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
