1. 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

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

3. Standard-setting at international level – discrimination and health status
1988 – World Health Assembly resolution “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
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”.

4. 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

5. 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

6. 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

7. 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?

8. # 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?

9. 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

10. 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)

11. 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

12. 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

13. 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

14. 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

15. 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

16. 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

17. 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

18. 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