For many people living with sickle cell disease, survival is no longer the only goal. The growing focus among clinicians and patient advocates is now shifting toward long-term management that allows patients to live healthier, more stable lives while reducing the frequency of painful crises and complications.

Sickle cell disease remains one of the most challenging inherited blood disorders affecting thousands of children and adults across Africa. The condition causes red blood cells to become abnormally shaped, blocking blood flow and triggering severe pain episodes, infections, stroke and organ damage. Experts say early diagnosis, consistent treatment and coordinated care are essential in improving outcomes for patients.

Speaking during a Sickle Cell Awareness Conference held at Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH), Dr. Brenda Misore, a paediatric haematologist and oncologist, noted that progress has been made in the management of the disease. She observed that more than a decade ago many of the same challenges dominated discussions around sickle cell care, but there have since been encouraging improvements in access to treatment and specialist services. However, she emphasized that strengthening early diagnosis and comprehensive clinical management remains critical in helping patients live longer and healthier lives.

At JOOTRH, clinicians highlighted apheresis, a procedure that replaces sickled red blood cells with healthy ones to reduce complications and painful crises. While not a cure, it improves patient stability and quality of life. However, the only current cure is bone marrow or stem cell transplantation, with gene therapy emerging as a promising future option to transform long-term outcomes for sickle cell warriors.

The hospital also conducts newborn screening, enabling clinicians to detect the disease early and initiate preventive care before severe complications develop.

According to Lilly Webala, CEO of Zuwi Afya CBO, while treatments such as apheresis are giving warriors renewed hope, many patients still face gaps in care. While access to services is improving, challenges such as limited awareness, delayed diagnosis and barriers to treatment still affect many patients. Speakers emphasized the need to strengthen screening, expand treatment options and improve patient support systems to close existing gaps and advance long-term management of sickle cell disease.

The conference brought together stakeholders, medical practitioners, caregivers and sickle cell warriors to discuss existing gaps in care and explore solutions.