Washington D.C., USA, 22-27 July 2012www.aids2012.org

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

Washington D.C., USA, 22-27 July 2012www.aids2012.org

Why Ask People Living with HIV?

• Human dignity• Reliability• Appropriate for high and low prevalence settings

– Salience– Replicable

• Identification of emerging trends• Empowerment

Washington D.C., USA, 22-27 July 2012www.aids2012.org

Introducing the PLHIV Stigma Index

Joint initiative of: International Community of Women Living with HIV (ICW) International Planned Parenthood Federation (IPPF) 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

Washington D.C., USA, 22-27 July 2012www.aids2012.org

Selection of Participants

• Purposive sampling• Focus

– 3% of the number of people 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

Washington D.C., USA, 22-27 July 2012www.aids2012.org

What does the index look like?

Factors of stigma and discrimination the questionnaire addresses:

1. Experience of stigma & discrimination from others

2. Access to work, education, and heath services

3. Internal stigma and fears

4. Rights, laws and policies

5. Effecting change

6. Testing & diagnosis

7. Disclosure & confidentiality

8. Treatment

9. Having children & reproductive and sexual health care

10. Self-assessment of effects of stigma & discrimination

Washington D.C., USA, 22-27 July 2012www.aids2012.org

26

23

21

17

10

88

Migrant workersFemale sex workersMen who have sex with menPrisonersInjecting drug usersInternally dis-placed personsIndigenous group

Key Populations: Myanmar

Washington D.C., USA, 22-27 July 2012www.aids2012.org

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

Washington D.C., USA, 22-27 July 2012www.aids2012.org

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%

Washington D.C., USA, 22-27 July 2012www.aids2012.org

Discrimination by Health Care Workers

Estonia and Philippines 8%

China 12%

Moldova 14%

Zambia 15%

Paraguay and UK 17%

Poland, Turkey, and Ukraine 20%

Denial of health services because of HIV status in the last 12 months

Washington D.C., USA, 22-27 July 2012www.aids2012.org

Internalized 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%

Washington D.C., USA, 22-27 July 2012www.aids2012.org

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%

Washington D.C., USA, 22-27 July 2012www.aids2012.org

Effecting Change in Kenya

Yes No

Yes 75% (577) 25% (192)

No 26% (74) 74% (207)

p=0.000

In the last 12 months, have you confronted, challenged or educated someone who was stigmatizing you?

Are you a member of a PLHIV network?

Washington D.C., USA, 22-27 July 2012www.aids2012.org

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

Washington D.C., USA, 22-27 July 2012www.aids2012.org

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 ensured

confidentiality– Initiative against workplace discrimination