Patient and Community involvement in TB control – Approaches and Challenges in reaching the poor Presented by Pervaiz Tufail Ted Torfoss

TB - Is a Poverty Disease - Poverty and health in resource constraint countries - Can be addressed through community contribution and affected people - Through livelihood, Human Resource and NTP

How to address TB? Right Person for the right job Right Person for the right job Listen, share and acknowledge Listen, share and acknowledge Rights Based Approach Rights Based Approach People affected with TB as solution, not as a problem People affected with TB as solution, not as a problem Grass root ownership Grass root ownership Livelihood, poverty and income generation Livelihood, poverty and income generation

3 Levels of commitment People Infected with TB Public Private PartnershipFamilies Service provider, Livelihood and Income Generation

3 levels of Partnership 1. Infected people, their families and communities 2. Livelihood, income generation, chamber of commerce and job providing agencies 3. Service Providers, NTP and NACP collaboration

Approaches to address TB and Poverty - Grass root approach - Peer Education Approach - Networking and collaboration-TB affected people, HIV, NTP/NACP - Public/Private Partnership - Livelihood, income generation and empowerment of TB affected people

TB and Poverty Reduction Approach - Poverty reduction and TB-affect and impact - Attitudinal and behaviour change- affect and impact on TB control and spread - Gender, economy and TB - Access to service, NTP, community relations - Livelihood, income generation and job provision

People living and affected with TB Are NOT Part of Problem They are Part of Solution

The right to participation “…the right of individuals and groups to participate in decision-making processes, which may affect their development, must be an integral component of any policy,, programme or strategy developed to discharge governmental obligations under the right to health.” (General comment on the right to health, ICESCR)

Why empower and involve the patients/former patients? Ethical Ethical Increased adherence Increased adherence Good TB advocates Good TB advocates Increased awareness Increased awareness Link to the community Link to the community Reduce stigma Reduce stigma

Empower and involve the patient in the management of their disease.  Respect and dignity - listen to the patient  Appropriate information  Give the patient options and responsibility on how to adhere to treatment -Need for care and support  Capacity building among HWs - Patient Centred Approach (ISTC) and TB Patient Charter can be tools

Empower and involve patients/former patients in TB control on the ground  Identify and motivate individuals, acknowledge their experience and empower them with knowledge about TB  Peer work, support groups, TB clubs  Treatment supporters  Bridge to the community, awareness  Community health/TB educators  Cured patients as TB advocates

Empower and involve patients/former patients to play a role where TB strategies and decisions are discussed  Acknowledge their experience and knowledge  Create an environment for capacity building and participation  Support for nurturing of TB patient organisations and networks  Need for spokespersons

Impact on reaching the poor!? Increased knowledge in communities on TB and available services Increased knowledge in communities on TB and available services Make the health services more responsive to the patients needs Make the health services more responsive to the patients needs Strengthen the link between health services and communities Strengthen the link between health services and communities Reduce stigma Reduce stigma Make the voiceless have a voice Make the voiceless have a voice Be watchdogs - keep NTPs/health services accountable Be watchdogs - keep NTPs/health services accountable

What terminology should we use? Patients/former patients Patients/former patients People with TB People with TB Affected community Affected community Infected community Infected community Community Community Target group: People with an “ownership” to TB Target group: People with an “ownership” to TB