Reducing HIV Stigma and Discrimination: lessons for leprosy

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Reducing HIV Stigma and Discriminationlessons
for leprosy

• Open-ended Consultation Elimination of
  discrimination against persons affected by
  leprosy and their family members
• Geneva, 15 January 2009Palais des Nations (Room
  XXIV)
• Susan Timberlake, Senior Human Rights and Law
  AdviserUNAIDS Geneva

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Lessons from the HIV response

• Standard-setting on stigma and discrimination
• International
• National
• Framework of accountability
• Govt commitments
• Monitoring
• Programmatic responses
• Measuring
• Reducing
• Evaluating

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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.

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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

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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

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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

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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?

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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?

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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

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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)

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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

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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 enactmentproduct 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

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Four principles for taking action

1. Address the causes of stigma and discrimination
   and the key concerns of affected populations
2. Measure stigma as part of knowing your epidemic
   and response and implement / scale-up effective
   programmes
3. Use a multifaceted approach to reduce stigma and
   discrimination, and
4. Evaluate stigma and discrimination-reduction
   efforts

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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
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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

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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

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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 dont
  work, not enough programmes, programmes not being
  evaluated, belief that programmes dont work
• Operational research is needed and should be
  integrated into project/programme plans at the
  outset

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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

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