Closing RemarksCPTR 2012 WORKSHOP

Carol Nawina Nyirenda – Patient Advocate

Executive DirectorCommunity Initiative for TB, HIV/AIDS & Malaria (CITAM+),

Lusaka, Zambia

What CPTR means to affected communities

CPTR MissionAccelerate 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 and

Stakeholder 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

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

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

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!

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!