WFH NETWORK

Experience of the WFH twinning between Abidjan and Brussels

The World Federation of Hemophilia (WFH) Twinning Program improves care for people with bleeding disorders in emerging countries through a formal, two-way partnership between two hemophilia treatment centres, patient organizations, and youth groups. The WFH recently announced the Twins of the Year Award recipients, and the 2018 Hemophilia Treatment Centre (HTC) Twins of the year are Abidjan, Côte d’Ivoire (Ivory Coast) – Brussels, Belgium. In this article, Catherine Lambert, MD—Clinical Hematologist in the Division of Adult Hematology, Hemostasis and Thrombosis Unit at the Cliniques universitaires Saint-Luc in Brussels, Belgium—shares her experiences of being part of the HTC Twins of the year.

The story began in 2013 with the fellowship of a young Ivoirian hematologist, Meité N’Dogomo, MD, from the University Hospital of Yopougon, Côte d’Ivoire, at the International Hemophilia Training Centre (IHTC) of the Cliniques universitaires Saint-Luc in Brussels, Belgium. His motivation and enthusiasm were the major factors that initiated the twinning partnership between the HTCs of Abidjan and Brussels. But what definitively convinced us to embark on the adventure was the pre-twinning assessment visit in Abidjan, during which we met young boys with hemophilia affected with severe arthropathy—similar to the condition some Belgian people with hemophilia (PWH) aged 50 years and over have. This showed us the lack of access to replacement therapy in Côte d’Ivoire. A solid and dynamic multidisciplinary Belgian team (two hematologists, one physiotherapist, and a member of the hemostasis laboratory) was set up, and the twinning between Brussels and Abidjan officially started in October, 2014.

The first on-site mission allowed us to ascertain the magnitude of work to be done and the need for starting with the basics: education, screening and prevention among PWH and carriers. We were impressed by parents who travelled the entire country to obtain an infusion of clotting factor concentrates for their children, by mothers who carried the burden of their own carriership and the disease of their children, and the courage of some PWH who, despite their disability, carried out heavy physical activities. We sadly learned of the catastrophic stories of families devastated by the death of several children, especially after a circumcision.

Through a dynamic partnership, open mindedness and a lot of energy, many actions were carried out through the twinning partnership—the common thread being to identify solutions adapted to local economic constraints and the socio-cultural situation, and, to improve, over the long-term, hemophilia care in the Côte d’Ivoire. We also wish to highlight the close collaboration we had with the Ivoirian national member organization (NMO) that actively contributed to the success of the project.

Important actions were accomplished at the HTC of Yopougon during the four years of the twinning partnership: a hemophilia registry was set up and the centre joined the WFH World Bleeding Disorders Registry (WBDR); multidisciplinary assessments of PWHs and carriers were regularly performed; locally-adapted educational material and a self-physiotherapy program were developed; health-related quality of life measurement instruments were adapted to Ivoirian PWH; a low-dose prophylaxis program was initiated in young children; and invasive procedures such as circumcision and synoviorthesis were performed.

In addition to the funding received for the Twinning Program by Pfizer, we were also pleased to receive donations from other charitable organizations for our twinning partnership.

We believe that the Abidjan – Brussels twinning partnership was an extraordinary and enriching experience for both teams. Our collaboration will not end now, as many projects are still ongoing. For example, we have several scientific publications in the works, as well as an application for a HOT twinning with the Ivorian NMO that will be submitted this year.

The Twinning program is supported by exclusive funding from Pfizer.