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 HIVrelated 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
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
Address actionable causes
1.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
2.Fear of acquiring HIV
Address fears and misconceptions about HIV
through everyday contact with transmission by providing detailed information
infected people because of
about how HIV is and is not transmitted
lack of detailed knowledge
and Information
3.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