1. AIDS 2012 - Turning the Tide Together IAS Satellite: Where the Tide Will Turn: How is Community Level Participation Most Effective in Turning the Tide? Ashraf Grimwood, G Fatti, M Malahlela, E Mothibi Kheth’Impilo, South Africa

2. Context South Africa is a MIC with LIC health outcomes Population of 50m, 5.6m HIV infected Antenatal HIV prevalence 30% Maternal mortality 310/100000 as @ 2009 Neonatal mortality rate 14/1000 live births Infant mortality 40/1000; <5 mortality rate 56/1000 live births Unemployment officially 24% (reality 60%) 70% rural children nutritionally challenged One of the most obese nations in the world with high levels of violence/trauma Largest HIV burden Second highest TB incidence -948/1000 and 70% dually infected Government launches the NSDA, re-PHC as well as NHI with an essential component being community systems & services strengthening besides HSS

3. Intervention South African NGO - founded in 2009 Vision: An AIDS Free Generation in our time Objectives: To support the SAG achieve its goals for the scale up of quality services for the management of HIV/TB in the Primary Health Care sector as outlined in the National Strategic Plan, NHI & re-PHC. Work in close partnership with the Health departments to provide comprehensive services for the management of HIV & TB in primary health care facilities. Partner with other government departments to support the psychosocial needs of infected and affected families. Strengthen community adherence & psychosocial support for improved HIV treatment outcomes through community health care workers or Patient Advocates- paid workers, on contract with benefits like all staff

4. Patient Advocate Support Structure AREA COORDINATOR PA PRIMARY HEALTH CARE CENTRE (Clinics) DISTRICT OFFICE NATIONAL OFFICE COMMUNITY HEALTH CENTRE  Site Facilitator  CSC District Coordinator  CSC Trainer  Doctor  Nurse  Pharmacist  PMTCQuality Mentor  Social Worker  Data Quality Manager Roving SWAT TEAM  Site Facilitator

5. Objectives: Estimate effect of Clinic & Community Based Adherence Support on mortality, loss to follow up, & virological suppression in adults and children receiving ART. Multicentre cohort analysis using routinely collected data. ART naïve patients starting ART between Jan 2004 and Sep 2010 at 57 government ART sites in 4 provinces. Patients categorised as receiving or not receiving CBAS from the start of ART. Virological suppression (< 400 copies/ml) at six-monthly intervals until 5 years of ART, by intention to treat analysis. XIX International AIDS Conference www.aids2012.org Methods

6. Results 66,953 adults included, 29.4% received community support. Total observation time was 100,295 person-years Deaths: 970 (4.9%) CBAS patients; 2,968 (6.3%) non-CBAS patients. (P < 0.0001) LTFU: 1,185 (6.0%) CBAS patients and 4,498 (9.5%) non-CBAS patients. (P < 0.0001) Virological suppression (at six months): -CBAS patients: 76.6% (95% CI: 75.8%-77.5%) -Non CBAS patients: 72.0% (95% CI: 71.3%-72.5%) (P < 0.0001) XIX International AIDS Conference www.aids2012.org

7. Virological suppression by intention-to-treat on ART XIX International AIDS Conference www.aids2012.org Proportions with virological suppression Months on ART

8. Mortality in adults with and without PAs Months on ART without PAs with PAs logrank P < 0.0001

9. Loss to follow up in adults with and without PAs without PAs with PAs logrank P < 0.0001

10. Retention in care - children with and without PAs with PAs without PAs Retention in care logrank P = 0.027 Adjusted hazard of attrition of patients with PAs: 0.57 (CI: 0.35–0.94) 3563 children included, 323 (9%) received community support

11. Mortality in children with and without PAs Adjusted hazard of mortality of patients with PAs: 0.40 (CI: 0.15–1.06) Corrected mortality without PAs with PAs logrank P = 0.060

12. Summary of effectiveness of community adherence support Adults Mortality: 35% reduction, aHR 0.65 (95% CI: 0.59-0.72) Loss to follow up: 37% reduction, aHR 0.63 (95% CI: 0.59-0.68) Virological suppression: After 6 months: 22% improvement, aOR 1.22 (95% CI: 1.14-1.30) After 5 years: 2.6 fold improvement, aOR 2.6 (95% CI: 1.6-4.4) Children: Mortality: 61% reduction, aHR 0.39 (95% CI: 0.15-1.04) Program attrition: 43% reduction, aHR 0.57 (95% CI: 0.35-0.94) Virological suppression: 60% overall improvement, aOR 1.60 (95% CI: 1.35-1.89)

13. Adaptive Programming Data collection is paper based- need electronic HH devices- constantly being reworked No standard SAG community adherence indicators- KI developed their own Staff management challenges in the community overcome by area coordinators Patient linked to CCWS in clinics established through patient facilitators

14. Key considerations for Replication The large-scale implementation of clinic linked community based adherence support programs is shown to improve survival and retention in care for adults & children receiving ART Scale-up of these programs should be considered as a critical part of the clinical intervention & be linked & coordinated with the clinical program for greater community impact Quality of service depends on ongoing didactic training, supervision, mentoring & support/debriefing of community workers This intervention is community development in action through job creation & further career development

15. Acknowledgement THANK YOU This research was made possible by the President's Emergency Plan for AIDS Relief (PEPFAR) through the United States Agency for International Development (USAID) under the terms of grant no. P3121A0051 & Global Fund. The contents of the presentation are the sole responsibility of “Kheth’Impilo” and do not necessarily reflect the views of USAID or the United States Government.