1. Supporting community action on AIDS in developing countries Supporting community action on AIDS in India Children Affected By AIDS in Low and Concentrated HIV Epidemics Umesh Chawla International HIV/AIDS Alliance in India

2. Supporting community action on AIDS in developing countries Presentation Overview Scale of the Challenge Barriers to Identification Situation and Needs of CABA Barriers to Services Programming Challenges Policy Implications Role of Civil Society in Response Successful and Innovative Approaches

3. Supporting community action on AIDS in developing countries Scale of the Challenge Total number of people living with HIV 33.2 Million Young people aged 15–24 living with HIV 5.4 million Children below 15 years living with HIV 2.5 Million Source: UNAIDS/WHO estmates, 2007. There are no clear estimates of children affected by HIV/AIDS

4. Supporting community action on AIDS in developing countries The HIV/AIDS epidemic is hidden, often children of are from already marginalized groups such as sex workers (SW), Injecting Drug Users (IDUs) and spouses of Men who have Sex with Men (MSM) Limited number of people are testing for HIV HIV/AIDS related stigma is very high In low prevalence settings case detection is very expensive and challenging Legal age of consent for HIV testing Services and accessible technology needs to keep up with the demand e.g. PCR for children less than 18 months exposed to HIV Barriers to Identification

5. Supporting community action on AIDS in developing countries Highly vulnerable and especially in context to marginalized population i.e. SW, IDU and MSM Programmes that exist are based on clinical services reaching out to a limited number of those in need The programmes pay little attention to the psycho-social needs of children Limited legal protection especially for orphans Situation and Needs of CABA

6. Supporting community action on AIDS in developing countries

8. Often CABA are even more isolated and vulnerable than other OVC Lack of children focused services e.g. VCT, SRH and treatment services. These services need to be adapted to address children Little attention to age and gender specific needs of children The marginalized population already have limited access, their children also suffer the same Lack of childrens participation in situational analysis and design of programmes Situation and Needs of CABA …..contd.

9. Supporting community action on AIDS in developing countries Limited availability and access to HIV and SRH related services in general and especially for young people and marginalized populations High level of stigma and discrimination Criminalization of the marginalized populations Lack of political commitment Children came into focus late, maximum proportion of the limited resources where invested on prevention and treatment of adults Programmes often a result of a reactive response rather than forward planning Often targets are set for HIV infected children only Pediatric OI management and ART - Availability, accessibility and knowledge Barriers to Services

10. Supporting community action on AIDS in developing countries Programming Challenges Which children do we target for services? Infected, orphans or CABA Families with CABA already in dire economic circumstances and socially isolated Orphaned CABA are not taken care of by relatives due to fear, stigma and economic challenges of host families High levels of abuse, malnourishment, dropping out of school

11. Supporting community action on AIDS in developing countries Women bear the maximum impact, e.g. In India, 50 % of households are single mothers and their children are already socially isolated and economically vulnerable Often the children are forced to take responsibility for supporting families by working Few peer support programmes for CABA Basic as well as psycho-social needs of family have to be addressed simultaneously– food, shelter, education, counselling and supportive environment Community versus institutional care – both present huge challenges Programming Challenges...contd.

12. Supporting community action on AIDS in developing countries Policy Implications Political commitment to ensure children specific data is captured and used – nationally and internationally Universal access targets do not prioritise the needs of CABA in low and concentrated prevalence countries In ASIA, majority of programmes for children are implemented by governments with low political commitment to meeting needs of marginalised populations and by extension their children Particularly challenging with HSS approach – few governments prepared to address to meet challenges of marginalised pops and/or fund civil society organisations who are often best-placed to respond Barriers to access of services must be addressed systematically: Rights to participation, education and life-skills training – sex education, SRH, child labour issues, consent to HIV testing

13. Supporting community action on AIDS in developing countries Role of Civil Society in Response Bring forth the real needs of people to the national governments, donors and international policy makers Facilitate accountability and transparency Civil society are bring unique and much needed resources and experience Often best placed to work with marginalised populations due to peer- based approaches, emphasis on confidentiality and building trust Holistic approach in service delivery and establish linkages- mainstreaming Demand generation, mobilisation and provision for C&T, PMTCT, treatment and adherence support done at community level Instrumental in scale up of services and quick response and help countries reach universal access targets Stigma reduction programmes are done in communities by the communities Demonstrate innovative, community focused and sustainable approaches

14. Supporting community action on AIDS in developing countries Successful and innovative approaches Taking a family centred approach – must see child within home/care network Reaching out and meeting children where they live Strengthen links between health services and community-based organisations for bi-directional referrals Governments with PLHIV and marginalised population networks working together: making them a part of the solution not the problem Partnership between civil society organisations, local and national governments in analysis, planning and programme funding

15. Supporting community action on AIDS in developing countries Increase access to child sensitive services e.g. C&T, PMTCT, social support services, education, treatment and child friendly SRH services Reducing stigma by working with health service providers to provide sensitive services and maintain confidentiality Participation of Children living with HIV/AIDS and CABA is central to analysis, planning and solution creation Strengthen legal services for succession planning and education Successful and innovative approaches ….contd.

16. Supporting community action on AIDS in developing countries Conclusions Low and Concentrated Epidemics Must respond to the challenges and needs of marginalised, stigmatised and criminalised groups Increase political commitment and its implications for support for and access to specialised children services Fund research to inform present and future needs? Ensure programmes are culturally and contextually specific e.g. India has a very different epidemic to Eastern Europe Recognise the unique role of civil society and advocate, prioritise and funding civil society actors Increase participation of children, families and communities in the analysis, planning and programme design

17. Supporting community action on AIDS in developing countries Supporting community action on AIDS in India Thank You