© 2005, CARE USA. All rights reserved. Community-based Approaches for Addressing Barriers to PPTCT Uptake and Follow-Up: Current Experience and Areas for Exploration/Research William C. Philbrick, Director, HIV/AIDS, Emerging & Infectious Diseases, CARE

© 2005, CARE USA. All rights reserved. Outline  CARE Background  Approach to HIV and AIDS, PPTCT  Barriers and Gaps in PPTCT: Lens for Analysis  Summary of Lessons Learned from our Programs  Areas for Exploration and Research

© 2005, CARE USA. All rights reserved. CARE-Where We Are Today Serving >59 million people in nearly 72 countries Agriculture Education Emergency Health Microfinance Water

© 2005, CARE USA. All rights reserved. HIV and AIDS: Not just a health issue  HIV is a development issue; poverty is both a cause and a consequence of HIV and AIDS  Commitment to women and girls  Address vulnerability to HIV and AIDS  Social relationships and marginalization  Gender disparities  Economic impoverishment  Community-based responses

© 2005, CARE USA. All rights reserved. CARE’s PPTCT Programs  Kenya  Zambia  Mozambique  Haiti  Cameroon

© 2005, CARE USA. All rights reserved. Cascade of PPTCT Services Counseling and testing during ante-natal period Antiretroviral prophylaxis for HIV + mothers and support for safe infant feeding Intra- partum testing and prophylaxis Post partum prophylaxis during B/F Cotrim 1 to all mums and exposed infants at 6 weeks Early testing, diagnosis and delivery of results for infants Access to treatment and care for infected children Ongoing access to ART and follow-up for mothers who need it for their own survival Source: Peter McDermott, CIFF

© 2005, CARE USA. All rights reserved. PPTCT Cascade Those who attend ANC clinic 92% Those who counseled and tested for HIV, CD4 75 % Those who get ARVs (pre- and perinatal) 50% Of 100 HIV+ mothers entering in the program Source: CIFF analysis based on the presentation by P. Barker at WHO PMTCT consultation meeting Nov 2008 * Excludes the # of infants infected after birth during breast feeding

© 2005, CARE USA. All rights reserved. CARE’s Experience: Most Significant Issues 1) ARV adherence and retention 2) Follow-up of mother and child 3) Early Infant Diagnosis (Dried Blood Spot test) 4) Stock-outs, disruptions of supplies (particularly tests)

© 2005, CARE USA. All rights reserved. Looking at PPTCT as a Value Chain Source: Elaine Abrams, Columbia University; Theresa Betancourt, FXB Center for Health and Human Rights

© 2005, CARE USA. All rights reserved. Communities: Addressing the Underlying Causes  Key stakeholder in the Health System…which does not stop at the facility level.  Understanding, addressing and leveraging social dynamics and relationships within communities can address the underlying causes of the gaps and attrition in PPTCT programs:  Stigma  Lack of information  Lack of understanding  Economics (insufficient funds/poverty)

© 2005, CARE USA. All rights reserved. Communities Add Value to PPTCT Value Chain  Facilitate linkages in services (for holistic interventions)  Leverage social constructs and social dynamics of individual relationships to improve outcomes  Address the psycho-social component that can impede or improve uptake and outcomes  Stigma and discrimination  Social networks  Trust  Depression and feelings of isolation

© 2005, CARE USA. All rights reserved. Specific Models  Linkages to community-based traditional birth attendants - promoted EID and follow up care; gradual increase in hospital referrals from the community. Pregnant women are better informed about HIV transmission, voluntary counseling and testing (VCT) and PPTCT modalities  Linking HIV+ mothers to CBVs of their choice - increased uptake due to enhanced confidentiality. Familiarity and trust based upon community relationships served to improve access.  Involvement of male partners in PPTCT- involvement of traditional and local leaders promoted male involvement -accompany their spouses to the health facility for PPTCT services  Community-based SAA methodology (Social Analysis and Action) - SBCC strategies can be used to understand and address barriers to PPTCT uptake and loss to follow up, as well as harmful cultural practices. (Siaya: uptake in family planning increased from 38% to 68.7% in one year)

© 2005, CARE USA. All rights reserved. Specific Models (cont.)  Social cohesion through group work–  Community-based “Mother-to-Mothers-to-Be” groups of women living with HIV (pregnant or nursing mothers) providing psychological supports to one another.  Self-selected income generation groups have further increased the level of adherence (levels of trust within groups promoted conversations around adherence, family planning, nutritional counseling).  Community-based associations - Provide awareness at the community level on VCT, PMTCT positive living and tracking of hospital defaulters including pregnant, nursing mothers and their children – increased uptake of all services around PPTCT. Facilitated coordination of various interventions.  e.g, OVC Committees

© 2005, CARE USA. All rights reserved. For Further Research  Community-initiated early childhood development (ECD) and PPTCT integration – Facilitating follow-up Source: Elaine Abrams, Columbia University; Theresa Betancourt, FXB Center for Health and Human Rights

© 2005, CARE USA. All rights reserved. Areas for Further Research  Community-based (self-selected) VS&L Groups to generate income to pay for travel and nutritional needs (Kenya, Uganda studies, 2009, 2010)  Correlation between maternal depression and service uptake (Knitzer, Theberge, Johnson).  Male involvement and increased uptake [ Greater uptake of testing (Homsy, 2006) ; Greater uptake of antiretrovirals (Bajunirwe, 2005) ]

© 2005, CARE USA. All rights reserved. Areas for Further Research  Community-based social support networks (recent randomized control studies)  Mobile phone technologies to increase uptake (follow-up of mother and child, reduced feelings of isolation, increased adherence)  Current randomized control trials show correlation (i.e. Technau et al, 2011)  Mobile phones used to not only do follow-up for appointments, but as a means for creating and facilitating social networks, which lead to better outcomes.  Better and more accurate information for decision- making (prevent stock-outs, allocation of resources)

© 2005, CARE USA. All rights reserved. Thank You!