STRENGTHENING PLHIV NETWORKS FOR POLICY, ADVOCACY & STIGMA REDUCTION Dorothy Odhiambo, Wasuna Owino, Esther Gatua Mexico, August 7, 2008

PLHIV movement in Kenya is currently well defined with formation of national, professional and community networks of PLHIV. The networks play a major role in advocacy to enhance quality & effectiveness of HIV/AIDS responses; Ensure PLHIV are equal partners, active agents of change and not mere beneficiaries, target groups or Patients; Advocate for the promotion of GIPA principles, provide support to decrease isolation, and depression through valuable experience and knowledge sharing; Contribute to breaking fears and prejudices, stigma & discrimination 2. Introduction

3. Capacity Assessment Eight PLHIV networks were assessed using an adapted capacity assessment tool integrating the seven (7) McKinsey’s capacity assessment grid including: Organizational aspirations, Strategy, skills, Human Resource, Systems & Infrastructure, Organizational Structure, and Organizational Culture. Focus was put on the third element that assessed organizational skills: Local community presence, public relations& marketing, Influencing of policy making, Management of legal and liability matters, organizational processes, use & Development.

GRID COMPONENT/ ORGANIZATION ORG.1ORG.2ORG.3ORG.4ORG.5ORG.6ORG.7ORG.8 Local community Presence Public relations &Marketing Influencing of Policy Management of legal & Liability matters Organizational process & Development Average score Scores from 1-4 Score of 1= weak Score of 4= Robust, visible and active. 4. Organizational Skills

5. Emerging Gaps (Issues) Weak engagement by PLHIV in advocacy & policy dialogue & program implementation. Fragmented, poorly coordinated responses; Limited capacity for policy analysis & gaps; Weak institutional and organizational structures Insufficient attention to human resource, gender, poverty Weak community presence & ineffective leadership for community action Limited voices and engagement in national HIV policy making process, Poor management of legal and liability matters Weak organizational processes & Development

6. The Networks USAID Health Policy Initiative ( HPI) under Task Order 1, embarked on capacity strengthening program for six PLHIV networks: Network of People living with HIV in Kenya ( NEPHAK), Network of Disabled persons with HIV (UDPK), Network of religious leaders infected and affected by HIV (KENERELA+), Network of Teachers living with HIV ( KENEPOTE), Association of Muslim Women ( AMWOF/ASSALAAM), Kenya Treatment Access Movement ( KETAM)

7. Interventions Through local Network’s & support model, USAID/ HPI provided technical assistance to all the networks in: Institutional strengthening: resource mobilization &financial assistance through Sub-contracts; leadership and governance training, review and development of governance strategies such constitutions, Trainings and skills development in: policy and advocacy, networking and communication. Development of support groups, communication and disclosure skills, Treatment literacy, non- clinical palliative care;

8. Interventions (2) Psychosocial support and counseling skills for PLHIV and OVC, Financial management, human resource management &development of guidelines, strategies for network’s expansion, community mobilization for advocacy; conflict resolution and management. Development of GIPA mainstreaming Guidelines, HIV/AIDS programming: Project planning and implementation, policy development circle, advocacy process, prevention, treatment, care and support & community involvement & participation.

Improved visibility and engagement of PLHIV in national HIV policy and advocacy dialogue,& decision making fora such as: JAPR, NACC- ICC, CACCs & CCM, Increased drive and dynamism in PLHIV to contribute to implementation of the KNASP /10, and reporting on achievements Increased resources, leveraging of additional funds for network’s community activities GIPA Mainstreamed in national response & Involvement of PLHIV at most levels. 9. Outcomes

10. Stories from the Field

Establishment of new networks: network of positive health workers, network for Informal sector workers & Women of Faith addressing Gender Based Violence ( GBV), Access to services, including treatment by PLHIV- (treatment access- 190,000 on ARVS), Programs targeting vulnerable populations, care and support for OVC. Recognition of PLHIV groups by government & key stakeholders 11. Outcomes (2)

Using the Networks capacity assessment tool enabled focused capacity building for the networks. Building capacity of PLHIV networks enhanced engagement in HIV and AIDS policy and advocacy dialogue, Supporting PLHIV networks and support groups to advocate for rights contributed to reduction of stigma and discrimination especially within Health facilities Enhancing capacity of networks has enriched work in monitoring public HIV policies & accountability for GIPA, 12. Lessons Learned

13. Recommendations Build further capacities of PLHIV networks in adaptation of the capacity assessment tool to identify internal capacity gaps, Strengthen capacity monitoring, documentation, data collection, analysis and use in filling capacity gaps, Strengthen engagement and capacity in policy analysis and management, Develop skills to use the tool for effective advocacy, reporting and accountability.