For decades, sickle cell disease (SCD) has remained one of Kenya’s most overlooked non-communicable conditions, silently taking the lives of thousands of children before they turn five and leaving many survivors to face repeated pain episodes, disability and poverty.
In Kisumu County, however, an ambitious public health approach is taking shape, bringing together science, policy, technology and community outreach to reshape the future for people living with sickle cell disease.
That shift was evident during the World Sickle Cell Day commemoration at Katito Sub-County Hospital, where health leaders, policymakers, clinicians, patients and caregivers came together to review progress and plan for a future in which sickle cell disease is no longer treated as a death sentence.
Delivering remarks on behalf of Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH) Chief Executive Officer Dr. Joshua Okise, Dr. Brenda Misore, Consultant Paediatric Haematologist and Oncologist at JOOTRH, recalled a time when patients reached hospital unsure whether they would see another day, contrasting it with a period when advanced treatment is increasingly available through the public health system.
Dr. Misore said the message was one of hope, stressing that no child, parent or individual should feel that the future is beyond reach.
The remarks also honoured the late Dr. George Rae, remembered as one of the region’s strongest advocates for sickle cell care and the driving force behind the “Sickle Cell Zero” vision that continues to shape health interventions in the area.
The hidden burden of sickle cell disease
Sickle cell disease remains a major global public health concern, affecting an estimated 20 million people worldwide, with sub-Saharan Africa bearing the greatest burden.
In Kenya, about 14,000 children are born with sickle cell disease each year, placing the country among Africa’s highest-burden nations. Western Kenya, including Kisumu County, is one of the most affected regions because the sickle cell trait is highly prevalent in the population.
Health experts estimate that nearly one in every five people in parts of Western Kenya carries the sickle cell trait. When two carriers have a child, there is a 25 percent chance with each pregnancy that the child will be born with the disease.
Without early diagnosis and appropriate medical care, between 50 and 80 percent of children born with symptomatic sickle cell disease die before their fifth birthday. Many die from severe infections, anaemia, stroke, malaria-related complications and acute chest syndrome.
For years, these stark figures reflected the lived reality of countless families across Kisumu and nearby counties.
Healthcare professionals now say the story is beginning to change.
Early diagnosis saving lives
One of the clearest signs of progress is the effect of newborn screening and structured follow-up programmes.
Data shared during the event showed that JOOTRH has screened and followed about 500 children from birth over the past four years.
Among those children, only 11 deaths have been recorded, representing a mortality rate of 2.2 percent.
That outcome contrasts sharply with historical mortality estimates and highlights the impact of early diagnosis, preventive medication and regular follow-up care.
Dr. Misore emphasized that early screening saves lives.
The consultant paediatric haematologist explained that once a child is diagnosed early, clinicians can immediately introduce interventions such as prophylactic penicillin, malaria prevention, vaccination support, nutritional counselling and routine monitoring to reduce the risk of life-threatening complications.
The hospital has also improved access to hydroxyurea, a disease-modifying treatment widely recognized as one of the most effective therapies for reducing painful crises, hospital admissions and organ damage among sickle cell patients.
Key supportive medicines, including penicillin prophylaxis and paludrine for malaria prevention, are now routinely available for patients enrolled in care programmes.
Growing demand reflects growing trust
The success of awareness efforts and expanded services is also visible in the rising number of patients seeking care.
JOOTRH’s paediatric sickle cell clinic previously saw about 30 patients every Wednesday.
Today, more than 60 patients attend the clinic each week, reflecting stronger community awareness and greater confidence in specialized care.
Health officials say the increase is linked not only to better services but also to deliberate efforts to reduce stigma and correct misconceptions about the disease.
For generations, many communities associated sickle cell disease with curses, witchcraft or family shame, leading some parents to hide affected children and delay treatment.
That cultural barrier remains one of the biggest public health challenges.
A historic medical breakthrough
Perhaps the most important announcement during the World Sickle Cell Day event was the installation of Kenya’s first permanently stationed public-sector automated red cell exchange machine at JOOTRH’s Victoria Annex Hospital.
The technology, known as apheresis, is among the most advanced interventions used in modern sickle cell management.
Automated red cell exchange removes sickled red blood cells from a patient’s circulation and replaces them with healthy donor red blood cells.
The procedure significantly lowers the risk of severe complications, including stroke, acute chest syndrome, recurrent pain crises and priapism.
Before this development, public patients who needed the procedure often relied on equipment occasionally brought from Nairobi through partnerships with private facilities.
Last year, JOOTRH and Nairobi West Hospital were able to carry out only eight automated red cell exchange procedures.
Hospital administrators recognized that such an arrangement could not sustainably serve a region with one of Kenya’s highest sickle cell disease burdens.
Today, the machine is permanently based at Victoria Annex Hospital under JOOTRH’s management.
Dr. Misore explained that the development means the hospital no longer has to wait until emergencies become severe before intervening.
She said the facility can now conduct automated red cell exchange procedures several times each week, helping prevent complications before they become catastrophic.
Preventing stroke before it happens
One of the greatest concerns for clinicians treating children with sickle cell disease is stroke.
Studies show that children living with SCD face a much higher risk of stroke than the general population.
Many survivors experience lifelong neurological problems, learning difficulties and physical disabilities.
Dr. Misore said JOOTRH is working to introduce Transcranial Doppler (TCD) ultrasound screening, a specialized tool used to identify children at high risk of stroke before symptoms appear.
Once high-risk patients are identified, clinicians can begin targeted interventions, including chronic transfusion programmes and apheresis therapy.
Dr. Misore said modern sickle cell management is moving in that direction globally, with the aim of preventing complications rather than only treating them after they occur.
Building a sustainable public health model
Unlike many donor-driven health projects that collapse once initial funding ends, JOOTRH says sustainability has been built into every part of the programme.
Through a strategic partnership with Terumo, the apheresis machine has been installed and will be maintained for the first five years.
Local clinicians, nurses and laboratory staff have also received specialized training to operate the system independently.
Dr. Misore said JOOTRH’s team recently completed its first smooth automated red cell exchange procedure without external technical support.
Dr. Joshua Okise said in his speech that his management team remains committed to ensuring the uninterrupted availability of consumables and support systems needed to keep the service running.
He added that if demand continues to rise, the hospital is prepared to expand capacity further.
County government intensifies response
In an interview on the sidelines of the event, Frederick Oluoch, Director of Public Health and Sanitation in Kisumu County, said the county government has increasingly recognized sickle cell disease as a priority public health concern.
He said county interventions now go beyond treatment to include prevention, public education, screening and the integration of sickle cell services into wider non-communicable disease programmes.
Oluoch said sickle cell disease is not only a medical challenge but also a social and economic issue affecting families and communities.
He said the county’s focus is to strengthen early diagnosis, community awareness and access to quality care while ensuring that no child is left behind because of where they were born.
According to Oluoch, the county government is working closely with JOOTRH and other health facilities to strengthen referral systems and improve continuity of care for patients across all levels of the health system.
He also stressed the importance of using the Social Health Authority (SHA) to reduce financial barriers that often prevent families from accessing specialized treatment.
Taking services to the villages
Recognizing that many children remain undiagnosed, JOOTRH has launched the MASHINI Programme, a community-driven outreach initiative designed to bring awareness, screening and education services directly into villages.
The programme aims to challenge harmful myths about sickle cell disease while encouraging families to seek testing and treatment.
Healthcare workers involved in the initiative will carry out community sensitization campaigns, identify affected children and connect them to care pathways from birth.
The strategy reflects growing evidence that community-based interventions are vital for improving outcomes in chronic diseases, especially in underserved rural settings.
A vision beyond Kisumu
JOOTRH’s ambitions extend beyond county boundaries.
The institution is already receiving referrals and inquiries from patients in Kilifi, Mombasa, Nairobi and neighbouring Uganda.
Hospital leaders envision Victoria Annex Hospital becoming a regional Centre of Excellence for Sickle Cell Disease and Haematology.
The next phase of development includes establishing a comprehensive haematology centre and a Bone Marrow Transplant unit as part of the ongoing Comprehensive Cancer Care Centre project.
Bone marrow transplantation remains the only widely recognized curative treatment for sickle cell disease, although access is still limited across much of Africa.
If the facility becomes operational, it would place Kisumu among a small number of centres on the continent able to offer advanced and potentially curative sickle cell interventions.
Hope, backed by science
For thousands of families living with sickle cell disease, the developments announced at Katito represent more than technological progress.
They mark a shift from crisis management to evidence-based prevention.
From newborn screening and hydroxyurea therapy to apheresis services and future bone marrow transplantation, Kisumu is steadily assembling the elements of a comprehensive sickle cell care ecosystem.
The vision first championed by the late Dr. George Rae is increasingly taking shape through policy, science and sustained public investment.
For parents who once feared their children’s future was uncertain, health leaders say the message has changed.
There is hope.
It is hope grounded not only in optimism, but in data, innovation, specialized expertise and a growing commitment to ensuring that every sickle cell warrior has the chance not only to survive, but to live a long, healthy and productive life.