Building a Comprehensive Sickle Cell Disease Program in Western Kenya: A Decade of Experience and Growth

Lack of sufficient education, training, and capacity to care for people with SCD

Limitations of the in‑person conference style model, the long‑term learning and engagement was ultimately limited, and without continuous learning opportunities, much of the knowledge gained was lost

Training and stakeholder engagement to increase the level of commitment

Identifying local facilitators/champions at various hospitals/clinics to continue with local training/education

Regular virtual training and case‑based discussions using the ECHO platform

Sites relied heavily on the program for medications and diagnostic supplies

Unavailability of reasonably priced medications

Low overall demand for Hydroxyurea in many SSA countries

Expensive laboratory tests for confirmation of diagnosis

Establishment of revolving fund pharmacies

Lobbying the drug distributors to reduce cost of medication

Lobbying the government for inclusion of SCD medication into an SCD care package under the national public health insurance scheme

Utilization of courier services to transport samples where confirmatory hemoglobin electrophoresis testing was required

Use of point of care testing

Inability to conduct/participate in research and publish

Training the staff in research/writing skills

Having dedicated time to conduct research

Writing grants to provide staff who can focus on research

Lack of technical skills by parents/caregivers on advocacy

Low prioritization of SCD by government

Training of persons living with SCD/caregivers on advocacy

Identification and engagement of key government officials and other stakeholders on SCD