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Closing Remarks CPTR 2012 WORKSHOP

Closing Remarks CPTR 2012 WORKSHOP . Carol Nawina Nyirenda – Patient Advocate Executive Director Community Initiative for TB, HIV/AIDS & Malaria (CITAM+), Lusaka, Zambia. What CPTR means to affected communities. CPTR Mission

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Closing Remarks CPTR 2012 WORKSHOP

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  1. Closing RemarksCPTR 2012 WORKSHOP Carol NawinaNyirenda – Patient Advocate Executive Director Community Initiative for TB, HIV/AIDS & Malaria (CITAM+), Lusaka, Zambia

  2. What CPTR means to affected communities CPTR Mission Accelerate the development of new, safe, and highly effective regimens for TB by enabling early testing of drug combinations. TB still an issue especially TB/HIV co-infections and drug resistant strains • More research • New drugs - FDC • Shorter regimens • Inclusion of affected communities in the Advisory Panel andStakeholder and Community Engagement Working group • Release of the Good Participatory Practice Guidelines for TB Drug Trials (GPP-TB) framework for effective engagement of all • A matter of life and death – Healthier and longer lives

  3. Community Engagement Includes… • Reality check: real people at the end of the line • First hand experience with the diseases (experts with degrees from the University of Life!!) • Builds community demand and supports TB treatment literacy (we’re advocates and peer supporters at home!) • Living and/or working among/within the affected communities • A bridge between the communities and the global efforts • Advocates at country and international levels

  4. Channels of Engagement • African Coalition on Tuberculosis (ACT!) • Community Task Force of Stop TB Partnership (BUT STP needs to deliver on its responsibilities here!) • Community representatives on global health initiatives e.g. GFATM, STBP, UNION etc. • International collaboration with International NGOs • Africa Union: Roadmap on Shared Responsibility and Global Solidarity for AIDS, TB and Malaria Response in Africa • SADC Declaration on TB in the Mining Sector • Other TB CSO groups globally

  5. Call to ACTION Our motto: “NOTHING FOR US, WITHOUT US” • We need new drugs NOW! FDCs/shorter regimens • Meaningful engagement - not just tokenism • Engagement at all levels • Timely feedback after trials or consultations • Better treatment of trial participants – ethics • Point of care tool – enable timely treatment • Eliminate regulatory testing/approval gap between rich countries and high burden countries where new TB drugs and regimens are most needed!

  6. Conclusion “As patients and patients representatives, we are no longer mere recipients of care but are now organised to take part in the management of our diseases therefore supporting and feeding into the work being carried out by other stakeholders at other levels”. The lives of the TB patients depends on our combined efforts. We want to be part of the change we want to see in the world – and together we can!

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