Hearing from People Living with HIV: Global lessons from the PLHIV Stigma Index Laurel Sprague The Global Network of People Living with HIV, North America (GNP+NA) Wayne State University, Detroit, MI, USA

Why Ask People Living with HIV? Human dignity Reliability Appropriate for high and low prevalence settings Salience Replicable Identification of emerging trends Empowerment Dignity – information about people is gathered from them directly, not just “about” them. They/we have a voice. Reliability – the idea that you are measuring what you intend to measure. Asking PLHIV about their concrete experiences with S&D within a specific period of time (did X happen in the last year?) is more likely to provide a reliable response than asking a community member (do PLHIV experience X in this community) Salience and Replicability – solves the problem of general population questions working differently in high v low prevalence settings. Salient for PLHIV whether setting is high or low prevalence, therefore questions can be asked globally. Identification of emerging trends – researchers can’t guess ahead of time all of the ways that S&D affect people in a particular area and S&D may shift over time as responses to the epidemic shift. Asking those at the center of the experience allows the identification of issues that would otherwise be invisible. Highlight the open-ended questions at the end and the follow up case studies on this point. Empowerment – involving those targeted by S&D in the response to the problem. Not asking PLHIV to sit back while others discuss and solve.

Introducing the PLHIV Stigma Index Joint initiative of: International Community of Women Living with HIV (ICW) International Planned Parenthood Federation (IPPF) United Nations Joint Programme on HIV/AIDS (UNAIDS) Global Network of People Living with HIV (GNP+) Measures PLHIV experiences with stigma, discrimination, and human rights violations Participative research based in GIPA principle and human rights The founding partners were all four of the organisations. The current international partnership is the three organisations whose logos you see 3

The PLHIV Stigma Index… translates individual and community experiences into language that decision-makers value and can use

Selection of Participants Purposive sampling Focus Usually 3% or more of the number of people known to be living with HIV in a country or sub-country region Inclusion of key populations Goal Data that is broadly indicative of the range of experiences of PLHIV in an area Collecting random samples of PLHIV is not possible, therefore the PLHIV stigma index uses purposive sampling. That is, each country team decides where to focus their recruitment of participants in order to gain a sample that is broadly inclusive of the key affected populations in their country. This process can include recruitment from a mix of urban and rural locations, support groups, clinics, and other networks of key population groups. The research teams attempt to include approximately 3% of the number of people known to be living with HIV in a country or sub-national region, such as a province or state. Within this sample, efforts are made to recruit members of key populations.

What does the index look like? Factors of stigma and discrimination the questionnaire addresses: Experience of stigma & discrimination from others Access to work, education, and heath services Internal stigma and fears Rights, laws and policies Effecting change Testing & diagnosis Disclosure & confidentiality Treatment Having children & reproductive and sexual health care Self-assessment of effects of stigma & discrimination In some countries there have been an additional modules that asks specifically about barriers to uptake of testing and treatment, other such modules or additional questions that are country or PLHIV populations specific can be appended with the agreement of the international partnership

Key Populations: Myanmar The following slides provide some examples of what the PLHIV Stigma Index measures. Demographics and key populations: “Hard to reach” populations CAN be reached, even in what seems to be the most difficult environments

Social Stigma in the UK In the last 12 months: 63% have been the subject of gossip For 77% of these, this was in part or all because of HIV status 22% have been physically harassed For 54% of these, this was in part or all because of HIV status Some examples of what we can learn from the PLHIV Stigma Index

Family Exclusion in China Excluded from family life/activities: 5% of sample Response to HIV infection was supportive or very supportive 69% of spouses/partners 62% of other adult family members 80% of children However, what percent disclosed to close family members? Only 50 to 61% 22 July 2010 Combination HIV Prevention Evaluation

Discrimination by Health Care Workers Denied health services because of HIV status in the last 12 months Estonia and Philippines 8% China 12% Moldova 14% Zambia 15% Paraguay and UK 17% Poland, Turkey, and Ukraine 20% Social Desirability bias in health care worker survyes Bangladesh – 6% said behavior of health professionals is the main barrier to testing China – 26% said health care workers responded in disc or very discrim ways upon disclosure 1010 10

Anticipated Stigma “I avoided going to a local clinic / hospital when I needed to” (last 12 months) Rwanda and Turkey 8-10% Estonia 11-17% Bangladesh and Moldova 17-21% Poland and Ukraine 18-26% Paraguay 38-40% Paraguay - (various personal statements indicated that this was because they didn't want to disclose their HIV status)

Issues with HIV Testing Forced to Test (Tested without consent or without knowledge) Zambia 13% Paraguay 24% Poland 29% Ukraine 31% Estonia 34% Philippines 44% Moldova 52% Turkey 66% Can help to identify negative repercussions and unintended consequences, for example, in campaigns to increase HIV testing. Social practices and social / legal requirements impact individual testing patterns. High number testing only when showing up with symptoms indicates social practices that do not facilitate early testing among at risk populations (which may be almost everyone or may be specific communities). Role of social/legal requirements such as employment testing, pre or antenatal testing, and opt-out testing which can lead to testing without consent or knowledge Kenya – 23% referred du to suspected HIV related symptoms In addition, 27% in DR and 35% in China received no counseling, 16% in myanmar, 31% Philippines, 32% UK 56% Philippines tested voluntarily 30% tested without their knowledge 77% in Paraguay tested voluntarily 15% tested under some level of coercion 9% tested w/o consent 12 12

Effecting Change in Kenya In the last 12 months, have you confronted, challenged or educated someone who was stigmatizing you? Yes No 75% (577) 25% (192) 26% (74) 74% (207) Are you a member of a PLHIV network? Compelling information from Kenya, indicating that it might be useful to follow up with some case studies to better understand this relationship and see if it can support calls for increased peer and psycho-social support. p=0.000

Human Rights Violations in the Philippines 23% reported at least 1 human right abuse in the last 12 months Of these, 17% tried to get legal redress Main reasons for not attempting redress: Intimidated or scared Insufficient financial resources No or little confidence of success Information about how the legal system may need strengthening to make protective laws a reality for PLHIV Example of structural level effects and how they link with individual/hehavioral and social level effects 14

an on-going human rights monitoring program in health facilities Impact of the Index Swaziland Development of a National Framework to Address Stigma and Discrimination in Swaziland (currently in its final stages) Implementation of an 'expert client' program in health facilities and communities On-going human rights monitoring program in health facilities Fiji Strengthened counselling services Ensured inclusion of clauses on stigma and discrimination and confidentiality in the HIV decree of 2010 Estonia Scale up voluntary counselling and testing (VCT) programs that ensure confidentiality Initiative against workplace discrimination, in collaboration with employers Recent advocacy work resulting from Stigma Index results. All of these projects were led by the national network of PLHIV. Three examples: Swaziland development of a National Framework to Address Stigma and Discrimination in Swaziland (currently in its final stages) the implementation of an 'expert client' program in health facilities and communities, arguing that PLHIV can provide quality counselling to other PLHIV to address issues of stigma and discrimination because they understand how their peers are experiencing being HIV-positive in Swaziland an on-going human rights monitoring program in health facilities When the Fiji Network for People Living with HIV and AIDS (FJN+) conducted the Index in 2010, a high percentage of respondents reported internal stigma, including guilt, blame and low self-esteem. Since 2010, FJN+ has successfully advocated to… Estonia, results showed high levels of concern about discrimination in employment and lack of confidentiality when accessing HIV testing. Scale up voluntary counselling and testing (VCT) programs that ensured confidentiality. initiative against workplace discrimination, in which local and national corporations signed up to the International Labour Organization (ILO) Standard 200 for decent work conditions and also signed commitments to publicize that they welcomed HIV+ employees.