ECEPAS- Ethics Community Engagement and Patient Advocacy and Support

Background

The Global Emerging Pathogens Treatment Consortium (GET) is made up of African experts who assembled in the wake of the ebola epidemic. The consortium collaborated with partners from the United States, Europe and Asia. The first objective was to assess the efficacy of Ebola Immune Plasma or Globulin in acute Ebola Virus Disease (EVD) in the 2014 Ebola Zaire (EBOZ) West African outbreak. There is no known cure for Ebola, however there is convincing evidence, that the disease can be prevented, and its severity curtailed by the use of plasma from survivors. The African-led effort was comprised of experts in the fields of Infectious diseases, various subspecialties of pathology, haematology, blood transfusion, physicians, bioinformatics, biobanking, ethics, social science, community engagement, patient advocates, logistics, engineers and government administrators. The consortium worked rapidly to organize and establish a plasmapheresis and plasma processing and storage facility in West Africa and to conduct clinical trials to assess efficacy.

Conducting these studies raised with it, along with others, important ethical issues that bordered around the conduct of such trials including the potential inherent risks that accompanied the use of plasma from EVD survivors; the ethics concerns around collecting plasma from EVD patients that had recently recovered from a seriously debilitating infection; storage, use and sharing of samples and data; as well as post-trial access issues amongst others. It was considered expedient that within its structure, the GET Consortium considered and addressed these issues, while facilitating the advancement of science in the process.

The GET Consortium: Community Engagement and Patient Advocacy and Support Working Group (ECEPAS) 

Accordingly, the GET Consortium established an Ethics Community Engagement and Patient Advocacy and Support Working Group (ECEPAS) to initially review the protocol for convalescent plasma. Then to  improve public confidence and satisfaction in the conduct of the GET-Ebola Response Mechanism (GERM) Operations and services through effective dialogue with local people who live, work and visit West Africa (namely Liberia, Sierra Leone and Guinea- Conakry); discouragement or prevention of stigmatization against health workers and Ebola survivors; the enhancement of GERM’s role in partnership working whilst ensuring effective partnership structures within the consortium and with other interlocutors in the health delivery  system.

The work group was initially comprised of key influencers, politicians, social-scientists, communicators, community leaders, traditional medicine practitioners and language specialists’ experts based or from within and without the region concerned. The work group, with  support from the parent body, secured funding to perform its community engagement activities including advocacy and publications. Currently, post  outbreak, the working group’s core members are listed below.

ECEPAS Work Group Members 

Dr. Muhammed Afolabi (Co-Chair)

Mr. Korlia Bonarwolo

Dr. Sina Fagbenro-Byron

Prof Ayodele Jegede

Mr. Francis Kombe (Chair)

Dr. Gibril Ndow

Prof Innocent Ujah

Ms. Jennyfer Ambe (Secretary)

ECEPAS Publications

Kombe, F., Ambe, J., Ndow, G., Bonarwolo, K., (2019). Scientific Response to Deadly

Novel  Epidemics: The Role of Good Clinical Practise.Socio-cultural dimensions of        

           emerging infectious diseases in Africa: An indigenous response to deadly

            epidemics.Tangwa, G., Abayomi, A., Ujewe, S., & Munung, N., ch.15, Springer

International. ISBN 978-3-030-17473-6

Kombe, F., Ambe, J., Ndow, G., Bonarwolo, K., (2019). Scientific Response to Deadly

Novel Epidemics: The Role of Health Research Ethics.Socio-cultural dimensions of      

            emerging infectious  diseases in Africa: An indigenous response to deadly    epidemics.Tangwa, G., Abayomi, A., Ujewe, S., & Munung, N., ch.16, Springer

International. ISBN 978-3-03 17473-6

Folayan, M., Ambe, J., Kombe, F., & Ethics, Community Engagement, Patient Advocacy

Working Group (ECEPAS) GET Consortium. (2018) Research in global health

emergencies: Evidence based  bioethics. (Accepted for publication). Nuffield Council of

Bioethics, UK.

Kombe, F., Folayan, M., Ambe, J., Igonoh, A., and Abayomi, A. (2015). Taking the Bull by the

Horns:  Ethical Considerations in the Design and Implementation of an Ebola

Virus Therapy. Social  Science and Medicine. DOI: 10.1016/j.socscimed.2015.11.017

 

Contact email for ECEPAS:  ecepas.theget@gmail.com

Contact Phone #: (1 888 871 6149)

Statement In addition, a statement on gene editing was released on December 2, 2018 by the work group.

Download Resource

ECEPAS- Africa Statement on Human Germline Genetic Editing_Dec 2 2018_FInal