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TB and Communities

WHY? WHO? WHAT? HOW?

Gracia Violeta Ross graciavioleta@gmail.com
Community Representative TB-HIV Core Working Group, Stop TB Partnership

These pages are inspired in the World Health Organization Expert Consultation meeting to develop Operational Guidance for TB Community Care and Civil Society Engagement in Tuberculosis prevention, diagnosis and care (Geneva, September 20-21th, 2011). Some of these comments were inspired in the interventions of participants in the meeting, especially Haileyesus Getanhun, Darcy Richardson and Rafael Lopez. As a participant in the meeting, I seek to organize my own understanding of the draft document and perhaps help other to do the same. This document does not represent the voice of any stakeholder, it only represent my own thinking and reflections while the meeting is happening.

1. WHY?
(Why do we need communities in the TB response?) TB is already in the communities but as a disease and a risk factor for mortality, not as a space for empowerment and collaboration. Communities have abilities to reach out and mobilize demand, but our role has not being widely acknowledged and supported. We need many more stakeholders to see at communities beyond the patient role. We can help in the understanding of TB beyond a microscope; we know the social fabric that creates the vulnerability for TB and risk and TB mortality.

2. WHO?
(Who are the communities?)

2 We can use a lot of time defining who the communities members are, that exercise might not be so useful, because the definition and composition of communities varies from one culture to other. The most important characteristics to remember are: communities are not voiceless or powerless. Communities have local knowledge which as valid as the knowledge of the scientist and donors. Communities are dynamic. Communities are autonomous and need to remain so, because our expertise and role will be strengthened, precisely because our ability to remain independent of official structures. This does not mean that we will have different plans than those of the governments and other stake holders, nor does it mean we dont want to collaborate and coordinate; it means that in any partnership, the identity of each stakeholder has to be respected.

3. WHAT?
(What do we mean by with engagement and community based interventions on TB?) With engagement, I believe we mean meaningful participation of community members in the planning, implementation, evaluation and monitoring of the TB response. The engagement of communities, could mean as well the creation, inspiration and nurturing of a wider civil society movement that considers TB as a global health priority in a consistent way. This involvement should not be tokenistic or controlled but based on commitment and practical support, we cant do more with only the conviction, in many cases we will need money and other resources to implement activities. Community based interventions could mean programs lead by community entities; those should not only achieve the clinical aspects of TB but also activities related to advocacy and accountability. Personally I believe communities can bring light on the understanding of TB vulnerability and the intersectionality of some of the dimensions of TB vulnerability, because we know experiences such as that of a person who uses drug inside a prison, living with HIV in Eastern Europe countries; that is an example of the intersectionality and the expertise we bring to the table. For some of us the concept of risk, limits the understanding of why some people get infected, develop the disease and after die and why others dont. Risk refers to a calculated, often conscious action that may have a negative outcome. More of the TB risk factors are actually dimensions of vulnerability; for example, being HIV positive, being pregnant, having diabetes, being poor or surviving with malnutrition, has more of vulnerability than of risk. While on the other hand, smoking is more of a risk factor.

4. HOW?
(How are we going to do this?)

3 There are many planning schemes that could be used for joint TB activities, one that many people could understand may look like the following graphic:

Re-asses and star all over

Analyze

Evaluate

Plan

Implement
The how should not only tell us about planning models, but also principles and values of the partnership that we are intending to work on. For me, a partnership between communities and National TB Programs should be a table of equals more than a broken leg table in which the balance is uneven. An ideal partnership: o o o o o o does not have a boss, but a leader does not have control but monitoring and evaluating agreed indicators it values diversity by recognizing the identities and roles of each one of the partners while keeps a unified goal does not impose roles but acknowledges the abilities of each member following their own assessment does not have a vertical, paternalistic approach

These are some suggestions of values and principles a partnership could be based on: Equity Respect Collaboration Participation Representation

4 Empowerment Accountability Free will Autonomy Commitment In order to summarize the above discussion, I developed the following map, if it is useful, readers might use it. Ideal Partnerships for the TB response

NATION AL TB PROGRA MS COMMUNITIES UN Dynamic, evolving, dialectic change according to the need of TB epidemic DONNORS SCIENCE H E A L T H S Y S T E M S