Kisumu: Sickle cell disease (SCD) is a group of inherited blood disorders that cause red blood cells to become hard, sticky, and crescent-shaped. Instead of flowing smoothly, these abnormal cells block blood vessels, which restricts oxygen delivery and leads to severe pain, tissue damage, and chronic anemia. Treatment for the disease focuses on managing pain, preventing complications, and curing the underlying genetic condition. The therapy involves daily medications like hydroxyurea, blood transfusions, supportive lifestyle care, and curative options like stem cell transplants and emerging gene therapies.
According to Kenya News Agency, sickle cell disease (SCD) affects an estimated 14,000 newborns annually in Kenya. The overall national prevalence of SCD is approximately 0.9 percent, but the trait (SCT) reaches 10 percent to 40 percent in high malaria-endemic areas like the Coast, Western, and Nyanza regions. Without early screening, 50 to 90 percent of these children do not survive past age five years. Data shows roughly 21 percent of children in Kisumu carry the sickle cell trait, and approximately 4.5 percent are born with the disease. Experts say it is highly prevalent in the county because the trait provides natural protection against severe malaria, which is endemic in the region.
This makes the Lake Region, particularly Kisumu, have the highest prevalence of Sickle Cell Disease (SCD) in Kenya. Because of this, some County health facilities such as Jaramogi Odinga Oginga Teaching and Referral Hospital (JOOTRH) and Pap Onditi in Nyakach have rolled out newborn screening and ultra-modern testing technologies to detect the disease early. Local management programs focus on the distribution of Hydroxyurea drug to the patients, community health promoter training, and regular blood transfusions in order to save lives.
For thousands of Kenyan families, sickle cell disease is more than a medical condition. It is a daily fight against pain, stigma, poverty, and limited healthcare access. The SCD treatments in the county are supported under the essential drugs list. To access continuous care and medication, patients must ensure their Social Health Insurance Fund (SHIF) contributions are up to date.
Jaramogi Oginga Odinga Training and Referral Hospital (JOOTRH) in March this year set up the JOOTRH Victoria Annex to improve cancer treatment and management in the region. This facility is a dedicated facility equipped for comprehensive care, research, surgeries, and bone marrow transplants to support cancer treatment, especially in sickle cell patients. The Victoria Annex Hospital is a specialized Level 4 public health facility in Kisumu, located near Jamhuri Park. It operates as a dedicated Sickle Cell Disease Management Centre and surgical hub, offering advanced treatments like automated red blood cell exchange for the wider Western Kenya region.
In March this year, the county unveiled the Chung Jeong-Eun-Nyong’o Cancer Centre, a flagship project under the Africa Smart Cities and Townships Alliance (ASCA), which is set to position the city as a regional hub for comprehensive cancer care in future. The programme is being implemented through partnerships with the Africa Cancer Foundation and the Cheon Jeong-Eun Future Foundation and will include the installation of modern diagnostic equipment, as well as intensive training for healthcare workers and engineers to build sustainable local capacity.
As a branch of JOOTRH, Victoria Annex was set up to help with handling Sickle Cell, HIV, and specialized surgery for patients who required instant medical attention but could not manage that from the main hospital due to overstretching and lack of a special wing to handle sickle cell cases, therefore acting as a solution to curb overstretching in the main hospital. The hospital boasts a Sickle cell clinic, HIV clinic, and specialized surgery wing that are well-equipped and up for the task.
It offers outpatient and inpatient health care to about 70-100 patients a day, but the number could go up to 150 patients on major clinic days, which are Monday and Wednesday. The main idea is to provide them with specialized care because of the complexity of their disease. Resident physician, Dr. Julie Awuor, explains that it is very important for clients to be followed up through the clinics. There is also an exchange program for regular blood cells, where cancer patients can receive specialized internal care.
She emphasizes that patients with sickle cell disease, especially those who frequently go into crisis, require specialized care at particular times. Victoria Annex provides such care by following up with patients consistently monthly or every three months depending on their condition. They give them clinic dates ranging between one and three months because there can be variations in how stable different patients are, keeping their contacts and reminding them whenever their clinic date is due.
Dr. Awuor notes that patients with sickle cell disease can deteriorate very rapidly. Someone may appear completely fine, but by the next minute, their hemoglobin levels may have dropped dangerously low. This can lead to sudden collapse or even death, highlighting the importance of close monitoring, timely reviews, and continuous support to improve their quality of life and survival. This dedication has ensured timely monitoring and treatment of sickle cell-related complications, thereby reducing mortality among the patients.
The hospital operates in a very special manner with direct and immediate stabilization of emergency cases. When a patient arrives and is not stable, they are admitted immediately and stabilized before treatment can begin. Dr. Awuor expresses her satisfaction when a patient comes out of a crisis, health improves, and they return to a near-normal life.
In many rural communities, awareness remains low, and myths still surround the condition. Patients and advocates have continued to petition the government to classify sickle cell disease as a critical illness under Kenya’s Social Health Authority (SHA), arguing that many families cannot afford lifesaving procedures, medication, and regular blood transfusions. The Ministry of Health, together with partners including the Sickle Cell Federation of Kenya and AMPATH, has expanded newborn screening programs in high-risk counties.
Kenya has also launched the ‘Afya Dhabiti Project,’ aimed at improving diagnosis, training healthcare workers, and lowering the cost of treatment. In Kisumu, over 40,000 newborns have already been screened as part of county-led interventions targeting early diagnosis. Health experts emphasize that awareness is key, urging Kenyans to know their genotype or carrier status to prevent two carriers from unknowingly having children with the disease.
