves, WHO has defined key populations as: ‘Defined groups who, due to specific higher-risk behaviors, are at increased risk of HIV irrespective of the epidemic type or local context. Also, they often have legal and social issues related to their behaviors that increase their vulnerability to HIV. These guidelines focus on five key populations: 1) men who have sex with men, 2) people who inject drugs, 3) people in prisons and other closed settings, 4) sex workers and 5) transgender people. People in prisons and other closed settings are included in these guidelines also because of the often high levels of incarceration of the other groups and the increased risk behaviours and lack of HIV services in these settings’(WHO). In addition, WHO notes there are ‘vulnerable populations’ who are ‘particularly vulnerable to HIV infection in certain situations or contexts, such as adolescents (particularly adolescent girls in sub-Saharan Africa), orphans, street children, people with disabilities and migrant and mobile workers’. This article focuses on issues pertaining to key population size estimates and related HIV data gathered for the purposes of targeting programmatic interventions and measuring progress on the HIV response for men who have sex with men, sex workers, transgender people and people who inject drugs. All of these groups may be represented among prisoners; who are moreover a population that should be served by health services within prisons. For that reason, population size estimates are not normally done for prisoners.
2 World Health Organisation (WHO), Consolidated Guidelines HIV Prevention, Diagnosis Treatment and Care for Key Populations (Geneva: WHO, July 2014), http://www.who.int/hiv/pub/guidelines/keypopulations/en/ (accessed November 30, 2016).
3 Global Philanthropy Project, Perfect Storm: The Closing Space for LGBT Civil Society in Kyrgyzstan, Indonesia, Kenya and Hungary (Philadelphia: Global Philanthropy Project, April 2016).
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5 UNAIDS, The Gap Report (Geneva: WHO, 2014).
6 United Nations General Assembly (UNGA), Transforming Our World: The 2030 Agenda for Sustainable Development. Resolution A/RES/70/1, adopted September 25, 2015, paras 4, 8.
7 UNGA, Transforming Our World, page 14.
8 WHO and Joint UN Programme on HIV and AIDS (UNAIDS), Guidelines on Estimating the Size of Populations Most at Risk to HIV (Geneva: WHO, 2010), 7.
9 WHO and UNAIDS, Guidelines on Estimating the Size of Populations, 7.
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12 Amanda Holpuch, ‘UN Pledges to End AIDS Epidemic but Plan Barely Mentions those Most At Risk’, The Guardian, June 8, 2016, https://www.theguardian.com/society/2016/jun/08/un-hiv-aids-summit-gay-transgender-groups-excluded (accessed November 20, 2016).
13 Baral and Greenall, ‘The Data Paradox’.
14 Daniela C. Rodriguez, A. Whiteside and S. Bennett, ‘Political Commitment for Vulnerable Populations During Donor Transition’, Bulletin of the World Health Organization, October 16, 2016, http://www.who.int/bulletin/volumes/95/2/16-179861/en/ (accessed February 25, 2017).
15 UN General Assembly, International Covenant on Economic, Social and Cultural Rights, 16 December 1966. Entered into force January 3, 1976. United Nations Treaty Series, vol. 993, p. 3; Article 12.
16 ETO Consortium, The Maastricht Principles on Extraterritorial Obligations of States in the Area of Economic, Social and Cultural Rights (Heidelberg: 2013), principle 28.
17 Esom et al., African Key Populations' Engagement with Global Health Financing Institutions: A Rapid Review (Johannesburg: African Men for Sexual Health and Rights, July 2016).
18 Esom et al., African Key Populations, 9.
19 United Nations, Sustainable Development Goals Report 2016 (New York: UN, 2016); WHO, ‘MDG 6: Combat HIV/AIDS, malaria, and other diseases’ (December 2014), http://www.who.int/topics/millennium_development_goals/diseases/en/ (accessed November 20, 2016).
20 UNAIDS, Fast-Track Commitments to End AIDS by 2030 (Geneva: UNAIDS, 2016), http://www.unaids.org/sites/default/files/media_asset/fast-track-commitments_en.pdf (accessed February 25, 2017).
21 UNAIDS, Fast Track: Ending the AIDS Epidemic by 2020 (Geneva, UNAIDS: 2015).
22 UNAIDS, ‘Fast-Track Commitments to End AIDS by 2030’, 4.
23 UNAIDS, Global AIDS Response Progress Reporting 2015 Guidelines (Geneva: WHO, 2015); see also AIDSInfo, www.aidsinfo.unaids.org.
24 WHO and UNAIDS, Guidelines on Estimating the Size of Populations, 4–5
25 WHO and UNAIDS, Guidelines on Estimating the Size of Populations.
26 amfAR, ‘Following the Money to Key Populations, National Priorities, and Evidence-Based Budgeting’ (New York, July 2016), 1, http://www.amfar.org/uploadedFiles/_amfarorg/Articles/On_The_Hill/2016/Following%20the%20Money%20to%20Key%20Popu_070816v1145%20web.pdf (accessed February 25, 201).
27 Esom et. al., African Key Populations’ Engagement 20.
28 Esom et al., African Key Populations, 17.
29 Marlee Tichenor, ‘The Power of Data: Global Malaria Governance and the Senegalese Data Retention Strike’, in Metrics: What Counts in Global Health, ed. Vincanne Adams (Durham & London: Duke University Press, 2016), 105–24.
30 World Health Organization (WHO). MDG6: Combat HIV/AIDS, Malaria and Other Diseases. WHO website, December 2014. http://www.who.int/topics/millennium_development_goals/diseases/en/ (accessed July 27, 2017).
31 Jacob Levi, A. Raymond, A. Pozniak, P. Vernazza, P. Kohler and A. Hill, ‘Can the UNAIDS 90-90-90 Target Be Achieved? A Systematic Analysis of National HIV Treatment Cascades’, BMJ Global Health 1, no. 2 (2016), doi:10.1136/bmjgh-2015-000010.
32 Mark Heywood, ‘Op-ed: The Response to AIDS Has Shown Another World Is Possible’, Daily Maverick, July 19, 2016, http://www.dailymaverick.co.za/article/2016-07-19-op-ed-the-response-to-aids-has-shown-another-world-is-possible/#.WD3j13eZNE5 (accessed November 28, 2016).
33 Julian Hows, personal correspondence, November 4, 2016.
34 Kaiser Family Foundation and UNAIDS, Financing the Response to HIV in Low- and Middle-income Countries: International Assistance from Donor Governments in 2015 (Menlo Park, CA: 2016).
35 Kaiser Family Foundation and UNAIDS, Financing the Response.
36 Medecins Sans Frontières (MSF), TB Briefing Paper: An Overview of MSF’s Programmatic Use and Clinical Research with New TB Treatment Regimes (October 2016), https://www.msf.org.uk/sites/uk/files/TB_briefingpaper.pdf (accessed January 28, 2017).
37 Mike Frick, 2016 Report on Tuberculosis Research Funding Trends, 2011-15: No Time to Lose (New York: Treatment Action Group and Stop TB Partnership, 2016).
38 Margaret Chan, ‘Opening Remarks at the 2016 Financing Dialogue: Dr Margaret Chan, Director-General of the World Health Organisation’, (October 31, 2016), http://www.who.int/dg/speeches/2016/remarks-financing-dialogue/en/ (accessed November 29, 2016).
39 Matthew Kavanaugh, ‘Dear UNAIDS: Magical Thinking on Who Will Fund the AIDS Response Will Not End the Epidemic’, Healthgap blog, comment posted April 5, 2016, http://www.healthgap.org/dear_unaids (accessed February 27, 2017).
40 ‘Is the End in Sight?’, The Economist, July 26, 2014, http://www.economist.com/news/science-and-technology/21608568-campaigners-are-now-talking-openly-beating-aids-epidemic-end?utm_content=buffer56887&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer (accessed January 25, 2017).
41 The Global Fund to Fight AIDS, TB and Malaria, The Global Fund Corporate Key Performance Indicator Framework for 2014-16, GF/B30/7 (Revision 1), Thirtieth Board Meeting (November 7–8, 2013).
42 Sarah-Jane Anderson, P. Cherutich, N. Kilonzo et al., ‘Maximising the Effect of Combination HIV Prevention through Prioritisation of the People and Places in Greatest Need: A Modelling Study’, The Lancet 384, no. 9939 (2014), 249–56.
43 UNAIDS, ‘Identifying Populations at Greatest Risk of Infection: Geographic Hotspots and Key Populations’ (meeting report, UNAIDS Reference Group on Estimates, Modeling and Projections, Geneva, Switzerland, July 25–26, 2013), http://www.epidem.org/sites/default/files/content/resources/attachments/Final%20Report.pdf (accessed January 27, 2017). Similar concerns have been raised by Joe Amon, ‘Human Rights in Relation to Geographic “Hotspots” and Key Populations’, (presentation at UNAIDS Reference Group on Estimates, Modeling and Projections, Geneva, Switzerland, 25–26 July 2013).
44 Global Network of Sex Work Projects (NSWP), Community Guide: Mapping and Population Size Estimates of Sex Workers (NSWP: Edinburgh 2015), 2.
45 NSWP, Policy Brief: Mapping and Population Size Estimates of Sex Workers: Proceed With Extreme Caution (Edinburgh, Scotland, 2015).
46 James C. Scott, Seeing Like A State: How Certain Schemes to Improve the Human Condition Have Failed (New Haven CT: Yale University Press, 1999).
47 Eduard J. Beck, Wayne Gill and Paul R. DeLay, ‘Protecting the Confidentiality and Security of Personal Health Information in Low- and Middle-Income Countries in the Era of SDGs and Big Data’, Global Health Action 9, no. 1 32089 (2016), doi:10.3402/gha.v9.32089.
48 Kevin E. Davis and Michael B. Kruse, ‘Taking the Measure of Law: The Case of the Doing Business Project’, Law and Social Inquiry 32, no. 4 (2007), 1095–119; Kevin E. Davis, Benedict Kingsbury and Sally Engle Merry, ‘Indicators as Tools of Global Governance’, Law and Society Review 46, no. 1 (2012), 71–104; Margaret L. Satterthwaite and AnnJannette Rosga, ‘The Trust in Indicators: Measuring Human Rights’ (IILJ Working Paper, 2008); Sally Engle Merry, Kevin E. Davis and Benedict Kingsbury, eds, The Quiet Power Of Indicators: Measuring Governance, Corruption, and Rule of Law (Cambridge: Cambridge University Press, 2015); Sally Engle Merry, ‘Measuring the World: Indicators, Human Rights and Global Governance’, Current Anthropology 52, no. 3 (2011), 583–95; Sally Engle Merry and Summer Wood, ‘Quantification and the Paradox of Measurement: Translating Children’s Rights in Tanzania’, Current Anthropology 56, no. 2 (2015), 205–29; Inga T. Winkler, Margaret L. Satterthwaite and Catarina de Albuquerque, ‘Measuring What We Treasure and Treasuring What We Measure: Post-2015 Monitoring for the Promotion of Equality in the Water, Sanitation, and Hygiene Sector’ (New York University School of Law, Public Law and Legal Theory Research Paper Series, 2014).
49 Sara L. M. Davis, ‘Measuring the Impact of Human Rights on Health in Global Health Financing’, Health and Human Rights 17, no. 2 (2015), 97–110.
50 Merry, Davis, and Kingsbury, The Quiet Power of Indicators, 2.
51 Davis, Kingsbury and Merry, ‘Indicators as Tools’.
52 Satterthwaite and Rosga, ‘Trust in Indicators’; Davis and Kruse, ‘Taking the Measure of Law’.
53 Winkler, Satterthwaite and de Albuquerque, ‘Measuring What We Treasure’.
54 Davis, Kingsbury and Merry, The Quiet Power of Indicators.
55 Christopher G. Bradley, ‘International Organizations and the Production of Indicators’, in The Quiet Power of Indicators, ed. Merry, Davis and Kingsbury, 27–74.
56 Sidsel Roalkvam and Dennis McNeill, ‘What Counts as Progress? The Contradictions of Global Health Initiatives’, Forum for Development Studies 43, no. 1 (2016), 69–88; Vincanne Adams, Sienna R. Craig and Arlene Samen, ‘Alternative Accounting in Maternal and Infant Health’, Global Public Health 11, no. 3 (2016), 276–94; Vincanne Adams, Nancy J. Burke and Ian Whitmarsh, ‘Slow Research: Thoughts For a Movement in Global Health’, Medical Anthropology 33, no. 3 (2014), 179–97; Vincanne Adams, ed., Metrics: What Counts in Global Health (Durham & London: Duke University Press, 2016); Vincanne Adams, ‘Metrics of the Global Sovereign: Numbers and Stories in Global Health’, in Metrics, ed. Adams, 19–56; Sofia Gruskin and Laura Ferguson, ‘Using Indicators to Determine the Contribution of Human Rights to Public Health Efforts’, Bulletin of the World Health Organisation 87 (2009), 714–19.
57 Adams, Craig and Samen, ‘Alternative Accounting’, 285.
58 Claire L. Wendland, ‘Estimating Death: A Close Reading of Maternal Mortality Metrics in Malawi’, in Metrics, ed. Adams, 57–81.
59 Satterthwaite and Rosga, ‘Trust in Indicators’.
60 Adams, ‘Slow Research’.
61 Sara L. M. Davis, ‘Human Rights and the Global Fund to Fight AIDS, TB and Malaria’, Health and Human Rights 1, no. 16 (2014), 134–47.
62 The Global Fund, ‘Applying for Funding: Country Coordinating Mechanism Eligibility Requirements’, http://www.theglobalfund.org/en/applying/country/requirements/ (accessed July 8, 2016); Davis, ‘Human Rights and the Global Fund’; Davis, ‘Measuring the Impact of Human Rights’.
63 USAID, ‘Linkages Project’, USAID website, https://www.usaid.gov/what-we-do/global-health/hiv-and-aids/partnerships-and-projects/linkages-project (accessed January 27, 2017).
64 PEPFAR, PEPFAR Country/Regional Operational Plan (COP/ROP) 2016 Guidance (December 2015), http://www.pepfar.gov/documents/organization/250377.pdf (accessed July 8, 2016); PEPFAR, ‘Key Populations Fact Sheet’ (September 16, 2016) http://www.pepfar.gov/press/262036.htm (accessed November 30, 2016).
65 Millennium Challenge Corporation, ‘MCC and PEPFAR to Invest in Data Collaboratives for Local Impact’, (August 31, 2015), https://www.mcc.gov/resources/doc/fact-sheet-mcc-and-pepfar-partner-to-invest-in-data-collaboratives-for-loca (accessed November 30, 2016).
66 Global Fund Office of the Inspector General, ‘Audit of the Global Fund’s Country Coordinating Mechanism’ (February 25, 2016), http://www.theglobalfund.org/en/oig/updates/2016-02-25_Audit_of_the_Global_Fund_s_Country_Coordinating_Mechanism/ (accessed November 28, 2016); AIDS and Rights Alliance for Southern Africa (ARASA), ‘Show Us The Money For Health’ ARASA, July 8, 2016, http://www.arasa.info/news/show-us-money-health-global-fund-networking-zone/ (accessed November 28, 2016); Esom et al., African Key Populations.
67 Jennifer Chan, Politics in the Corridor of Dying: AIDS Activists and Global Health Governance (Baltimore: Johns Hopkins University Press, 2015), 6–7.
68 UNAIDS, ‘The Greater Involvement of People Living with HIV (GIPA)’ (briefing note, March 2007), http://data.unaids.org/pub/BriefingNote/2007/jc1299_policy_brief_gipa.pdf (accessed February 27, 2017).
69 Esom et al., African Key Populations.
70 Esom et al., African Key Populations, 9.
71 UNAIDS, The Gap Report (Geneva: WHO, 2014).
72 UNAIDS, The Gap Report.
73 Ibid.
74 Ed Vulliamy, ‘How a Tiny West African Country Became the World’s First Narco State’, The Observer, March 9, 2008, https://www.theguardian.com/world/2008/mar/09/drugstrade (accessed November 30, 2016);AIDSInfo.
75 Esom et al., African Key Populations, 18.
76 Ibid.
77 Julius Otieno, ‘Kenya: HIV Patients to be Recorded Biometrically’, The Star, September 11, 2014, http://allafrica.com/stories/201409111326.html (accessed November 30, 2016); Maureen Murenga, ‘Fighting to Protect Human Rights in Kenya’s New Global Fund and PEPFAR Supported Key Population Size Estimate Study’, Health Gap, November 20, 2016, http://www.healthgap.org/fighting_to_protect_human_rights_in_kenya_s_new_global_fund_and_pepfar_supported_key_population_size_estimate_study (accessed November 30, 2016).
78 Murenga, ‘Fighting to Protect Human Rights’.
79 Ibid.
80 Paulo Longo, ‘From Subjects to Partners: Experience of a Project in Rio de Janeiro, Brazil’, Research for Sex Work 7 (2004), 9, http://www.nswp.org/sites/nswp.org/files/research-for-sex-work-7-english.pdf (accessed November 20, 2016).
81 A few examples include: NSWP, ‘Forced HIV and STI Testing of Sex Workers in Kyrgyzstan: A Violation of the Human Rights of Sex Workers’, NSWP website, February 18, 2014, http://www.nswp.org/es/news/forced-hiv-and-sti-testing-sex-workers-kyrgyzstan-violation-the-human-rights-sex-workers (accessed January 27, 2017); AFP, ‘Malawi Sex Workers to Get Damages Over Forced HIV Tests’, Daily Mail, May 21, 2015, http://www.dailymail.co.uk/wires/afp/article-3091088/Malawi-sex-workers-damages-forced-HIV-tests.html (accessed January 27, 2017); Chi Mgbeko, ‘Sex Workers in Greece Face Forced HIV Testing, While Those in Malawi Fight Back’, Huffington Post, August 11, 2012, http://www.huffingtonpost.com/chi-mgbako/greece-forced-hiv-testing_b_1585301.html (accessed January 27, 2017); Peter Moszynski, ‘Egyptian Doctors Who Took Part in Forced HIV Testing “Violated Medical Ethics”’, British Medical Journal 336 (April 19, 2008), 7649; Amy Green, ‘Women Shun Clinics over HIV Tests’, Bhekisisa, October 9, 2014, http://bhekisisa.org/article/2014-10-09-women-shun-clinics-over-forced-hiv-tests (accessed January 27, 2017).
82 NSWP, ‘Consensus Statement on Sex Work, Human Rights and the Law’, NSWP website, December 16, 2013, http://www.nswp.org/resource/nswp-consensus-statement-sex-work-human-rights-and-the-law (accessed November 30, 2016), 8.
83 NSWP, ‘Consensus Statement’; International Network of People who Use Drugs (INPUD), Consensus Statement on Drug Use Under Prohibition: Human Rights, Health and the Law’, INPUD website, October 2013, http://www.inpud.net/consensus_statement_2015.pdf (accessed November 30, 2016), 27.
84 NSWP, Mapping and Population Size Estimates of Sex Workers, 7.
85 NSWP, Mapping and Population Size Estimates of Sex Workers, 14.
86 A. L. Wirtz, G. Trapence, V. B. Gama et al., HIV Prevalence and Socio-Behavioral Characteristics Among Men Who Have Sex With Men across Seven Sites in Malawi, Final report to the UN Joint Team on HIV and AIDS in Malawi (Lilongwe: Johns Hopkins University and the Center for the Development of People, 2014).
87 John Waters, personal communication with the author, August 4, 2016.
88 United Nations Population Fund (UNFPA), Global Forum on MSM & HIV, United Nations Development Programme (UNDP), World Health Organisation (WHO), United States Agency for International Development (USAID), and World Bank, Implementing Comprehensive HIV and STI Programmes with Men Who Have Sex With Men: Practical Guidance for Collaborative Interventions (New York: UNFPA, 2015). http://msmgf.org/current-projects/msmit/ (accessed November 30, 2017), 213.
89 NSWP, Consensus Statement, 17; Melissa Hope Ditmore, Antonia Levy and Alys Willman, eds, Sex Work Matters: Exploring Money, Power and Intimacy in the Sex Work Industry (London: Zed Books, 2010).
90 Ivan Wolffers, ‘Editorial’, Research for Sex Work 7 (2004): 1,: http://www.nswp.org/sites/nswp.org/files/research-for-sex-work-7-english.pdf (accessed November 30, 2016).
91 Longo, ‘From Subjects to Partners’, 9.
92 Sonke Gender Justice, ‘Sex Workers and Sex Work in South Africa: A Guide for Journalists and Writers’, (Sonke Gender Justice, Sisonke Sex Worker Movement, Sex Worker Education and Advocacy Taskforce, and Women’s Legal Centre, December 2014), http://www.nswp.org/sites/nswp.org/files/Sex%20Work%20and%20Sex%20Workers%20in%20South%20Africa_Final%20Journalist%20Guide_15%20Jan%202015.pdf (accessed November 30, 2016); Stella, ‘Participatory Research in Stella: Guidelines’, NSWP website, May 28, 2003, http://www.nswp.org/sites/nswp.org/files/Participatory%20research%20in%20Stella.EN_.pdf (accessed November 30, 2016); WONETHA, ‘Organizational Policy for Visiting Researchers and Professionals’, NSWP website, July 23, 2014, http://www.nswp.org/resource/organisational-policy-visiting-researchers-and-professionals (accessed November 30, 2016).
93 Adams, Burke and Whitmarsh, ‘Slow Research’.
94 Ferdinand de Saussure, Course in General Linguistics, trans. Wade Baskin, ed. Perry Meisel and Haun Saussy (New York: Columbia University Press, 2011); Jacques Lacan, Écrits: The First Complete Edition in English, trans. Bruce Fink (New York: Norton Books, 2007); Jacques Derrida, Of Grammatology, trans. Gayatri Spivak (Baltimore: Johns Hopkins University Press, 1997[1967]); Michel Foucault, Discipline and Punish: The Birth of the Prison (New York: Vintage, 1977).