People living with HIV in Orissa State in India supporting others living with HIV A Presentation to IFGH Conference 2012

HIV and AIDS: the situation end of 2011 Global Summary end of 2010 (UNAIDS Nov Report)  Number of PLHIV globally: 34 million  People newly infected with HIV in 2010: 2.7 million  Over 7000 new HIV infections a day in 2010 (about 1000 in children under 15 years old)  PLHIV South and South East Asia: 4 million (22.9 million in Sub-Saharan Africa)  In India 2.4 million people living with HIV (0.3%) (UNAIDS)  Orissa State: 0.26% HIV prevalence among adult pop years (but > 1% in 4 districts where Concern works and in Ganjam district is 3.25%)

Orissa State in India officially called Odisha since Nov th largest State by area Population: Approx. 42 million

Concern Operational Districts in Orissa State Programme Funded by the European Union

Issues  Lack of qualitative data available in India on the effects of HIV and AIDS  People living with HIV are best placed to tell stories of HIV that go beyond public health implications - ‘learning from the lives of others’

Methodology  Qualitative semi-structured interviews, observational techniques & secondary data  Thirteen people living with HIV (aged 22-37) interviewed  Six Women  Seven Men  Case Studies documented and published

Key Findings Analysis of the Case Studies revealed:  High levels of fear of (and actual) discrimination by healthcare providers  Fear of discrimination on disclosure  Feeling of exploitation by NGOs to enhance funding opportunities  Families and communities broadly supportive when HIV status disclosed  Heavy financial burden of ART “When he was paying for his medicine he would just take one tablet a day rather than two in order to make it last longer, many people, even when it is free, delay going to VK as even the trip is costly, when they can’t get financial support they just go late”.

Verbatim Quotes  “At the (PLHIV support) meeting the members were sharing experiences of how they had had HIV for 8 or more years, I questioned them, you must be lying I said, the doctor said I was going to die. I realised I could live” (Nayana)  “My whole life was turned upside down. I tried twice to commit suicide…. I went back to the counsellor and told her what had happened. She gave me hope and made me strong” (Ram) His brother and sister-in-law both know he has HIV, they have always been supportive.

Interviewees advice to those making HIV response policies and programmes -  “What is needed is good nutrition, good medicines and an ART centre”  “I can be given a place to speak, to tell them I am positive, maybe they will come forward, we need awareness that sex is not bad but it should be safer sex.  “How can hijra get a better status in society, they don’t get proper work which they deserve, they cannot get a good position, there is bad feeling. The money given on trains is given in sympathy, I don’t want sympathy I want to have my rights to the same status as others, to live as others.”

Lessons Learnt  Educational advice given by PLHIV consistently covered four areas: ART and adherence; livelihood options; nutrition; and HIV and AIDS knowledge.  The financial burden of HIV was heavy, with loss of livelihood due to poor health and widowhood, and the cost of ART.  The burden fell heaviest on those least able to cope, the extremely poor women living with HIV.

Recommendations  Include people living with HIV in policy development to ensure effective targeting and implementation of programmes; (i.e. GIPA)  Empower people living with HIV to engage in dialogue with governments, NGOs and medical personnel;  Address HIV stigma and discrimination in healthcare settings;  Support people living with HIV to be trained in public health responses to the epidemic;

Hope can overcome Fear Breda Gahan, Global HIV and AIDS Programme Advisor Concern Worldwide HIV and AIDS programme response partners in Orissa State: INP+ RUCHIKA SOVA USS