1. Washington D.C., USA, 22-27 July 2012www.aids2012.org “The Road to Washington” Mobilizing communities to create a supportive environment to help end vertical transmission Linda Richter International AIDS Conference, Washington DC 25 th July 2012 Coalition on Children Affected by AIDS (CCABA) Symposium

2. Washington D.C., USA, 22-27 July 2012www.aids2012.org CCABA’s mission.. children 2004 Bangkok 2006 Toronto - Families, scale, integration 2008 Mexico plenary, JLICA - Poverty, social protection 2010 Vienna - Family-centred services 2012 Washington – Community and PMTCT

3. Washington D.C., USA, 22-27 July 2012www.aids2012.org Why this road … ? CCABA’s mission … children Global focus PMTCT – commitment, opportunity for children, families Avert narrowing of goals Potential of “OVC community” capacity

4. Washington D.C., USA, 22-27 July 2012www.aids2012.org Most significant and substantial commitment to children and families since the start of the epidemic Alive with opportunities … GLOBAL COMMITMENTS TO PMTCT

5. Washington D.C., USA, 22-27 July 2012www.aids2012.org Vision: 4 prongs and more Primary prevention of HIV infections among sexually active young people Prevention of unwanted pregnancies Prevention of vertical infection Ongoing care for women, children & families Integrated, family-centred care across the lifecycle

6. Washington D.C., USA, 22-27 July 2012www.aids2012.org Family-centred services

7. Washington D.C., USA, 22-27 July 2012www.aids2012.org To achieve targets … Expanded, better-resourced health services with: Large scale efforts at stigma reduction Involvement of affected women and their families Increased demand & barriers addressed Follow up to ensure wellness Use of PMTCT as an entry point for wider services

8. Washington D.C., USA, 22-27 July 2012www.aids2012.org Community good at … Transmitting key messages – especially to hard-to-reach populations Influencing & supporting household norms and behaviour Increasing access to services as go-betweens Providing complementary services Holding health services accountable

9. Washington D.C., USA, 22-27 July 2012www.aids2012.org We know more, doing better Improved (opt-out) and expanded (community-based) testing More efficacious PMTCT drugs Expanded treatment for women and children Better coverage, less transmission Breastfeeding protected Push to integrate with NMCH, SRH

10. Washington D.C., USA, 22-27 July 2012www.aids2012.org What role for community? Help achieve aspirational targets - implementation challenges - Demand, delivery and enabling environment Challenge inequity, assist with redress Hold leaders accountable to their vision and actions - eg targets – HIV-free survival at what age (6wks, 5y)? Survival and healthy development through social protection, care and support?

11. Washington D.C., USA, 22-27 July 2012www.aids2012.org What can “community” do Advocate / demand: - Comprehensive, equitable quality services - Test and expand promising practices Improve community knowledge & norms Help marginalized groups access services Support women and families Promote child health and development

12. Washington D.C., USA, 22-27 July 2012www.aids2012.org Implementation challenges Too many: women not reached women and children not followed up and treated male partners and other children not tested families without support opportunities missed

13. Washington D.C., USA, 22-27 July 2012www.aids2012.org No of women attending ANC No of women tested No of women who receive their results No of women who receive ARV/ART No of babies tested, treated No of women tested, treated No of families followed up Too many women, children and families lost

14. Washington D.C., USA, 22-27 July 2012www.aids2012.org Promising practices Couples, home-based testing (disclosure, links to treatment, ID +children) Fertility choices for HIV+ couples Routine 6-week testing of all infants Involvement of men (PMTCT, child health & development) Family-centred approaches Companionship

15. Washington D.C., USA, 22-27 July 2012www.aids2012.org Support women & families Economic support Cash transfers, treatment subsidies Incentives to overcome opportunity costs – transport, food etc Health support Mentors, buddies, CHWs Social support Companionship, support groups, home visits

16. Washington D.C., USA, 22-27 July 2012www.aids2012.org Promote child development Knowledge, support, assistance for: Good nutrition in pregnancy, early childhood Immunization and health care Care for development – play, language Reduction of harsh punishment Child care and protection Stimulation, school readiness, support for schooling

17. Washington D.C., USA, 22-27 July 2012www.aids2012.org “OVC” community can help Massive “workforce”, committed to the wellbeing of children Many trained and organized Extensive networks with deep penetration in communities Experienced in working holistically and with families on behalf of children

18. Washington D.C., USA, 22-27 July 2012www.aids2012.org “OVC” community can help Development of responses to children across time

19. Washington D.C., USA, 22-27 July 2012www.aids2012.org The Concept of 0 Child HIV Massive, public, accountable commitment to children Needs a huge, comprehensive effort

20. Washington D.C., USA, 22-27 July 2012www.aids2012.org Road to Washington Geneva Meeting May 2011 Addis Meeting December 2011 JIAS Special Issue Pamphlet to support community action Partnerships and collaborations – eg key populations, IATT CEWG London Meeting February 2012 Washington activities July 2012

21. Washington D.C., USA, 22-27 July 2012www.aids2012.org What did we hear? Inability to reach, enrol and retain women and children Reviews of community work Very large scale programmes integrated with formal health services Innovations eg MAMA+ Voices of affected groups Needs of community groups – recognition, training, resourcing & support

22. Washington D.C., USA, 22-27 July 2012www.aids2012.org Slides from Ryan Phelps and Ade Fakoya

23. Washington D.C., USA, 22-27 July 2012www.aids2012.org By logic model, depth of engagement and level of social processes

24. Washington D.C., USA, 22-27 July 2012www.aids2012.org Slides from Pininah Kyalimpa-Nyimbwa

25. Washington D.C., USA, 22-27 July 2012www.aids2012.org Slides from Roman Yorick

26. Washington D.C., USA, 22-27 July 2012www.aids2012.org Slides from Ginna Anderson

27. Washington D.C., USA, 22-27 July 2012www.aids2012.org Slides from Buyi Ntaka

28. Washington D.C., USA, 22-27 July 2012www.aids2012.org http://www.jiasociety.org

29. Washington D.C., USA, 22-27 July 2012www.aids2012.org JIAS Special Issue Community Action to End Paediatric HIV Infections Foreword by M Sedibe and E Goosby Editorial - introduction 10 papers Note on ‘Language, identity and responses to the HIV and AIDS epidemic’ – women living with HIV, through ICW and GNP+

30. Washington D.C., USA, 22-27 July 2012www.aids2012.org http://www.ccaba.org

31. Washington D.C., USA, 22-27 July 2012www.aids2012.org Key messages Hope and encouragement Support and companionship Partner testing Disclosure Norms and stigma Adherence Infant feeding Health promotion, mental health

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

33. Washington D.C., USA, 22-27 July 2012www.aids2012.org Good ways to hold hands Health services and systems Community action (especially OVC groups) Wellbeing of children and families