Christopher, M; Wanjiku; Njuguna, Festus
(GLOBAL CAPACITY-BUILDING SHOWCASE Establishing care for sickle cell disease in western Kenya: achievements and challenges Christopher M. Wanjiku,1 Festus Njuguna,1,2 F. Chite Asirwa,1-3 Samuel Mbunya,1 Cyrus Githinji,1 Christopher Roberson,4 and Anne Greist4,5 1AMPATH Haematology and Oncology Institute/Moi Teaching and Referral Hospital, Eldoret, Kenya; 2Moi University School of Medicine, Faculty of Health Sciences, Eldoret, Kenya; 3International Cancer Institute, Eldoret, Kenya; 4Indiana Hemophilia and Thrombosis Center, Indianapolis, IN; and 5Indiana University School of Medicine, Indianapolis, IN Introduction Sickle cell disease (SCD) is the most common hemoglobinopathy encountered in Kenya. In the western part of the country, about 4.5% of children are born with SCD, and 18% of children are born with sickle cell trait. SCD has contributed significantly to the mortality rate in children younger than age 5 years, primarily because of late diagnosis, educational gaps among service providers, and lack of access to appropriate treatment. Academic Model Providing Access to Healthcare (AMPATH) is part of a collaboration between Moi Teaching and Referral Hospital, Moi University, and Indiana University (including the Indiana Hemophilia and Thrombosis Center). Moi Teaching and Referral Hospital, which operates primarily in the western part of Kenya, has been at the forefront of solving the problem of SCD by partnering with local authorities to help improve comprehensive care for patients with SCD. Objectives cTo improve diagnosis of SCD, cTo train clinicians and other health care providers in managing patients with SCD, cTo improve access to treatment for people living with SCD, and cTo create partnerships with stakeholders involved in caring for people living with SCD. Methods Between 2012 and 2019, AMPATH helped start a comprehensive sickle cell care program that was gradually extended to eight other counties in the western part of the country. The five main pillars of the expansion were: 1. Training and mentoring clinicians in the satellite facilities (Figure 1), 2. Holding meetings with local authorities to communicate the needs of people with SCD, 3. Educating patients and families about the importance of timely diagnosis and treatment, 4. Forming patient support groups for advocacy and facilitating regular meetings twice every year (Figure 2), and 5. Providing affordable diagnostic services and treatment by setting up a revolving fund and partnering with donors. Results cMore than 25 000 children were screened for SCD using isoelectric focusing, and of those found to have SCD, approximately 75% have been successfully contacted and started on treatment. cAt this time, 1559 clinicians and other health care providers have been trained on how to manage SCD (Table 1). cCounty authorities have worked together with advocacy groups as well as clinicians in an effort to improve access to care and close gaps in knowledge within communities (Figure 3). 8 GLOBAL CAPACITY-BUILDING SHOWCASE, 2019)
Introduction
Sickle cell disease (SCD) is the most common hemoglobinopathy encountered in Kenya. In the western part of the country, about 4.5% of children are born with SCD, and 18% of children are born with sickle ...