WHO operational guidance on community based TB activities and progress to date Haileyesus Getahun Stop TB Department World Health Organisation

Outline of presentation Background and rationale Objectives, principles and core contents ENGAGE-TB Approach Progress in piloting and scale up Conclusion

Problem: delay in diagnosis Country (year of study) Median weeks (IQR/Range) Brazil ( ) 1 8 (4-20) Tanzania ( ) 2 12 (10-14) Nepal (2007) 3 7 (5-9) 1. Maior et al, 2012; 2. Hinderaker et al 2011; 3. Basnet et al 2009 Time from symptom onset to seeking medical attention Why do we need integrated community based TB activities?

Problem: Not all identified cases are reported 646 AFB and culture positive cases diagnosed in private laboratories 82 (12.7%) notified to NTP564 (87.3%) not traced Masjedi et al IJTLD 2007 (Iran) 609 household inhabitants on reported TB treatment 331 (54%) DOTS/RNTCP 278 (46%) outside of DOTS/RNTCP Satyanarayana et al PLoS one 2011 (India) Why do we need integrated community based TB activities?

TB can not any more be addressed alone HIV, prison, women, diabetes, alcohol, drug use and smoking Why do we need integrated community based TB activities?

Global monitoring of community based TB activities by WHO Key Issues Confusion on what constitute community based TB activities Lack of clarity on what needs to be collected Weak or no indicators Too much qualitative data and difficult to validate Confusion among terminologies and activities (e.g. ACSM) : haphazard data : no data collected Global TB Control Report

Strong call for simplified WHO guidance “Like the WHO Interim Policy on TB/HIV” WHO Consultation Meeting, October 2010 “Despite the fact that the WHO’s Stop TB Strategy was broadened in 2006 to include empowerment of TB patients and their communities, and the WHO produced a document Community Involvement in Tuberculosis Care and Prevention in 2008, there has been lack of clear guidance on how to implement this component of the TB strategy” Statement of CSOs, October 1, 2010

Process of development Builds on existing WHO guidance and documents Consultations on an earlier draft  Geneva (September 2011)  Lille (November 2011)  Addis Ababa (December 2011) Writing group meeting (May 2012)

Objectives of operational guidance Define community based TB activities Simplification and branding NGOs and other CSOs as key stakeholders Standardized and measurable indicators Strengthen one National M and E system by NTP

Target audience Government stakeholders  NTPs and their equivalents  Health stakeholders in other line ministries Unengaged NGO and other CSOs  Working on health (HIV, MNCH, NCD)  Working on other development areas Patient and community groups (demand generation) Donors and research stakeholders

Principles Mutual respect and understanding Consideration of local context and value Effective linkage into existing services One national Monitoring and Evaluation system

Core content Defining community based TB activities Activities contributing to the prevention, diagnosis, improved treatment adherence and care that positively influence outcomes of all forms of TB. Carried out by community health workers and community volunteers based on national and local context Conducted outside the premises of formal health facilities using community based structures and homesteads

Core content Defining community based TB activities Community health workers  People with formal education  Trained in TB  Role often compensated in kind or cash Community volunteers  Community members systematically sensitized  Short and specific training scheme  Sessions with professional health workers

Examples Community based TB activities TB awareness creation Behavior change communication Community mobilization Reducing stigma and discrimination Screening and testing Sputum collection and transport TB prevention interventions Treatment provision and observation Treatment adherence support Social and livelihood support Community led local advocacy activities

Situation analysis Enabling environment Guidelines and tools TB task identification Monitoring and evaluation Capacity Building ENGAGE-TB Approach Six components of simplified operational guidance

Priority: Unengaged NGOs and FBOs International and regional with  Large global or regional coverage  Support to local NGOs or CBOs  Reliable funding sources (e.g. direct marketing- sponsorship, shops)  Work on HIV, MNCH and health but not TB National  Networks of NGOs and FBOs  Support to CBOs

Piloting and scaling up DR Congo, Ethiopia, Kenya, South Africa, Tanzania

Key expected outcomes More unengaged NGOs/CSOs will take up community based TB activities. Integrated community based TB activities models developed and scaled up (e.g. HIV,MNCH, devt). Community based TB activities branded, scaled up, sustained and monitored. TB programme activity performance improved (e.g. case detection, early diagnosis).

Progress in piloting and scale up Project supported by BMSF/STF to develop models for scale up with ENGAGE-TB approach DR Congo  National consultation carried out  TB in HIV NGOs model – 8 NGOs are readying Ethiopia  TB into MNCH activities – 2 NGOs engaged  National guidance being developed Kenya  National consultation conducted  National guidance under development

Progress in piloting and scale up South Africa  National situation analysis undergone in South Africa  Sensitization of NGOs for mainstreaming TB carried out  National consultation to be conducted Tanzania  Sensitization of NGOs conducted  National guidance being developed Global  Global operational guidance and branding  WHO NGO Forum being established  Basic indicators agreed and will be mainstreamed

Conclusion NGOs play a critical role to improve TB prevention, care and treatment The WHO ENGAGE-TB approach provides the framework for enhanced NGO engagement for community based TB activities Monitoring and evaluation using one national system linked to the NTP is essential