HIV-Related Stigma and Discrimination - The Epidemic Continues

HIV/AIDS RELATED

STIGMA AND DISCRIMINATION

A REVIEW AND SUGGESTED WAYS FORWARD FOR SOUTH ASIA

October 2002

Preparation of this document:

This document was initially prepared as a background document to help provide a framework for discussion at the UNAIDS 4^th South Asia Partnership Meeting in Kathmandu, October 2002. Information was collated from existing literature, implementing agencies and UN cosponsors. Proposed models of moving strategies that tackle HIV / AIDS related stigma and discrimination forward were discussed.

Following the workshop various suggestions were incorporated, through a consensual process. The document is designed to help policy makers and programme designers in the South Asia Region identify possible ways of tackling stigma and discrimination either in existing programmes or new programmes.

UNAIDS officer responsible for preparing the document: Craig Burgess, Technical Officer, South Asia Inter Country Team, New Delhi, India

Acknowledgements

UNAIDS country offices (Bangladesh, India, Nepal, Pakistan and Sri Lanka)

Regional UN co-sponsors

Representatives from the donor community.

Family Health International (FHI)

CARE Bangladesh

Health Development Networks (HDN)

All rights reserved. This document, which is not a formal publication of UNAIDS, may be freely reviewed, quoted, reproduced or translated, in part or in full, provided the source is acknowledged. The document may not be sold or used in conjunction with the commercial purposes without prior written approval from UNAIDS (contact UNAIDS Information Centre).

The views expressed in documents by named authors are solely the responsibility of those authors.

The designations employed and the presentation of the material in this work do not imply the expression of any opinion whatsoever on the part of UNAIDS concerning the legal status of any country, territory, city or area or of its authorities, or concerning the delimitation of its frontiers and boundaries.

The mention of specific companies or of certain manufacturers products does not imply that they are endorsed or recommended by UNAIDS in preference to others of a similar nature that are not mentioned. Errors and omissions excepted, the names of proprietary products are distinguished by initial capital letters

1987 Jonathan Mann[1]

There are three phases to the AIDS epidemic in any society:

The first is the epidemic of HIV infection (entering the community silently and unnoticed).

Second is the epidemic of AIDS, which appears when HIV triggers life threatening infection.

Thirdly is the epidemic of stigma, discrimination, blame and collective denial, which makes it so difficult to effectively tackle the first two.

2001 United Nations Declaration of commitment on HIV / AIDS

‘Stigma, silence, discrimination and denial, as well as lack of confidentiality, undermine prevention, care and treatment efforts and increase the impact of the epidemic on individuals, families, communities and nations’ (paragraph 13).

‘By the year 2003, nations should ensure the development and implementation of multi-sector national strategies and financing plans for combating HIV / AIDS that address the epidemic in forthright terms; confront stigma, silence and denial; address gender and age based dimensions of the epidemic; and eliminate discrimination and marginalisation’ (paragraph 37).

‘By the year 2003, nations should enact, strengthen or enforce, as appropriate, legislation, regulations and other measures to eliminate all forms of discrimination against and to ensure the full employment of all human rights and fundamental freedoms by people living with HIV / AIDS and the members of vulnerable groups, in particular to ensure their access to, inter alia, education, inheritance, employment, healthcare, social and health services, prevention, support and treatment, information and legal protection, while respecting their privacy and confidentiality; and develop strategies to combat stigma and social exclusion connected with the epidemic’ (paragraph 58).

HIV / AIDS - related stigma and discrimination (S&D) not only make life unbearable for the estimated 4.2 million people living with the virus in South Asia. S&D are regarded by many as the greatest barriers preventing further HIV infections, providing adequate care, support and treatment. S&D issues are now illuminated by a profile raising spot light in the form of the UNAIDS World AIDS Campaign. This will help focus ways forward to find effective methods of translating S&D theories into practical, country wide, measurable, impact based policies and programmes

This paper reviews the links between causes and effects of S&D, provides a contextual framework for S&D issues with suggested strategies and actual regional initiatives (annex 1), identifies gaps in these responses and suggests potential models for intervention. It distills information and opinions from available literature and regional UN, donor and NGO contacts. The recommendations and annex 1 suggest practical strategies for programmes committed to reducing S&D in South Asia.

Stigma is a dynamic process of devaluation, whose qualities are quite arbitrary, arising from the perception that there has been a violation of a shared set of shared attitudes, beliefs or values. It is linked to power and domination throughout societies, creating and reinforcing inequality where some groups are made to feel superior and others devalued (especially where gender, sexuality or race are concerned). This process can therefore lead to prejudicial thoughts, behaviours and actions by individuals, governments, communities, health care providers, friends or families. Stigma is socially constructed and therefore needs societal based interventions to combat it, aimed at changing attitudes and behaviours.

Discrimination is an action that occurs when a distinction is made against a person. This results in his or her being treated unfairly and unjustly, on the basis of their belonging to a particular group. Combating discrimination requires providing a supportive legal environment. The causes of denial are rooted in psychological factors and although intricately linked with the effects of S&D, denial is not analysed here.

Freedom from discrimination is a fundamental right founded on the principles of natural justice. Human rights derive from the individual’s relationship with the State and States have an obligation to respect, protect and fulfil human rights. For the last 50 years human rights have been globally recognised and codified through the UN human rights instruments. The non discrimination clauses that exist in several of these instruments[2] has been amended by the UN Human Rights Commission to include HIV / AIDS as a status that does not allow discrimination. The international human rights mechanisms that exist to monitor countries application of the conventions do exist and could be included in comprehensive strategies in South Asia.

Most interventions tackling S&D have their roots in applying human rights standards, but sometimes lack measurable action based and practical outputs that can be integrated into programmes. This may actually decrease the impact of wider multi-sector initiatives, inherent in more societal methodologies.

By analysing the relationship between the causes and effects of S&D, issues are dissected into manageable parts, clarifying potential solutions. It is clear that the causes of S&D are layered upon pre-existing societal stigma towards marginalised groups, are strongly related to knowledge of HIV transmission, have many cultural determinants (including wide societal acceptance of the inequities which perpetuate HIV-specific S&D) and are affected by the legal environment and are fuelled by misinformed beliefs and irresponsible inaccurate media reporting.

These all worsen fear, guilt and shame leading to worsening discriminatory behaviours resulting in human rights violations and increasing the problem of denial.

The effects may be summarised as causing isolation and depression, undermining preventive efforts, reducing access to adequate care, VCT and support along with causing inaccurate surveillance and decreasing the ability to plan responses effectively. Annex 1 gives a contextual framework showing more detailed effects of S&D, proposed strategies and examples of initiatives from the South Asia Region. The effects include:

1. Legislative / Governmental: restrictions on entry and residence on the basis of HIV status, penal codes on homosexuality, restrictions on rights to anonymity and marriage.

2. Marginalised groups: commercial sex workers (CSWs), men who have sex with men (MSM), transgender individuals, prisoners and migrant workers are all stigmatised by society already, making it even harder for them to gain access for support.

3. People living with HIV / AIDS: low visibility of PLHA fuels fear and ignorance and S&D make it difficult for PLHA to form support groups.

4. Individual, immediate family and community: depression, punishment, physical harm and rejection by communities and families (especially affecting women).

5. Health services: attitudes of Health Care Workers (HCWs) affect care seeking patterns of PLHA, confidentiality breaches, refusal or delay for support and care, testing without consent.

6. Women: women living with HIV / AIDS are denied treatment and shelter, rejected by families, more frequently than men living with HIV / AIDS.

7. Youth and education institutions: children living with HIV / AIDS experience bullying and may be segregated from activities.

8. Work place: dismissal and recruitment on the basis of HIV status, denial of pension schemes or medical benefits on basis of HIV status.

9. Media services: may reinforce stereotypes and images of fear, guilt and immorality.

10. Religious institutions: exclusion from services and segregation on basis of HIV status.

The South Asia region is one of the most populous and has one of the greatest diversity of religions and cultures, which make it challenging to combat S&D. HIV prevalence rates may be lower than other regions, but South Asia’s background of extreme vulnerability of women, epidemic spread from urban to rural areas, large numbers of men frequenting sex workers, low condom use and access, increased cross border mobility, human trafficking and injecting drug use are all great cause for concern.

India has localised epidemics within high risk groups spreading to the general population. Nepal has a concentrated epidemic with significant high HIV rates amongst risk groups. Although HIV rates are relatively low in Bangladesh, Pakistan and Sri Lanka, high risk behaviours are prevalent with highly vulnerable populations. It is thought that S&D are extremely prevalent in the region. This has often been blamed on existing attitudes to marginalised groups and infectious diseases as well as the relatively low profile of PLHA. One ongoing study is analysing patterns of S&D in 6 Asian countries[3], however there is little published information that quantifies or analyses S&D in the South Asian context.

The regional contextual diversity makes broad policy making with general initiatives difficult and has often been blamed for inaction specifically addressing the issue of S&D. However, S&D are providing an explosive fuel for the regional epidemic and we cannot ignore the urgency to scale up existing strategies and devise new ones to tackle S&D. These may be taken from existing programmes in the South Asia Region or from initiatives from other regions that show sound principles.

1. Changing legal environment to prevent discrimination and ensuring enforcement.

2. Supporting marginalised groups and PLHA.

3. Changing attitudes towards PLHA and their families.

4. Encouraging supportive behaviour changes to compassion and constructive tolerance.

5. Increasing openness, breaking the silence and breaking down the fears and misconceptions that reinforce high risk behaviours.

It becomes clear using the contextual framework in annex 1 that interventions tackling S&D require multi-sector thinking and should be aimed at individual, community and governmental levels. Reviewing the literature, strategies from other regions and examples of initiatives in South Asia reveals some common attributes.

1. Analysis of causes and effects of S&D.

2. Communication and education aimed at changing attitudes and behaviour, not just imparting knowledge.

3. Establishing a more equitable policy context.

4. Legal challenges are encouraged to the highest levels.

5. Dignity and rights of individuals and marginalised groups are safeguarded.

6. Addressed from a human rights framework.

7. Communities empowered through a participatory and lobbying process.

8. Social marketing and social mobilisation.

9. Leaders (governmental, religious and community) have been sensitized and involved to create a more open society.

10. Marginalised groups and PLHA networks are involved with forming policy, designing and implementing programmes and allowed to build ‘new identities’ within society.

11. Identifies both prevention and care / support aspects.

S&D are social processes used to create and maintain social control and produce, legitimise and perpetuate social inequality. They must therefore be resisted and challenged by addressing social and community changes through community mobilisation and social transformation. To be more effective, future initiatives will have to involve all actors tackling social, cultural, political and economic factors.

The contextual framework in Annex 1 helps classify various strategies but does not prioritise them. To be effective, all initiatives need to prioritise:

a) enabling a legal environment to allow justice and the judiciary mechanisms for tackling discrimination.

b) involving marginalised groups and PLHA in policy making, design and implementation of initiatives.

These two elements require individual strategies (suggested in annex 1), implemented by agencies with added advantages in the sectors. Initiatives addressing S&D in health services or any of the societal contexts (shown in the diagram below) should look at ways in which aspects of a) and b) can be incorporated into programmes.

Although agencies have different mandates and strengths, creating supportive legal frameworks and greater involvement of marginalized groups and PLHA provide common elements for response. The ‘cross cutting’ nature of these two prioritised elements may act as the catalyst for more multi sector, inter agency approaches through greater collaboration, information sharing and resource pooling.

Two ways of analysing initiatives tackling S&D within the health services and the various societal contexts include:

1. Identifying the causes and effects of stigma and discrimination in each context and exploring the linkages between them.

2. Analysing prevention and care & support initiatives and using this classification to look at ways of tackling S&D.

Many general HIV / AIDS control programmes do produce ‘by-products’ that help tackle S&D. However, if S&D are not specifically targeted as programme goals, then gaps in responses become apparent. Several common gaps in responses to S&D were identified during the literature and programme reviews:

a) Stigma results in denial, leading to inaccurate disease surveillance, severely restricting ability to assess and plan health needs appropriately.

· Although many initiatives take place in the health care setting, this sector remains one of the most frequently cited context for experiencing stigma by PLHA.

· Most initiatives are focused on an individual sector, with little cross cutting between the sectors. Reasons include NGOs not having the mandate or capacity to implement multi-sector programmes and poor inter-sector co-ordination and information sharing at country and regional levels on S&D issues.

· There does not appear to be effective country or region wide co-ordination systems for donors, civil society, UN and Governments to share information and co-ordinate initiatives on S&D.

· Few documented S&D reduction initiatives specifically focus on women, children and schools.

· Addressing accountability and behaviour changes for men from socially dominant groups who are adulterous, use commercial sex workers or have sex with men.

· Many Health Care Worker (HCW) training curriculae do not contain any social or legal dimensions, which are so important in understanding S&D.

· Initiatives often focus on imparting knowledge, without monitoring attitude or behaviour changes.

· In comparison to preventive programmes tackling S&D, care and support initiatives seem easier to implement and access resources for. Many NGOs find it more difficult to access funding for preventive S&D projects because outputs are regarded by donors as ‘softer’.

· There is little evidence of an effective ethical review process for S&D initiatives.

Measurement of S&D and impact indicators may be complex and therefore difficult, but its importance cannot be over emphasized for some form of quality control:

5. To compare geographic areas and by activity (if measurement is standard) to identify more effective initiatives

Many organisations perceive monitoring and evaluating S&D programme impact, requiring the measurement of indicators, as stifling. Many experimental, creative ideas never develop into innovative projects for this reason. Indicator measurement is not only linked to programme monitoring, but also linked to accountability to donors.

This issue creates an unfortunate atmosphere where there is a disincentive to start programmes tackling S&D, as it relates to accountability and regularity of funding. Despite the dilemmas faced by many implementing agencies, there are several tools available for measurement.

1. Survey tools used in various surveys are detailed in annex 2

2. Hostility index developed in study ‘India HIV and AIDS-related Discrimination, Stigmatisation and Denial’. UNAIDS Best practice collection. www.unaids.org

3. Two stigma scales measure the concept of tolerance towards a PLHA

4. Survey tools in annexes 1, 3 and 5 of ‘Protocol for the identification of discrimination against people living with HIV’. UNAIDS Best practice collection.

‘Measurement of S&D and programme impact’ was cited as a very common reason for agencies not making advocacy or S&D reduction part of a project goal. These projects often take a long time to prove effectiveness and are based on changing long standing attitudes and behaviours.

Due to the regional contextual differences, it may be easier to develop standard ‘dimensions’ or aspects of stigma, rather than actually standardising all indicators.

Although documented proven regional efforts to challenge S&D are rare, many general HIV reduction programmes do reduce S&D as a by-product. However, there are few initiatives in the region that purely focus on reducing S&D. This creates many gaps and these highlighted areas need urgently addressed.

Excuses given for delaying new programmes or scaling up existing initiatives tackling S&D include the complexity of the issue and the need for more research. Scaling up activities will require further financial inputs, overall co-ordination, more inter agency collaboration and information sharing. Strong leadership and political commitment are necessary to overcome this inertia quickly, as the window of opportunity is rapidly closing for South Asia.

Devising new programmes and initiatives, based on the contextual framework will require an environment of creativity and imagination. Any new or expanded strategies will have to consider the legal framework with advocacy as well as involving marginalised groups and PLHA at all stages of the initiative. The existing S&D interventions are predominantly implemented by NGOs and encouragement must be given to increase the significance of scale, with more UN and governmental support.

1. S&D initiatives or ‘strategically planned’ activities with significant anti S&D by-products must be central to all HIV prevention, care and support programmes.

2. Multi-sector, comprehensive programmatic and societal approaches must be adopted.

3. Measurement of indicators and impact are available, but require standardisation.

5. Donors need to be willing to allow agencies to experiment with imaginative and innovative initiatives that may be slow to show empirical signs of improvement.

6. Regional co-ordination mechanisms need strengthening to allow greater exchange of information between countries and sectors involved with S&D programmes.

7. Participation of marginalized groups and PLHA must continue to be a priority.

8. Improve regional information flow by establishing a regional task force and creating a structured Stigma – AIDS e–space forum, as also used for UNAIDS Inter country Team for East and Central Africa along with Health and Development Networks (HDN).

9. Women and children remain the most vulnerable to the effects of S&D and programmes should prioritise analysing and addressing their needs.

10. Political and social leaders need to be more involved with strategies and programmes tackling HIV / AIDS that go beyond the purely legislative and governance domains.

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[1] The late director of the Global Programme on AIDS

[2] including the Convention on the Elimination of all forms of Discrimination Against Women, the Convention on the Rights of the Child and the Covenant on Economic, Social and Cultural Rights

[3] Deakin University, funded by Ford foundation and using UNAIDS protocol