1. 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

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

3. 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

4. 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

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

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

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