Importance of Capacity Building and Empowering the TB, TB/HIV Community Activists By Francis George Apina NETMA+ KENYA Stop TB Partner’s forum Rio de Janeiro 24 th March 2009

Rationale for Community Activist empowerment The Global Stop TB Strategy agenda number 5 emphasised on The Global Stop TB Strategy agenda number 5 emphasised on Engaging people with TB and affected communities as a vehicle for delivering: Engaging people with TB and affected communities as a vehicle for delivering:  Community participation in TB Care  Advocacy, communication and social mobilization (ACSM)

Rationale Cont…  The empowerment of the community has been codified as a key component of TB control strategies, yet the full scope of this element of the strategy is yet to be fully and well defined.  To a greater extent the community also have their own interest which should not be ignored if you want to do business with them

Why Capacity Building for TB, TB/HIV Community activists? Why Capacity Building for TB, TB/HIV Community activists?  Its critical that Activist posses the necessary competence, skills, knowledge and right attitude for them to be effective in their participation in lobbing and advocating for desired change in the society.  Its difficult dealing with bureaucratic systems that characterize the running of most Government systems particularly in Africa and developing countries, who are disproportionately carrying the greatest burden of TB and HIV than the rest of the World.

Why capacity Cont…  Capacity building and empowerment plays an important role in shaping up and sharpening the activists for daunting job of advocating for the rights of the marginalized and vulnerable groups in the society.  Some of as are products of such empowerment, (MSF-Belgium invested in me in 2004 in a treatment literacy workshop that totally changed my destiny).

Why capacity cont…  As the community’s watchdog the activists, should have special capabilities of monitoring National TB and HIV programs with a view of making then more responsive to the community health needs.

Why capacity Cont…  Effective activism should be based on facts not opinions, Research or evidence based advocacy is critical tool should motivate the activist response to a health phenomena, based on this its imperative that the TB, TB/HIV activists understands fundamentals of research process and their findings as a key informant of the advocacy planning and processes, including monitoring and evaluation of the outcomes.

Why capacity Cont…  Activists as community educators, leaders and informers, they are the key component in health system response at the community level, the effectiveness of their input is subject to the level of information, knowledge, attitude and understanding of key variables that affects the community.

After building our capacity what can we bring to the table?  Demanding Accountability from “high level” leadership: Moving from Rhetoric to Action and developing TB/HIV Score Cards in our countries.  Engagement in policy processes such as CCMs, UNITAID and Global Fund Board.  Collaborate with other whistle blowers :e.g. Media to place such findings in the ‘public domain’.

Why we need it  Advocacy/Lobbing in:  Demanding for increased allocation of resources for TB/HIV through International Funding Mechanisms such as the Global Fund, PEPFAR, Multilaterals (World Bank), etc  Utilizing evidence based data from research to demand for investment in better care and interventions  Building Community Support for TB/HIV care  CSOs/Activists groups bridging the ‘health workers crisis by actively engaging in :  Home based Care  Treatment literacy activities  Adherence Counseling/Support  TB Case detection and defaulter tracing  Continual Psychosocial Support among others.

Cont… Reminding leadership of ‘failed promises” & demanding urgent action  2001 : Abuja Declaration – 15 percent budgetary allocation to HIV/AIDS, TB and Malaria  Maputo Declaration : African Health Ministers Declaration of TB as an Emergency  UNGASS Declaration  G8 commitments to Universal Access:  Where is the $60bn budget deficit?

ICW-EA and TAG TB Project. Success  Network of Men Living with HIV/AIDS in Kenya (NETMA+) and other CSOs in Africa is working in collaboration with ICW-EA/TAG TB/HIV project in redefining our organization’s TB, TB/HIV advocacy agenda for  This documents will be the road map that will navigate the TB, TB/HIV activities in our organizations for up to five years.  The partnership has added a lot of impetus in creating a deeper understanding of TB/HIV Collaborative policy and the 3 Is initiative of reducing TB burden in PLHIV community.

Lessons Learnt  Scientific based advocacy is a powerful form of advocacy, it brings out the validity and reliability of the cause for our persistent demand for logical dialog with key stakeholders.  Our unity is our strength, if we put our voices together as members of TB, TB/HIV community with shared values and demands, then our voices will be head beyond our borders.  If the community are empowered their roles changes to partners from being patients or clients.

Opportunity for NETMA+ Opportunity for NETMA+  The developed TB, TB/HIV advocacy work plan has proposed annual budget of USD 50,000 per district and we are targeting to work in 10 most effected Districts in Kenya in the next 5 years  We believe that this document and skills acquired from the ICW/TEG workshop will assist us in identification of partners who will support the budget deficit in our TB advocacy plan.  We are able to expand our networking and collaboration with other activists in Africa and beyond, share experience and replicate the best practices.

Recommendations  If the Global Stop TB strategy dream of a world free of TB by 2050 is to be attained then, community empowerment must addressed with equal strength.  What is required is a more innovative approach to building capacity of the TB, TB/HIV activists through Strategic and Sustainable Involvement and Investment in People living with TB, TB/HIV (SSIIP).  This approach will ensure that the TB, TB/HIV community activists empowerment programs occupies a significant space in the partners top funding priorities.

Parting shot  We innovate or we evaporate! Thank you for listening to me