Building a Strong Hepatitis Patient Group Network in Nigeria Danjuma K. Adda Executive Director CFID Taraba National Coordinator Civil Society Network on Hepatitis Nigeria Member C20 Global Health Working Group

Presentation Outline At the end of this session, participants should be able to understand best practices in building a strong Network of Patient Groups

Viral hepatitis is a major underserved public health issue in Africa, with more than 60 million people HBV infected across the continent. Low awareness on viral hepatitis among: Policy makers, Health providers The general public Poor governments commitment Due to poverty, poor access to diagnostics prevention Treatment Medicines Introduction

Viral Hepatitis in Nigeria Population of over 175 million people, over 300 different ethnic groups. HBV Burden in Nigeria Prevalence Hepatitis B -11% Hepatitis C- 2.2% VH awareness is low Weak health systems, high cost of diagnostics & treatment Implying that over 20 million Nigerians are living with viral hepatitis

Patient Voice in Advocacy Strong patient advocacy is critical Partnership holds the key to success in Africa

Collaboration among advocacy groups in Nigeria Until 6 years ago, we had NO VOICE in Nigeria Since 2012, advocacy groups identified and formed a united network The advocacy groups identified the need to: To engage the governments at all levels: Local, state and Federal govt. Engage the Clinicians-Gastros Engage the private sector Engage community groups and associations Engage ourselves Managing diverse interests and hopes is quite challenging

Set up our Key Objectives as a group To provide a platform for Patient Groups/NGOs to share experience and dialogue for concerted actions to promote hepatitis awareness, prevention and Treatment in Nigeria, especially at the community level. To increase the voice of Patients concerns and the visibility to the ongoing national and global effort to eliminate hepatitis in Nigeria To enhance knowledge transfer from local to global levels, and vice-versa, in order to build the resilience of communities and affected populations in Nigeria

Patient Groups involvement in TWG The Federal government of Nigeria set up the Technical Working Group (TWG) on Viral hepatitis control in 2013, without the patient group representation Patient Groups were then involved after we had formed our network and engaged the government. Till date the Civil Society Network is involved in all Hepatitis related decisions in Nigeria and development of all tools, policies, protocols and manuals-with Patient groups roles clearly defined

Principles guiding Our Network in Nigeria Understand our diversity Build Trust: interpersonal, inter-institutional, cross cultural, across religious divides. Transparency is the basis of true partnership. Declare your interests Accountability Open communication Delegation of responsibilities Principles guiding Our Network in Nigeria

Sources of Conflicts in our Network Value disagreements. Personality conflicts. Communication misunderstandings. Doubts about priority need for partnership. Confusion over differing degrees of members’ autonomy. Different power interests. Sources of Conflicts in our Network

Partnership holds the key to success in Africa Take Home Messages Time Time Counts Find Find a Mutual Connection Create Create a Robust Network Be Be Specific Be Diverse Stay in Stay in Touch and Give Back Partnership holds the key to success in Africa

References Nigeria: Epidemiology Division FMOH 2013 WHO, 2015:GHSS EASL/WHA Joint Workshop: Barcelona 2016 FMOH, Nigeria: NASCP 2016