Involving the Community in HIV/AIDS Treatment Support Programmes:

1. Involving the Community in HIV/AIDS Treatment Support Programmes: An Evidence-Based Approach

2. Government Policies and Goals (to be inserted by the user) • HIV prevention, treatment and care goals • Community based HIV care and treatment goals • Involvement of civil society organizations in community based HIV prevention, treatment and care

3. Purpose of the Community Based Treatment Support Programme (CBTSP) • The CBTSP is designed to provide effective and comprehensive HIV/AIDS care, increase access to medicines and medical monitoring and establish broad-based community support in resource-limited areas. • The CBTSP model overlays community services that support treatment onto the clinical services provided. • The model emphasizes that people living with HIV and AIDS (PLWHA) in resource-limited settings need both clinical services and community services to effectively enhance their quality of life and achieve and sustain health gains over the long-term. • The model places equal emphasis on supporting the needs of patients receiving antiretrovirals and of patients who are not receiving antiretrovirals because their disease has not yet progressed to treatment according to national treatment guidelines. • The model is based on a five site*, three-year operational research and demonstration project that investigated the 1) feasibility of providing ARV treatment and HIV care in severely resource limited settings; and 2) the added value of community services to clinical outcomes. • * Data from the site in Koulikoro, Mali are not included in the data presented here because the pilot study is still ongoing there.

4. CBTSP: Models of Care and Partnership

5. Caprivi Koulikoro Bobonong Mbabane Ladysmith Maseru Six Community-Based Treatment Sites MALI NAMIBIA BOTSWANA SWAZILAND LESOTHO SOUTHAFRICA

6. Outcomes

7. Outcomes • Increased efficacy. Overall efficacy of 64%, where efficacy was defined as sustainable, greater-than-50 increase in CD4 count. • Rapid uptake of voluntary counselling and clinic services. Increased more than 10 fold within three months of starting community mobilization. • Increased adherence. 12 months after starting therapy, 84.5% of patients were more than 95% adherent (equivalent to missing at most only one dose per month). • Increased CD4 counts. As demonstrated by an increase in CD4 counts from 105 at baseline to 270 at 12 months. (Normal CD4 counts in adults range from 500 to 1,500 cells per cubic millimeter of blood).

8. Outcomes: Added Value of Community Support • CD4 counts increased to significantly higher levels and at an accelerated rate in patients on ARVs who accessed community support than those who did not: 326 vs. 268. • Patients satisfied with the level of community support they received also experienced better quality of life and adhered better to their ARV medication than those who were not satisfied. • Food security and home-based care were the two services statistically related to better adherence. • The lost-to-follow-up rate in Secure the Future CBTS programmes was only 5.1%. In Swaziland’s Prevention of Mother-to-Child Transmission programme, all 224 women and their babies were accounted for up until 12 months of the child’s age, thanks to community workers who intensively tracked defaulters. • Community services helped prepare patients for antiretroviral therapy and “leveled the playing field” by dealing with psychosocial problems, inadequate nutrition and logistical issues such as transport to the clinic and disclosure of status to a significant other.

9. Research Conclusions • Community and family support to patients on ART have a significant effect on reducing stigma and discrimination and HR-QoL • Community and family support to patients on ART have a significant effect on accelerating the improvement of CD4 counts

10. Community and family support impact stigma, QOL and CD4 • Patients* satisfied with the community support they receive have the following better outcomes than those not satisfied; • a) Statistically significantly greater reduction in perceived stigma • b) Statistically significantly greater improvement in QOL • Patients accessing community services • c) Statistically & clinically significantly greater increase in CD4 count than those not accessing such services • (*587 patients by enhanced evaluation)

11. An Example of Impact on a community • CBTSP Site: Bobonong Primary Hospital • Hospital bed occupancy by HIV/AIDS patients reduced from 93% to 52% from 2004 to 2006 • Hospital mortality from HIV/AIDS reduced from 25% to 13% over the same period

12. Back-up slides with outcomes charts

13. Community mobilization leads to rapid VCT and HIV clinic uptake • Intensive community mobilization using door-to-door campaigns and public events reach: • More than 150,000 people • Complemented by radio and television broadcasts

14. Encouraging Results Clinical Data • Over 17,000 patients enrolled • Over 8,000 patients on ARVs • Median CD4 count increased from 94-282 at 12 months of treatment • Viral load undetectable; 92% at 12 months • Response by intent-to-treat; 64% • Only 1% of patients progressed to 2nd line • 84% of patients at 95% compliance

15. Key Community Indicators • ARV clients on HBC; 1,491 • non-ARV clients on HBC; 1,398 • clients attached to buddies; 790 • clients in support groups; 3,859 • ARV clients getting food parcels; 866 • non-ARV clients getting food parcels; 1,403 • clients trained in food security; 2,953 • clients trained in IGA; 587 • Number of door-sized gardens; 2,551

16. Community services prepare patients for ARV therapy • 3463 patients assisted to disclose status • 4084 patients provided with adequate food security • 368 patients assisted with transport to the clinic • 69 patients receiving essential psychosocial support • 50 defaulting patients traced by community workers

17. Enhanced Patient Evaluation

18. Instruments for Data Collection • Five types of instruments: • Baseline • Health Related Quality of Life • Adherence • Stigma and discrimination • Exposure to intervention

19. Percentages of patients accessing various community support services

20. Community support is crucial in the reduction of actual stigma

21. Change in CD4 count in patients exposed and not exposed to community services ; patients with baseline CD4 < 50

22. 350 P value at baseline & 12 months = 0.00 P value at 12 months difference = 0.02 319 300 269.5 250 236 226 200 Median CD4 count 150 133 124.5 100 50 0 Baseline 6 months 12 months No BMS services recieved Has received BMS services Change in CD4 count in patients exposed and not exposed to community services ; all patients

23. Results of Multiple Regression on CD4 Count At 12 Months Standard Factor Coefficient error P-value Has received BMS intervention services in the last 4 weeks 39.19 17.3 0.02 Control Factors Baseline CD4 Count 0.56 0.10 0.00 HR QoL increased between baseline and 12 months 0.40 0.70 0.57 Age greater than 35 years -45.85 18.28 0.01 Female 32.31 19.19 0.09 Secondary schooling 34.72 18.31 0.06 Constant 207.28 28.23 0.001 Exposure to community service has a significant effect on accelerating the improvement of CD4 counts of patients on ART (results of multivariate analysis)