Patients TB affected community and Civil society involvement

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 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

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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

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What functions do they perform
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What functions do PACCS perform

• Service provision
• Advocacy
• Prevention
• Outreach
• Support groups
• EDUCATION
• STRENGTHEN NATIONAL PROGRAMS
• Monitoring at country level, disbursed and spent
  well
• Govt 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

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Positioning Civil vis-á-vis Public- Mutual
reinforcement - Reinforcing standards
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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
• .

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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

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Focus

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

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Program

• Engaging civil society for resource mobilization
  Sue Perez, Results
• Building active networks Pervaiz Tufail
• Developing patient-led resources Paul Thorn
• Development of Benchmarks Beatrijs Stikkers,
  KNCV
• Conclusion

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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

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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 whats needed
• WHAT TO OPERATIONALIZE THE RESOURCE MOB EFFORTS
  SYNERGIZING DONORS AND AFFECTED COUNTRY CS

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Supporting a patient-led response Bertrand
Kampour

• Actions

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Building active networks Pervaiz Tufail

• Actions

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Developing patient-led resourcesPaul Thorn

• Actions
• 1

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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

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Benchmark questions

• 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?

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Benchmark questions (cont)

• 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 .

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Benchmark questions (cont)

• Need to be worked out into clear benchmarks

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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
  Bertrands perspective
• c. Build global ACSM network (or community) for
  TB control
• Conclusions Pervaiz revisited

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Conclusions (cont.)

• d. Finalize benchmarks a. d.
• ideas how to take this further?
• how to connect to ACSM country-level WG?