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

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

making sure paccs voice is heard and paccs power is used

In what respects can PACCS effectively contribute to global ACSM/ advocacy for TB control? In what ways can PACCS effectively contribute 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

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

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

What functions do they perform

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

Positioning Civil vis-á-vis Public: - Mutual reinforcement - Reinforcing standards civilPublic

Objectives of paccs contribution to National TB control Proper TB control, including –PreventionPatient perspective –AdherenceQuality –Overcoming stigma Access –Etc… Political commitment Reaching the hard to reach and vulnerable Involve all service providers ….

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

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

Program 1.Engaging civil society for resource mobilization Sue Perez, Results 2.Building active networks Pervaiz Tufail 3.Developing patient-led resources Paul Thorn 4.Development of Benchmarks Beatrijs Stikkers, KNCV 5.Conclusion

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

Engaging civil society for resource mobilization Sue Perez Actions 1.We need to hear from affected countries - 2.Conceptualize gaps in financing and where to apply for funding and for what 3.Demonstrate impact of GR actions 4.More thinking about TB rep on CCMs – CS role in identifying for CCMs the gaps 5.CS role in knowledge dissemination 6.Need to support NTPs on what to ask 7.HSS and TB – how does it link together 8.Need more capacity-building of CS in affected countries to do advocacy 9.CS is critical in creating demand and outrage 10.How does ACSM organize around what’s needed 11.WHAT TO OPERATIONALIZE THE RESOURCE MOB EFFORTS – SYNERGIZING DONORS AND AFFECTED COUNTRY CS

Supporting a patient-led response Bertrand Kampour Actions:

Building active networks Pervaiz Tufail Actions

Developing patient-led resources Paul Thorn Actions: 1

Development of Benchmarks Beatrijs 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

Benchmark questions 1.Does global acsm group have effective access to paccs? 1.To national partnerships /informal paccs groups 2.Do these include In-country patient perspectives 2.Does global acsm group have effective (indirect) access to? 1.Politicians and policy makers at country and global level 2.Budgetary processes for TB control at country, bi-lateral, multi-lateral and foundation levels 3.In-country public health and private health professionals 3.Are paccs provided with suitable messaging?

Benchmark questions (cont) 4.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 5.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 6.More questions ….

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

Concluding Next steps to strengthen roles in global ACSM by patients, affected communities and civil society a. 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

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