KEMRI-Wellcome Trust Research Programme and Kilifi County Teaching and Referral Hospital, jointly manage the paediatric sickle cell clinic which serves neighbouring counties, provides diagnoses for children and routine management for patients. Their research is focused on improving the diagnosis and management of sickle cell disease and shaping the future of care and treatment for patients in Kenya and beyond.
Core aspects in the research focused on how sickle cell disease clinically presents in the patient population, evaluation of the effectiveness of treatments such as Hydroxyurea through clinical trials and safety and good usage of blood transfusion in the management of sickle cell anaemia. The clinical trials have demonstrated the safety and effectiveness of hydroxyurea in reducing pain events, infections, blood transfusions and death as well in improving overall survival rates. The evidence supporting the use of hydroxyurea has contributed to the development of the National Guidelines for the control and management of sickle cell disease in Kenya.
Findings from the research have established that early diagnosis combined with routine outpatient management—including vaccinations, iron supplementation, and infection prevention—significantly improve survival rates for children with sickle cell disease. This allows families to manage the condition more effectively leading to a growing number of adolescents and young adults benefiting from the clinic’s services.
Dr. Sophie Uyoga, Ag. Deputy Director at the Centre for Geographic Medicine Research Coast and Research Scientist at KWTRP said, ‘Early diagnosis enables the families to manage the condition adequately through simple measures like childhood vaccinations, prophylaxis for infections and early access to care when the children experience crisis.’
The continued success and growing public awareness and perception of the disease in the region improves both diagnosis rates and patient outcomes. This can be seen through the operation of the clinic for over 20 years and the growing number of adolescents and youth accessing clinical services serves as a testimony to the success in the management of the condition. There is also an increasing number of females having babies and children presented for diagnosis in their early years.
Despite these advancements, several challenges persist. Initially, stigma surrounding sickle cell disease hindered diagnosis acceptance among families. However, continuous education of the patients and their caregivers and intensive community engagement activities have helped in acceptance and demystifying the condition playing a pivotal role in overcoming this barrier.
Financial sustainability remains a challenge, as most research is grant-funded, and with most of the work centred on out-patient clinic visits, access to care is limited by an individual’s ability to afford out-of-pocket expenses for transportation, medications, and laboratory tests. One notable gap is the absence of a corresponding adult sickle cell treatment program, which the team is currently working to establish.
The research has already impacted healthcare policies locally, with evidence guiding the development of guidelines for management of sickle cell disease and the newborn screening protocols by Ministry of Health. The research team has strengthened collaborations with the hospital, local partners and research institutions in Uganda, enhancing the scope and impact of the sickle cell research.
Looking ahead, there are plans to focus on improving healthcare worker training to address service provision gaps and enhance the accessibility of care. Advances in treatment options, such as bone marrow transplants and precision medicine for hydroxyurea dosing, are anticipated to further revolutionize sickle cell management. Efforts to make treatments more affordable through the national health insurance scheme, Social Health Insurance Fund (SHIF) are also underway. Investigations on new methods to determine the correct hydroxyurea using precision medicine will decrease the number of blood tests currently needed.
KWTRP aims to advance the scientific understanding of sickle cell disease and drive tangible improvements in patient care and treatment policies, with the ongoing efforts promising to make a lasting impact on both the local and national levels.