From Survival to Strength: New Technology Offers Lifeline to Sickle Cell Patients in Western Kenya

Kisumu, February 10 – When the chest pain struck, Antony Lubuka Olila thought his time on earth had come to an end. “I felt a sharp, intense pain I couldn’t explain,” he recalls. “It was the worst chest pain I had ever experienced. Doctors identified it as acute chest syndrome, one of the most dangerous complications of sickle cell disease. It was tough.”

Between 2016 and 2019, the Busia-based teacher at Bugengi Primary Special School, which serves learners with special needs, endured repeated episodes of the life-threatening condition. At 54, Lubuka has lived with the genetic blood disorder his entire life. He has buried siblings who had it. He has survived blood transfusions, crippling pain crises and decades of stigma. Yet he still walks into a classroom each day to teach and impart life skills to special needs learners.

“I have been a teacher for 30 years,” he says. “Sickle cell disease is not a death sentence.”

For Lubuka, a husband and father of two, the disease has never been an abstract statistic. It has been a lifelong companion – sometimes silent, other times brutal. “Pain is almost a constant companion,” he says calmly. “Sometimes you can go for months, even a year, without a major crisis. But when it comes, it hits hard.”

Listening to his body has become as critical as any prescription. In 2016, he made a personal choice to stop taking sugar and heavily spiced foods. “I stopped using sugar, and I started feeling some relief from the constant pains,” he says. “I don’t know if sugar caused the chest pain, but nowadays I don’t feel it.”

He is cautious not to generalise. “I don’t say sugar is bad because I have no medical evidence. But in my experience, it affected me.” He switched to simple, mostly boiled foods. “Spicy foods upset my stomach and cause discomfort, so I stick to natural foods.”

His story mirrors that of thousands of families across Western Kenya, where sickle cell disease remains one of the most under-recognised public health challenges.

According to the World Health Organization (WHO), about 14,000 children are born with sickle cell disease (SCD) each year in Kenya. Across Africa, an estimated 240,000 children are born with the condition annually. Globally, nearly 100 million people live with SCD, with over 70 per cent of affected births in Sub-Saharan Africa. In the region, 50 to 90 per cent of affected children die before their fifth birthday, many without ever being diagnosed.

Many face preventable complications such as stroke, severe anaemia and acute chest syndrome simply because specialised care has been out of reach.

Behind those statistics are lives shaped by pain, resilience, and increasingly, hope. For patients like Lubuka, awareness remains a major gap. He is not yet aware of new treatment technologies, which reflects the broader need for increased public awareness. “We need support, care and information,” he says. “If people knew more about treatments, more lives could be saved.”

A new technology improves survival prospects

In Kisumu, that awareness gap is being addressed through medical innovation. At the Victoria Annex of Jaramogi Oginga Odinga Teaching and Referral Hospital (JOOTRH), clinicians have permanently installed the Spectra Optia Apheresis System, developed by Terumo Blood and Cell Technologies. The machine shifts care from conventional transfusions to automated red cell exchange, selectively removing sickled red blood cells and replacing them with healthy donor cells.

Using centrifugation, the system separates blood components, removes the abnormal cells, and transfuses healthy donor red cells back into the patient. This reduces haemoglobin S levels from nearly 100 per cent to below 30 per cent, improves blood flow and oxygen delivery, and significantly lowers the risk of complications such as stroke and acute chest syndrome.

Sickle cell disease is caused by a mutation in the beta-globin gene. Instead of round, flexible red blood cells, patients produce rigid, crescent-shaped cells that block blood flow, deprive tissues of oxygen and trigger severe pain. Over time, organs including the lungs and brain are damaged. Acute chest syndrome – the complication Lubuka endured – remains leading causes of death. Stroke is another life-threatening complication, particularly in children.

Traditional management relies on supportive care, hydroxyurea to increase protective fetal haemoglobin, and manual blood transfusions. But chronic transfusions can lead to iron overload, damaging the liver and heart. Medical experts say automated red cell exchange reduces that risk more precisely.

Kevin Otieno of Conrad Science, which collaborated in installing the system, says its capabilities extend beyond sickle cell. “We have introduced one of its key capabilities: red cell exchange for sickle cell patients. Beyond that, we will expand its use to therapeutic plasma exchange, platelet collection for oncology patients, stem cell collection and bone marrow processing. Over time, we can even begin autologous transplants and specialised depletion procedures for patients with complex haematological needs.”

Dr. Thadeous Masawa, a consultant pathologist, says the treatment is structured, not curative. “Red blood cells live about 120 days, so patients need repeat procedures every three to four months. The goal is to reduce crises and improve quality of life.”

Dr Brenda Misore, a paediatric haematologist and oncologist, highlights its importance for children. “Many complications seen in adulthood begin in childhood. The goal of red cell exchange transfusion is to prevent these complications early, allowing children to grow, develop and live healthy lives.”

Previously, patients travelled to Nairobi or relied on visiting private facilities, paying up to Sh120, 000 per session. “Permanent local availability reduces delays, travel costs and overall expenses,” she says.

The silent burden of stigma and data gaps

Lubuka was diagnosed at about two years old. In a family of nine children, four were born with sickle cell disease. Today, he is the only one alive. “My sister died in 2016 after a stroke. One brother died at 10 after severe malaria. Another died in a road accident,” he says.

At 46, Lubuka began taking hydroxyurea. “Hydroxyurea has strengthened me and reduced the frequency of crises.”

He has also endured critical transfusions. At 24, shortly after starting his teaching career, a severe malaria-induced anaemic crisis left him hospitalised for nearly a month with a haemoglobin level of 2.8 g/dL.

“That was my first worst crisis. It almost knocked me off,” he recalls. Yet he returned to the classroom. “Even now, I am still serving,” he says with a smile. “I have educated Kenyans. We can be beneficial to society.”

His voice sharpens when he speaks about stigma. “Many people believe that people living with sickle cell disease cannot live for long. Another thing they believe is that people living with sickle cell disease are weak and they cannot do anything. People with sickle cell disease are just human beings like any other person.”

Beyond stigma, he says, the country is still grappling with a data gap. “We don’t have a national register to know how many cases we have,” he notes, highlighting how weak surveillance continues to hinder planning and response.

Globally, early screening has transformed outcomes, cutting childhood mortality from over 50 per cent to below 5 per cent in high-resource settings. SCD not only causes severe medical complications and chronic pain but also imposes heavy emotional and economic strain on families.

Locally, however, progress is emerging. Dr Steven Ojuma, Director of Victoria Annex Hospital, says the impact is visible. “Sickle cell disease touches almost every family here. This is the first public facility in Kenya with this technology permanently installed.” In Kisumu, about one in five children is born with the sickle cell trait, and among 500 children followed from birth over four years, only 11 died – a 2.2 per cent mortality rate compared to historical figures of up to 80 per cent, says Dr. Ojuma.

Western Kenya, in a malaria-endemic zone around Lake Victoria, bears a disproportionate burden. Kisumu County is among the hardest-hit areas. About 1,500 children are born with sickle cell disease annually. Approximately 30 per cent of the population carries the sickle cell trait, meaning two carriers have a 25 per cent chance with each pregnancy of having a child with the disease.

According to the Ministry of Health (MoH), about 248,718 Kenyans are living with SCD, with an estimated 400 deaths annually. The disease is most prevalent in 18 out of 47 Counties, particularly in Western, Nyanza and Coastal regions. Recent data from Kisumu and Kisii counties indicate prevalence rates of between 1.5 and 4 per cent, with migration and intermarriage contributing to its wider spread. Although a centralised national registry is still in development, regional registries at JOOTRH and KEMRI continue to support data collection.

Dr. Patrick Amoth, Director General for Health in the MoH says it has developed a strong policy framework to guide prevention, diagnosis, management and patient support, including the establishment of a multi-sectoral Hematological and Rare Diseases Technical Working Group bringing together key stakeholders.

Dr. Amoth says SCD financing is structured through the Primary Healthcare Fund, which covers infant screening and essential preventive care such as folate, penicillin and malaria prophylaxis, pain management and immunisation boosters. Under the Social Health Insurance Fund (SHA), patients can access outpatient care capped at Sh2,000 per visit (up to four visits annually), as well as inpatient services, medical imaging, and pharmacy and specialised laboratory services limited to Sh5,000 per quarter per person.

However, sickle cell programming in Kenya remains hampered by low public awareness and stigma, limited newborn screening, and diagnostic services confined to five counties – Kisumu, Uasin Gishu, Busia, Nairobi and Kilifi (KEMRI), the ministry notes. Shortages of trained providers, frequent stock-outs of essential medicines, weak surveillance systems pending a national registry, and high out-of-pocket costs further restrict access to care.

Beyond Kisumu

About 100 kilometres away in Bungoma County, Dr Dickens Lubanga estimates nearly 1,000 children are living with sickle cell anaemia. “Access to hydroxyurea and specialist care remains limited, especially in rural areas. SHA coverage for outpatient medication is inadequate. This machine, alongside newborn screening and outreach, can reduce these barriers,” he says. Without routine screening and care, children risk dying from preventable infections, severe anaemia, or acute chest syndrome before their fifth birthday, adds Dr Lubanga.

While Kisumu County has made strides through specialised centres, partnerships for affordable medication, and expanded newborn screening, however, the burden of sickle cell disease remains heavy. Patients from Bungoma, Vihiga, and Busia counties are expected to benefit from the regional availability of automated exchange transfusion. For children at high risk of stroke, regular red cell exchange can cut incidence by more than 90 per cent. While it does not replace hydroxyurea, it offers a vital option for severe cases.

The technology is supported by a financing and sustainability model designed to keep the service accessible. JOOTRH Chief Executive Officer Dr Joshua Clinton Okise says the installation was made possible through a public–private partnership. The hospital has secured five years of technical support, ongoing staff training, and funding for consumables and maintenance. If demand rises, a second machine will be added to expand capacity, says Dr. Okise

The resilience behind the medicine

While clinicians celebrate innovation, survival for patients like Lubuka is built on daily discipline as well. “Doctors told me to reduce overstraining and rest more,” he says. “But as an African man with family obligations, I have to keep working hard.”

His resilience is also rooted in self-advocacy – monitoring his diet, tracking symptoms, and adjusting daily habits. “What has given me strength,” he says, “is acceptance. Accepting my condition early in life and choosing to live positively with it.”

“I feel like a fighter,” he says with conviction. The school day is over. He swings his backpack over his shoulder as he stands ready to lock his office door, and as we walk towards the gate, he adds, “I have faced many battles, and the journey has not been easy.” He had asked not to be photographed.

Now a grandfather, he sees himself as proof that survival beyond childhood is possible. “I am 54 years old and still going strong. With proper medication, regular clinic visits and self-care, people living with sickle cell disease can grow, thrive and give back to the community.”

He is not asking for sympathy. He is asking for increased awareness. He spends every moment of his free time leading advocacy in schools and his community to reduce stigma and correct myths about sickle cell disease.