Make or Break Human Rights, Accountability & the State of the HIV Response

2. Make or Break Human Rights, Accountability & the State of the HIV Response Paula Akugizibwe, Michaela Clayton, Allan Maleche, Anand Grover

3. “By working together, we have the power to reverse the tide of this epidemic. Science will one day triumph over AIDS, just as it did over smallpox. Curbing the spread of HIV will be the first step. Until then, reason, solidarity, political will and courage must be our partners.” - Durban Declaration, 2000

4. 10 years later • 25,000 participants from over 100 countries at AIDS2010 • At conservative estimate of US$2,000 per attendant: = 20% of Round 9 GF allocation for Southern African region • “AIDS 2010 is also of great importance to Vienna as a conference centre…current prognosis is for the conference to contribute a total of 45 million euro to Austria’s gross domestic product.” http://www.wieninternational.at/en/node/17248 • What is the moral of the story?

5. Common Ground • Shared vision – MDG 6: • To curb the spread of HIV/TB • ‘Universal Access’ “The world possesses the resources and knowledge to ensure that even the poorest countries, and others held back by disease, geographic isolation or civil strife, can be empowered to achieve the MDGs.” – Ban Ki Moon, MDG Report 2010 • Development & implementation of successful interventions: • Enabled at the collective level >> research, funding, accountability • Make or Break ultimately at individual level >> human rights

6. Human Rights vs Science: The false divide Science Messes Up Good Human Beings Human Beings Mess Up Good Science

7. 2010: A Critical Year ---- Make or Break? - Sylvia Tamale

8. Make or Break? • Outline: How have HR have shaped the state of the epidemic today? • Our ability to REACH and ENGAGE people where they are • Our ability to nurture a SUSTAINED sense of SHARED RESPONSIBILITY for the HIV response • ACCOUNTABILITY regarding funding and evidence-based approaches

9. The Right to Health • Absence of legally enforceable provisions at the national level undermines health systems • National recognition of right to health a predictor of sustainability in treatment programmes during economic crisis (World Bank & UNAIDS, 2009) • Lack of recognition of right to health allows for hierarchies of access, compounded by discrimination Source: George House Trust

10. Rights in Action: Access to Essential Medicines • TRIPS flexibilities : • Human Rights over Profit Rights • ARV prices decreased 100-fold • More recent national developments threaten to undo this: • Intellectual property agreements - EU Economic Partnership Agreements • Anti-counterfeit law in Kenya threatens access to generic medicines

11. Rights Inaction: Prisons • Lack of HIV & TB prevention , testing & treatment measures in prisons: e.g. condom provision • Violation of other basic rights creates conditions conducive to rapid spread of HIV and TB – e.g. overcrowding, lack of food • 27% of US inmates experience sexual violence (CDC, 2002) • Overlap with other challenges e.g. IDU K Todrys. Zambian Prison clinic PRISCA/ARASA/HRW “Unjust & Healthy” research report • HIV: “Insufficient knowledge…what we do know is alarming… up to 50 times general population rates.” (UNAIDS/UNODC, 2008) • TB incidence: 10 to 100 times general population. (WHO, 2009) • 30 million people worldwide go through the prison system every year • “Epidemiological pumps” / “Reservoirs”

12. Rights Inaction: Migrants • Message to the International AIDS Conference from Cindy Kelemi, BONELA, Botswana: • Isaac in long term relationship with Zimbabwean girlfriend, unable to access PMTCT because of citizenship: give birth to HIV+ baby boy Otsile in 2007 • Otsile does not inherit Motswana citizenship, unable to access ART • Falls sick in 2008: Isaac starts sharing ARVs • Otsile dies, Isaac develops drug-resistant HIV • “The last time we spoke to Isaac, he said, ‘I can’t believe my own government, that I voted into power discriminated my own flesh and blood, how much could it have cost to save my child’s life? What could have become of my child’s life?’ • As long as African governments fail to meet the Abuja declaration – committing 15% of national budgets to health – and as major donor agencies consider shifting focus from HIV/AIDS funding, many lives like this will continue to be lost unnecessarily. Non –governmental organizations such as BONELA will not be able to challenge such discriminatory policies and practices to ensure universal access to treatment, care and support services to all by 2015.”

13. Systematic Marginalisation Precludes Universal Access • Violation of rights entrenched in punitive/exclusionary law present as access barriers • Increasing recognition of the need for tailored interventions, - e.g. Global Fund R10 MARP reserve • Heightened risk & prevalence within these groups not inevitable >> result of hostile social, cultural & legal frameworks • Fundamental principle of human rights: equality • Equal protection of the right to health – regardless of subjective opinions on morality • Supported by public health rationale

14. Systematic Marginalisation Precludes Universal Access Source: UNICEF (2007)

15. Human Rights & Drug Use “The criminalisation of illicit drug users is fuelling the HIV epidemic and has resulted in overwhelmingly negative health and social consequences. A full policy reorientation is needed.” – The Vienna Declaration, 2010 • Eastern Europe & Central Asia: fastest growing HIV epidemic: 66% prev inc. from 2001 – 2008 • 57% of regional incidence in 2007 attributable to IDU • Russia: 90% of incidence attributable to IDU • IDUs least likely to access ART, though no evidence to support assumption of increased risk of resistance (Werd D et al, 2010) • Rights-based approach = Harm reduction. • Needle exchange AND opioidsubstitutuion • Scientifically sound but politically unpalatable • “…the availability and accessibilityof interventions depends on environmental and policy factors,and sufficient coverage is unlikely without policy, legal, orsocial change.” - Rhodes T et al, BMJ 2010;341:c3439 Effect of different coverage of opiate substitution treatment on HIV incidence and prevalence after five years assuming coverage of needle and syringe exchange programmes stays at 10%.

16. Human Rights & LGBTI • 86 countries in the world criminalise same-sex relationships (Senior K, 2010) • Problem not limited to law and policy: mass epidemic of homophobia driven by pseudo religious and cultural arguments • Implications: • Physical & mental health compromised by restricted ability to engage in healthy relationships • Experiences of homophobia related to multiple concurrent partnerships (Kyung & Hudes, 2006) • Homophobic sexual violence • Decreased access to HIV services • Consequences: • HIV prev among MSM up to 10 times higher in sub-Saharan Africa (Smith et al, 2009) • Very little known about transmission within other sexual minority groups

17. So many stories…. Alim Mongoche was a clothing designer and tailor. He was one of 11 men who were arrested under Article 347 of the Cameroonian penal code, which punishes consensual same-sex conduct. Alim spent more than one year in Kondengui Prisonin Yaoundé, Cameroon, where conditions are harsh and HIV-related medical treatment non-existent. Alim died from AIDS-related complications on June 29,2006, at age 30, ten days after his release from prison. Message to the International AIDS Conference from Zambian activist Chivuli Ukwimi (International Gay and Lesbian Human Rights Commission) “Homophobic stigma and denial have pushed the issue of same-sex HIV transmission in Africa firmly into the closet. The needs of African same-sex practicing people are off the map that government and civil society have drawn to guide national and regional HIV strategies. Political and cultural resistance to acknowledging African homosexualities and the resulting invisibilization of same-sex practicing people are contributing to widespread human rights abuses and increasing vulnerability to HIV/AIDS.”

18. Human Rights & Sex Work • Rights-based approach calls for recognition of agency over one’s body and choices (UNAIDS, 2009) • Criminalisation: • Renders vulnerable to violence, compromises ability to negotiate condom use, ostracises from access to health and justice • Sex workers HIV prev rates as high as 75% (Morrison et al, 2001) • SW/HIV receives less than 1% of global resources (UNAIDS, 2009) • DECRIMINALISATION demonstrates immense impact e.g. New Zealand: • Prostitution Reform Act 2003: All reasonable steps must be taken to ensure safer sex • Increases reporting of non condom use (R vs Morgan) & violence (Mossman & Mayhew, 2007) • Perception of right to refuse almost doubled in 4 years (Abel et al 2007 ) • Expands opportunities for other professions (Bennachie & Healy, 2010)

19. Human Rights & Gender • 61% of people living with HIV in sub-Saharan Africa are women • Broader context of structural inequalities • Sexual violence & bureaucratic PEP barriers • Economic dependency • Unequal access to education • “Gender equality and the empowerment of women are at the heart of the MDGs and are preconditions for overcoming poverty, hunger and disease. But progress has been sluggish on all fronts—from education to access to political decision-making.” • MDG report 2010 • www.whatworksforwomen.org

20. Human Rights & Gender • Discourse on gender creates cultural tensions – new style of engagement required • MDG ‘divisionism’ resulting in dangerous pretexts for diversion of funding from HIV treatment towards maternal and child health • Maternal mortality ratio could be significantly reduced by ensuring universal coverage of HIV services (Hogan et al, 2010; Hargrove, 2010) Men at ARASA workshop present their ‘likes & dislikes’ about women (2010)

21. Reproductive Rights • Reproductive rights were under threat in context of vertical transmission risk • Dilemma partially resolved by advent of PMTCT: but progress sluggish • Still 1,200 children born HIV+ daily • undercut by general challenges with maternal health and antenatal care • Social stigmatisation of pregnant women living with HIV – deterrent to access • Even in countries where there is considerable scale-up of PMTCT, we see extreme measures to curtail reproductive rights e.g. forced sterilisation in Namibia

22. Ending vertical transmission: do mandatory approaches have a place? “Attrition along each step of the cascade can be significant. For example, the acceptability of HIV testing strategies varies greatly in many high-HIV-prevalence settings, with significant proportions declining HIV testing or failing to return to collect test results.Even after a woman is diagnosed with HIV, there is no guarantee that she will agree to ARV drug prophylaxis. Studies in Burkina Faso, Côte d’Ivoire and Kenya have found that up to 40–60% of HIV-infected women decline short-course ZDV prophylaxis in pregnancy once diagnosed,although this experience is not universal.Reasons for non-acceptance of testing or interventions certainly vary among these settings, but may be tied to poor understanding, patient denial and fear of stigma.”- -Stringer E et al (2008)

23. “the epidemic of stigma, discrimination, and denial…[is] as central to the global AIDS challenge as the disease itself”. - Jonathan Mann, former WHO head of HIV, 1987

24. Intensifying attempts to “Control” HIV/TB • Increasing tendency towards coercive approaches to the management of HIV/TB, particularly with regards to testing and prevention of transmission • ARASA/HRW 2007 Research on “Know Your Status” universal testing campaign in Lesotho highlighted: • Inadequate training of HCW about the importance of consent • Inadequate linkages to care and treatment • Similar anecdotal reports from Swaziland and South Africa: • Deterrent to accessing health care services

25. Intensifying attempts to “Control” HIV/TB • Criminalisation: Ostensibly meant to encourage disclosure & protect women: often has opposite effect: • Reinforcing stigma; bypasses more critical and fundamental interventions • Women are particularly affected due to challenges with disclosure and negotiating safe sex • Condones hysterical prejudice – e.g. Texas: HIV+ man saliva classified as “deadly weapon” – sentenced to 35 years jail for spitting at police officer • “criminal law cannot draw reasonable, enforceable lines between criminal and non-criminal behavior, nor protect individuals or society from HIV transmission. In the protection of women, it is a poor substitute for policies that go to the roots of subordination and gender-based violence. The use of criminal law to address HIV is inappropriate except in rare cases. “ -Burris et al (2008)

26. Intensifying attempts to “Control” HIV/TB • “Although early in the history of DR-TB treatment, strict hospitalization of patients was considered necessary, community-based care provided by trained lay and community health workers (CHWs) can achieve comparable results and… decreased nosocomial spread of the disease.” – WHO, 2008 • - Existing programmes – e.g. Peru, Lesotho – attest to this (Mitnick, 2009; Satti, 2008) • Mandatory isolation still practiced in many countries around the world regardless of infrastructural capacity • Ukraine: all TB patients hospitalised: incidence and mortality increasing (Atun & Olynik, 2008) • More new DR TB cases through primary transmission than through previously treated cases (WHO, 2009)

27. Socio-Economic Rights are Crucial to Successful Scale-Up “Research found that although HIV-positive Tanzanians welcome anti-retroviral therapy, transportation, supplementary food costs, ill-treatment at hospitals and difficulties in sustaining long-term treatment all act as barriers to accessing treatment. Fear of stigma as well as HIV denial, which often led patients to seek treatment from alternative healers, and inadequate numbers of trained medical personnel, also prevented patients from accessing healthcare.” • Wringe A et al (2009) Rosen S, Fox MP, Gill CJ (2007) Patient retention in ART programs in sub-Saharan Africa: A systematic review.

28. Staggering & Costly Irrationalities in the Response to HIV & TB • Sluggisness in moving on evidence based approaches – e.g. Three I’s for TB/HIV - in stark contrast to “Brave New World” paradigm focusing on harder approaches, maximising biomedical tools • Maximising on biomedical potential is essential • But self-defeating without addressing fundamental shortcomings in our response: socio-economic challenges and lack of ACCOUNTABILITY • “TB is not a medical problem. It is a development issue. It is an economic problem. It's a human rights situation.” • Marcos Espinal, 2010

29. HIV Funding, Irrationalities & Rights • “[infectious diseases] constitute not only a major health crisis, but also …the greatest global threat to the survival and life expectancy of African peoples, [and] a devastating economic burden, through the loss of human capital, reduced productivity...” • -African Heads of State (Abuja Decl, 2001) • “Responding to immediate fiscal pressure by reducing spending on HIV treatment and prevention will reverse recent gains and require costly offsetting measures over the longer term…” • -World Bank (2009)

30. HIV Funding, Irrationalities & Rights • Global priorities crisis threatens fight against all MDGs • HIV is not over-funded: health is under-funded • HIV tx is our most valuable biomedical tool for prevention and stigma reduction • Within landscape of chronic neglect of health, rights-based advocacy drove massive global investment in HIV – now threatened • Failure to replenish the Global Fund with at least US$20 billion in October 2010 will send out precedent-setting message that health is optional, depending on the price tag • Recognition of health as a human right entails obligation to prioritise and sustain resource allocation for it • vs approaching health as a policy gift: allows for vulnerability to competing political interests

31. Competing political interests….

32. More money, as well as more transparency Message to the IAC from Maketekete Thotholo, Lesotho: “We see government, through parliament, writing off huge amounts of money that have been spent and unaccounted for. This is a gross violation of tax payers' rights to information… A lot of examples from the [Public Accounts 2006/7] audit report can be cited and yet government does nothing about such irregularities while people are dying due to lack of poor health services and shortage of essential drugs. About 60,000 PLWHIV are still awaiting to be enrolled in ART... Universal Access can be a reality only if our governments stop misusing our taxes and set priorities right. [Our rulers] must be forced to account for all the money entrusted to them! Universal access is only possible through accountability.”

33. Spot the Criminals

34. “What do you do With numbers so big That they stop being People And start being Data And we put them on paper And make life Or death With tired calculators…”

35. Conclusion • Science is the engine – human rights is the vehicle • Funding and accountability are critical for accelerated progress • Partnerships with civil society need to move from tokenism to mutual responsibility

36. Acknowledgements • Lynette Mabote • Cindy Kelemi • Chivuli Ukwimi • Maketekete Thotolo • Donela Besada • David Barr • Gregg Gonsalves • Matthew Kavanagh • Tengetile Hlophe • ARASA partners