Current Gaps and Priorities in Advocacy to fight HIV Stigma Ron MacInnis International AIDS Society

Examining the Issue In order to identify the gaps in advocacy, let’s first take a look at what is being done today

ICRW/Change Project- Understanding and Challenging HIV Stigma: Toolkit for Action* Help trainers plan and organize educational sessions to raise awareness and promote practical actions to reduce HIV/AIDS stigma and discrimination What is Being Done? 1. Knowledge & Empowerment IPPF with UNAIDS,GNP+, and ICW- The People Living with HIV Stigma Index** Enhance global understanding of HIV stigma and build an evidence base to inform policy and practice Toolkit Index *International Center for Research on Women. (2008). How to Reduce the Stigma of AIDS. Retrieved November, 2008, from **The People Living with HIV Stigma Index. (nd). Retrieved November, 2008, from

AED-COACH- HIV/AIDS Anti-Stigma Initiative** A framework for addressing HIV/AIDS-related stigma, through models and community projects What is Being Done? 2. Development of Model Programs NGO Code of Good Practice Self-Assessment Checklist: Stigma and Discrimination* Putting into practice the key principles of the code for successful responses Checklist Framework *International Federation of Red Cross and Red Crescent Societies. (nd). Code of Good Practice for NGOs Responding to HIV/AIDS. Retrieved November, 2008, from **Academy for Educational Development Center on AIDS & Community Health. (2007). The Initiative. Retrieved November, 2008, from

What is Being Done? 3. Social and Attitudinal Change IAS and AIDES- ‘If I were HIV-positive’ campaign* Campaigns National Red Cross and Red Crescent Societies- ‘The truth about AIDS. Pass it on…’- The stamps campaign** *International AIDS Society. (nd). Campaign Against Stigma and Discrimination. Retrieved November, 2008, from ** International Federation of Red Cross and Red Crescent Societies. (nd). The Truth about AIDS. Pass it on... Retrieved November, 2008, from

What is Being Done? 4. Initiatives on Laws and Policies UNAIDS- Reducing HIV Stigma and Discrimination: a critical part of national AIDS programmes* Outlines strategies and programmes for overcoming stigma and discrimination Guidelines The World Bank- Legal Aspects of HIV/AIDS: A Guide for Policy and Law Reform** A guide to help governments identify and address any gaps or problematic aspects of their legislation and regulatory systems *UNAIDS. (2008). Publications. Retrieved November, 2008, from ** The World Bank Group. (2008). Publications. Retrieved November, 2008, from

Yet Stigma is Still a Problem…

Where Does Stigma Come From? What HIV Does Fear Shame Judgment Values Blame Gossiped about Avoided Isolated Individual Values Attitudes Beliefs Structural Culture Gender Laws/Policies Ideology Sexuality Socioeconomic Consequences of Stigma Self Isolation Disclosure Decline to use services Support/care denied Institutional discrimination Activities to Fight Stigma Toolkits Campaigns Indexes The RootsThe Symptoms

HIV stigma impacts human rights, HIV prevention, care and treatment Are the activities targeting HIV stigma addressing the roots or the symptoms? Are the activities targeting HIV stigma protecting vulnerable communities and people living with HIV from the impacts and consequences of stigma?

Stigma  Not a stand alone issue  Pre-dates HIV  HIV builds on pre-existing layers of stigma -  Homosexuality  Gender  Poverty  Chronic disease  Ethnic minority groups

Case 1: Travel Restrictions  74 countries deny the entry, stay or residence of HIV-positive people* Pre-existing stigma =  Chronic disease - Drain on the economy  Spread of disease  Ethnic and sexual minorities  Economic status/class *UNAIDS. (2008). HIV-related travel restrictions. Retrieved November, 2008, from

Case 2: Criminalization and Social Exclusion  86 UN member states still criminalize consensual same- sex sexual relations* Pre-existing laws = social exclusion  Homophobia  Injecting Drug Use  Sex work  Migrants *UNAIDS. (2008). International Day against homophobia. Retrieved November, 2008, from

Digging Deeper… Are the roots being addressed?

What is Being Done? What HIV Does Fear Shame Judgment Values Blame Gossiped about Avoided Isolated Violence Individual Values Attitudes Beliefs Structural Culture Denial of Rights Gender Laws/Policies Ideology Sexuality Socioeconomic Consequences of Stigma Self Isolation Social exclusion Denial of services Inequity Support/care denied Institutional discrimination Lack of allocation of resources or access to Services \ Response Activities to Fight Stigma Toolkits Campaigns Indexes Symptom- advocacy link

The Gap What HIV Does Fear Shame Judgment Values Blame Gossiped about Avoided Isolated Violence Individual Values Attitudes Beliefs Structural Culture Denial of Rights Gender Laws/Policies Ideology Sexuality Socioeconomic Consequences of Stigma Self Isolation Social exclusion Denial of services Inequity Support/care denied Institutional discrimination Lack of allocation of resources & access Services \ Response The Missing Link No Targets or Concept of Scale

Why is Stigma Still a Problem? *Understanding HIV Stigma & Discrimination, Laura Nyblade, ICRW Current advocacy does not adequately address or link to underlying stigma such as stigma associated with gender or consequences including violence

What Works in Other HIV Advocacy? Leadership & Voice of Affected National Programs & Targets Linkages to roots Adequate Funding Accountability Rights-based & Watch Dog Raise Awareness

Learning by Example What has worked in other HIV advocacy in the past three decades? Develop a clear advocacy statement based on an agreed statement: “Globally agreed Universal Access targets (by 2010) will not be achieved because of the pervasive, largely ignored, and growing stigma associated with HIV.”

Advocacy for the Future  Advocate for…  Removal of legal and institutional barriers to equal access and equal treatment e.g. gender-based violence, travel restrictions; resource allocn.  Decriminalization: homosexuality; HIV transmission; etc  Removal of legal and institutional barriers to evidence based HIV interventions e.g. opiod substitution therapy  Accountability: link funding to legislative environment  Laws \Policies to protect against impacts & consequences ex - Denial of services; ethical practice; HCW & standard of care  Evidence based research and knowledge (politics vs. science) “What do we know and how are we packaging it?”

Advocacy for the future  Fund Advocacy – fund it long term  Advocate for the correct usage of language on HIV – with policy makers, media, etc. (i.e. “vicitims”, “AIDS scourge”)  Build awareness of harmful HIV policies, laws, practices that enable HIV stigma  Advocacy with religious leaders – many people develop their normative views on culture, sex, disease, tolerance from their faith leaders  Advocacy for scaling up program beyond projects We need to: Increase advocacy around the structural, policy and legislative roots of underlying stigma

Summary Gaps Priorities People do not address the underlying layers of HIV stigma Reach out to other areas of social injustice, where these roots lie Advocacy does not target the connection between the roots and symptoms of stigma Link advocacy targeting symptoms with advocacy targeting roots e.g. Violence against MSM, Women, etc. Key elements of other successful HIV advocacy are not being considered Incorporate funding, leadership, accountability, and human rights into the HIV stigma advocacy field Set targets and monitor progress linked to the Universal Access agenda