From Evidence to Impact: Transforming Sickle Cell Care in Kenya

Sickle cell anaemia is a genetic condition that changes the shape and oxygen-carrying ability of red blood cells. Instead of being round and flexible, the red blood cells become sickle-shaped in small blood vessels, leading to blockages that cause complications often called ‘crises.’ During a crisis, patients usually feel severe pain (in the hands, feet, chest, back, or legs), jaundice, shortness of breath, and fatigue. In boys, priapism can also happen.

Individuals with sickle cell anaemia inherit two copies of the HbS gene (one from each parent), which causes red blood cells to become sickle-shaped. Carriers, who have only one copy of the HbS gene (sickle cell trait) inherited from either parent, are less susceptible to getting severe malaria. This protective effect made them better survivors in malaria-endemic regions, leading to higher gene transmission across generations, often without carriers being aware they carried it. In Kenya, sickle cell anaemia is highly prevalent in the coastal and lake regions, which historically experienced high malaria transmission.

The ongoing research is driven by the need to improve access to diagnostics and to generate evidence on the pathology and epidemiology of sickle cell disease in our setting. The sickle cell clinic has been operational for over 20 years, during which we have witnessed significant improvements in the survival of individuals with sickle cell anaemia. Today, we have a growing cohort of adults living with sickle cell anaemia, many with families of their own, serving as an encouraging marker of progress. Caregivers and adult patients have also established support groups, which play a crucial role in strengthening the provision of psychosocial support for individuals with sickle cell disease and their families.

The KEMRI-Wellcome Research Programme works closely with the Kilifi County Department of Health and the Kilifi County Referral Hospital administration, which has enabled the establishment of the adult sickle cell clinic. Together with colleagues at KCRH, the Programme also supports neighbouring counties through team training and sharing experiences. With the support of the Africa Sickle Cell Organization, we look forward to expanding capacity-building engagement efforts across the region.

Over the years, we have generated evidence on the importance of patient care, which has informed sickle cell management guidelines and attracted partners now supporting service delivery. The Ministry of Health’s rollout of the newborn screening programme is another major milestone, as it will greatly strengthen early diagnosis and the subsequent management of patients.

As a team, our mission is to enable sickle cell warriors to live a full and fulfilling life.

As we celebrate WSCD, let’s all become advocates of our bold heroes. It’s as easy as becoming a regular blood donor. To all the sickle cell warriors, I salute you.

World Sickle Cell Month 2025 “Tell it Loud – Share, Celebrate, Advocate”.