Reducing HIV Stigma and Discrimination: lessons for leprosy Open-ended Consultation: Elimination of discrimination against persons affected by leprosy and their family members Geneva, 15 January 2009 Palais des Nations (Room XXIV) Susan Timberlake, Senior Human Rights and Law Adviser UNAIDS Geneva

Lessons from the HIV response Standard-setting on stigma and discrimination International National Framework of accountability Govt commitments Monitoring Programmatic responses Measuring Reducing Evaluating

Standard-setting at international level – discrimination and health status 1988 – World Health Assembly resolution 41.24 “Avoidance for Discrimination in relation to HIV infected people and people with AIDS” - underlined that human rights vital for an effective response and urged States to avoid discrimination against people living with HIV 1995 - Commission on Human Rights confirmed that “other status” in the prohibited grounds for discrimination is to be interpreted to “include, health status, including HIV/AIDS”.

Standard-setting and national commitments Declaration of Commitment on HIV/AIDS (2001): governments confirm that discrimination continues to be major problem that must be overcome through legal, programmatic and empowerment efforts Political Declaration on HIV/AIDS (2006) and process leading to it commit States to achieving universal access to HIV prevention, treatment, care and support and confirm that stigma, discrimination, gender inequality and human rights violations are still critical issues blocking effective responses to the epidemic, and to scaling up to universal access

Standard-setting at international levels – engagement and participation of those affected 1995 Paris AIDS Declaration confirms the principle of the Greater Involvement of People Living with HIV Reiterated throughout the work of UNAIDS and also in its governing Board, the Programme Coordinating Board that has civil society representatives

Standard-setting at national level – legislation and litigation for protection against discrimination, etc. From 1994 until present, many cases brought in national courts which challenge and win on HIV-related discrimination, relating to discrimination in employment, in armed services, in education, in housing, in health insurance Also in other areas, e.g. right to treatment, right to association, intellectual property rights Lead to legislative reform, jurisprudence

Framework of accountability Declaration of Commitment on HIV/AIDS (2001) Political Declaration on HIV/AIDS (2006) National target-setting to achieve universal access All contain commitments on discrimination, not good indicators, but have biennial reporting (involving NGOs) Does strategy address S and D as cross-cutting issue? Do you have laws to protect against discrimination? Are there programmes designed to change societal attitudes of stigmatization associated with HIV and AIDS to understanding and acceptance?

# 15. Are there programmes designed to change societal attitudes of stigmatization associated with HIV and AIDS to understanding and acceptance? Out of 192 countries, of the 136 that responded in 2007: 123 countries claimed to have such programmes (90%) 9 claimed they did not 4 did not answer From UNGASS reports (2008) about programmes in NSPs GOOD NEWS BUT WHAT DOES IT MEAN?

Addressing stigma and discrimination programmatically Demystifying their elements through operational research: Findings: Can be measured Are globally pervasive Are similar across contexts Affect health outcomes Operate at multiple levels – individual, families, communities, institutions, media Have actionable causes and can be reduced Can evaluate programme outcomes

Linking stigma and discrimination to other programme and health outcomes E.g. stigma and discrimination negatively affects uptake of HIV prevention/treatment Botswana: 40 per cent of people on treatment reported that they delayed getting tested, mostly due to stigma Tanzania: only half of respondents reported that they had disclosed HIV status to intimate partners; for those who disclosed, significant delay reported due to stigma (2.5 years for men; 4 years for women)

Measuring stigma and discrimination APN+ “AIDS Discrimination in Asia” (2004): Indonesia data 29% reported experiencing breach of confidentiality in health sector; 14% refused treatment due to HIV-status women twice as likely as men to experience discrimination by healthcare workers 60% of women advised not to have a child since HIV-positive diagnosis 21% reported being deserted by a partner due to HIV-status 15% reported AIDS-related workplace discrimination

Measuring through a Stigma Index for and by people living with HIV Quantitative questionnaire and in-depth case study research Measure: Stigma in different settings e.g. workplace, home, community, church, self Experiences of different communities most vulnerable to infection (MSM; IDU; Sex workers; migrants, women and young girls) Change over time Process as important as the results Tool for GIPA enactment—product of a partnership between IPPF, UNAIDS, GNP+ and ICW Regional workshops: 5 of 7 done so far; 87 people; 66 organisations; 50 countries Countries undertaking in 2008: Dominican Republic, Thailand, Bangladesh, Zambia, Nigeria, Kenya

Four principles for taking action Address the causes of stigma and discrimination and the key concerns of affected populations Measure stigma as part of “knowing your epidemic and response” and implement / scale-up effective programmes Use a multifaceted approach to reduce stigma and discrimination, and Evaluate stigma and discrimination-reduction efforts

Address actionable causes Lack of awareness and knowledge of stigma and discrimination and their harmful effects Create awareness of what stigma and discrimination are using a combination of: Participatory education “Contact strategies”, which involve direct or indirect interaction between people living with HIV and key audiences Mass media campaigns Fear of acquiring HIV through everyday contact with infected people because of lack of detailed knowledge and Information Address fears and misconceptions about HIV transmission by providing detailed information about how HIV is and is not transmitted Linking people with HIV with behaviour that is considered improper and immoral. Discuss the ‘taboos’ – including gender inequalities, violence, sexuality Mobilise action to challenge stigma and discrimination at the national and community levels

Use combination of approaches Empowerment of people living with HIV Updated education about HIV Activities that foster direct/indirect interaction between people living with HIV and key audiences Participatory approaches that encourage dialogue and interaction Combining social mobilisation and legal activism turn “victims” of stigma and discrimination into empowered people leading social change

Use various programmes to empower Know your rights/laws campaigns (“legal literacy”) Human rights education for key service providers (health care workers, police, judges): nondiscrimination, confidentiality, informed consent, ethical partner notification Programmes to change harmful gender norms, violence against women Provision of legal aid, community paralegals, working with traditional leaders

Monitor and evaluate programmes to be able to “sell them” Assessment of progress in stigma reduction has often been neglected Vicious circle: belief that programmes don’t work, not enough programmes, programmes not being evaluated, belief that programmes don’t work Operational research is needed and should be integrated into project/programme plans at the outset

Conclusions and next steps S and D still prevalent and are key barriers to universal access to HIV prevention, treatment, care and support Have standards, framework of accountability, programmatic approaches and measures for outcomes Have many countries claiming that they are implementing such programmes BUT Still do not know content, scale and quality or effectiveness Need to be able to provide technical assistance to and political pressure on funders and country level partners to support them to put these into proposals for funding and take them to scale