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Patients / TB affected community and Civil society involvement

Patients / TB affected community and Civil society involvement. Panel discussion Global Advocacy for Resource Mobilization Sub-group Cape Town Monday November 6, 2007 13.30 – 15.30 hrs. Where does this panel discussion fit. Resource mobilization Media, Messaging and Events

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Patients / TB affected community and Civil society involvement

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  1. Patients / TB affected community and Civil society involvement Panel discussion Global Advocacy for Resource Mobilization Sub-group Cape Town Monday November 6, 2007 13.30 – 15.30 hrs.

  2. Where does this panel discussion fit • Resource mobilization • Media, Messaging and Events • Supporting Other Working Groups • Patients, affected communities and civil society:

  3. Patients, affected communities and civil society: making sure • paccs voice is heard and • paccs power is used

  4. In what respects can PACCS effectivelycontribute to global ACSM/ advocacy for TB control? • In what ways can PACCS effectivelycontribute to global ACSM/ advocacy for resource mobilization • How do we build and support PACCS communities for global ACSM: • Mobilizing and interconnecting ACSM communities • Linking to and utilizing country ACSM networks • Equiping country-level ACSM networks

  5. Who are these groups • Quick brainstorm and identification • Patient champions • Hiv networks PLWHA • Tb patients groups and former patients • Indigeneous groups world wide • Prison populations • Immigrants groups • Civil society in high burden countries rich in active ngos (involved/potentially) in TB groups • Media • Professional groups doctors • Health workers (nurses association • Global NGOs • Community-based groups around policy making (MDGs), donorbased • Religious organizations • National and regional partnership

  6. Defining patients, affected communities and civil society • Highly diverse and heterogeneous • The ears and eyes on country level: source of information and inspiration • The hands and feet on country level: • can get action going, • quick scaling-up and • intensifying the advocacy voice at global level

  7. What functions do they perform

  8. What functions do PACCS perform • Service provision • Advocacy • Prevention • Outreach • Support groups • EDUCATION • STRENGTHEN NATIONAL PROGRAMS • Monitoring at country level, disbursed and spent well • Gov’t accountable • Vis-a vis outreach • Giving testimony – example and inspiration • Technical and social input into TB control guidelines • Linking to the private providers and holding each other to standards

  9. Positioning Civil vis-á-vis Public:- Mutual reinforcement - Reinforcing standards

  10. Objectives of paccs contribution to National TB control • Proper TB control, including • Prevention Patient perspective • Adherence Quality • Overcoming stigma Access • Etc… • Political commitment • Reaching the hard to reach and vulnerable • Involve all service providers • ….

  11. Translating these PACCS functions to ACSM global level • Proper TB control policies: • Contributing PACCS perspectives to all other STOP TB WG • Political commitment: • PACCS contributing to awareness raising for global TB control in international fora • PACCS amplifying the call for resources for TB control at global and country level • Reaching the hard to reach and vulnerable • PACCS sharing good practices internationally how to access all, how to reach out effectively and how to overcome stigma • Involve all service providers • strengthen links to non-public service providers internationally

  12. Focus • How do we build and strengthen PACSS Networks? • For national level roles • How do we strengthen their impact? • For global acsm strengthening roles

  13. Program • Engaging civil society for resource mobilization Sue Perez, Results • Building active networksPervaiz Tufail • Developing patient-led resourcesPaul Thorn • Development of BenchmarksBeatrijs Stikkers, KNCV • Conclusion

  14. Suggested structure • Clearly delineate the subject matter • Define the priority areas for further work • by the global advocacy sub-group • and/or ACSM working group • Open this up for discussion

  15. Engaging civil society for resource mobilization Sue Perez Actions • We need to hear from affected countries - • Conceptualize gaps in financing and where to apply for funding and for what • Demonstrate impact of GR actions • More thinking about TB rep on CCMs – CS role in identifying for CCMs the gaps • CS role in knowledge dissemination • Need to support NTPs on what to ask • HSS and TB – how does it link together • Need more capacity-building of CS in affected countries to do advocacy • CS is critical in creating demand and outrage • How does ACSM organize around what’s needed • WHAT TO OPERATIONALIZE THE RESOURCE MOB EFFORTS – SYNERGIZING DONORS AND AFFECTED COUNTRY CS

  16. Supporting a patient-led responseBertrand Kampour Actions:

  17. Building active networksPervaiz Tufail Actions

  18. Developing patient-led resourcesPaul Thorn Actions: 1

  19. Development of BenchmarksBeatrijs Stikkers, KNCV What are our concerns? What areas do we need to address to optimize the role of paccs • How do we build and strengthen PACSS Networks? • For national level roles • How do we strengthen their impact? • For global acsm strengthening roles

  20. Does global acsm group have effective access to paccs? To national partnerships /informal paccs groups Do these include In-country patient perspectives Does global acsm group have effective (indirect) access to? Politicians and policy makers at country and global level Budgetary processes for TB control at country, bi-lateral, multi-lateral and foundation levels In-country public health and private health professionals Are paccs provided with suitable messaging? Benchmark questions

  21. Are paccs effectively integrated into global acsm through suitable communication structures? Clarity and suitability of communication structures for involving PACCS: Telephone conferences Newsletter Mobilization time when demanded Clarity on interaction of secretariat with/ and support for PACCS Is there a suitable framework for paccs at country level, and is this consistent with needs for global ACSM? What is the mandate of ACSM- global advocacy, and more specifically PACCS What enabling roles of PACCS can be defined More questions …. Benchmark questions (cont)

  22. Need to be worked out into clear benchmarks Benchmark questions (cont)

  23. Concluding Next steps to strengthen roles in global ACSM by patients, affected communities and civil societya. Role in resource mobilization: Conclusions Sue Perez revisited b. Strengthen roles of patient, affected communities and civil society Conclusions Paul revisited, how to integrate Bertrand’s perspective c. Build global ACSM network (or community) for TB control Conclusions Pervaiz revisited

  24. Conclusions (cont.) d. Finalize benchmarks a. – d. • ideas “how to take this further”? • how to connect to ACSM country-level WG?

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