New hope for sickle cell warriors as Kisumu pioneers advanced treatment

WHO estimates that over 300,000 children are born with sickle cell disease each year, with 14,000 of them in Kenya. [Courtesy] When Michelle Omulo, a 32-year-old filmmaker and disability inclusion advocate, walked into Jaramogi Oginga Odinga Teaching and Referral Hospital's (JOOTRH) Victoria Annex Hospital in Kisumu, she carried both fear and hope. Diagnosed with sickle cell anemia at the age of three, Michelle has endured countless painful crises, two mild strokes, and years of uncertainty about her future. "I was anxious, very nervous," she recalls of the moment she became the first patient in Western Kenya to undergo the Red Blood Cell Exchange procedure. "But I wanted to do it because I've suffered enough. This technology gives us, the warriors, a chance to live." Michelle's courage symbolises a new dawn for thousands of people battling sickle cell disease in the Lake Region. "Thanks to a groundbreaking collaboration between JOOTRH and Nairobi West Hospital, advanced treatment that was once beyond reach is now available closer to home," she says. For Michelle, undergoing the Red Blood Cell Exchange was life-changing. "They inserted a catheter in my femoral vein and connected me to the machine. At first, I felt pain and later extreme cold as the transfusion began. But once it was over, I felt lighter, relieved. I know this will make a difference in my life. I encourage other warriors: pay for SHA, register, and do it. It works." Her mother, Janet Akinyi, has walked this difficult path alongside her. For years, the family struggled to cope, until the Social Health Authority (SHA) came in to cover the cost of the new program. "Michelle was diagnosed at three, and life has been full of ups and downs. When she was in Form Two, she suffered a mild stroke that made writing difficult," Akinyi recalls. At one point, Michelle's hemoglobin dropped to 3.2, and her family feared the worst. "Raising her as a single mother hasn't been easy," Akinyi adds, "but I thank God for this new technology. It has given her another chance." Michelle's story mirrors those of many others in Kisumu. Walter Ombere, diagnosed at just three months old, has spent much of his life in and out of hospital. Despite this, he recently completed high school. "I used to miss weeks of school, but I pushed through. Now I use my passion for poetry and drama to raise awareness in communities like Obunga and Nyalenda," he says. Though stigma about his small body has followed him, Walter insists he uses it as motivation. "This technology gives us hope," he says. At the hospital too was Margaret Ochieng' who had accompanied her 16-year-old daughter, Teresa, for her clinic visit. Diagnosed at four, Teresa, now a Form Two student, has often missed school due to recurrent crises. Her mother, who has struggled with the high cost of treatment, said the new procedure brought her relief and pledged to enroll Teresa in the programme, hopeful it will ease her burden and allow her daughter to focus on her education. According to Dr. Dickens Lubanga, a pediatrician at Bungoma County Referral Hospital, sickle cell anemia is inherited in what is known as an autosomal recessive pattern. "This means a child must inherit two copies of the mutated hemoglobin gene, one from each parent, for the disease to manifest," he explains. "If only one mutated gene is inherited, the individual will have what we call the sickle cell trait. They may not show symptoms but can still pass the gene to their children." The disease stems from a mutation in the gene that produces hemoglobin, the protein in red blood cells responsible for carrying oxygen. Instead of round and flexible cells, patients produce stiff, sickle-shaped ones that block blood vessels, causing excruciating pain, recurrent infections, strokes, and organ damage. Globally, the World Health Organization (WHO) estimates that over 300,000 children are born with sickle cell disease each year, with 14,000 of them in Kenya. In Sub-Saharan Africa, between 50 and 90 per cent of these children die undiagnosed before their fifth birthday due to lack of screening and treatment. Kisumu County is among the hardest-hit regions. Data from the county's Department of Health shows that about 1,500 children are born with sickle cell annually, translating to three to four in every 100 newborns. Alarmingly, about 30 per cent of Kisumu's population carries the sickle cell gene. Sickle cell disease affects nearly 100 million people worldwide and contributes to more than half of deaths among those with its most severe form. Over 70 per cent of affected births occur in Sub-Saharan Africa, where access to specialized care remains limited. Dr Gregory Ganda, Kisumu's County Executive for Medical Services, explains the biology of the disease. "Normal red blood cells carry oxygen smoothly. But in sickle cell, hemoglobin changes the cell shape. These sickle cells burst easily, leading to anemia and jaundice, and they block blood vessels, causing painful crises. When tissues are deprived of oxygen, patients suffer immense pain. To manage this, we increase levels of fetal hemoglobin using hydroxyurea and, when necessary, give transfusions. Without proper medication, many patients need transfusions over and over in their lifetime." Recognising the urgent need, Kisumu County partnered with Nairobi West Hospital to introduce the Red Blood Cell Exchange Programme, an advanced technology that filters out sickled cells and replaces them with healthy donor blood. Joshua Okise, Acting CEO of JOOTRH, says that this procedure is a great milestone in the entire Western Kenya. "Around 90 percent of children born with sickle cell die before their fifth birthday without intervention. This procedure will significantly improve survival and quality of life. We aim to make JOOTRH a centre of excellence in hematology and sickle cell care, and we've already budgeted Sh100 million towards this goal." The medical equipment for the program has been supplied by Nairobi West Hospital. Dr. Prakash Saini, the hospital's Medical Superintendent, explains how the machine works. "In this procedure, we exchange the patient's sickled blood with healthy donor blood. Without it, many patients won't live beyond 30 years, and those who survive risk stroke or organ damage. This technology improves survival, reduces painful crises, and gives patients a better quality of life. At Nairobi West, we have already done over 50 exchanges and 23 bone marrow transplants, with very good outcomes." Dr. Boniface Kairu, a hematologist at Nairobi West, adds: "It isn't a new technology globally, but it is the first time it's being offered in a public facility in this region. We plan to run it regularly-two to three times a month-to serve the high number of patients here." For the program to succeed, an adequate blood supply is essential. "This technology is called Apheresis," explained Dr. Kairu. "It is recommended for patients with frequent sickle cell crises, which may include severe pain, joint aches, jaundice, hemolytic crises, or even complications like stroke and pulmonary hypertension that are not relieved by medication. The procedure works by removing the patient's sickled blood (HbS) and replacing it with normal blood (HbA). Blood is drawn, just like in a regular donation, and passed through a machine that separates it into red cells, plasma, and platelets through centrifugation. The sickled red cells are removed and replaced with healthy ones. This reduces sickled cells from nearly 100 percent to below 30 percent, a level at which patients can remain symptom-free. However, the procedure must be repeated every three to four months, since transfused blood has a lifespan of about 90 days before the body replaces it with the patient's own sickled cells. In a year, this means a patient undergoes the exchange three to four times. "Patients who undergo the treatment often experience dramatic improvement. Pain episodes reduce, hemolytic crises subside, and complications such as priapism disappear. The number of units of blood needed varies depending on the patient's height and weight, typically ranging between five and eight units. The treatment is suitable for all ages, provided the patient weighs more than two kilograms. Each session lasts about two hours, and depending on preparation and blood availability, two to eight patients can be treated in a day. Importantly, most patients are able to get back on their feet shortly after the procedure," says Dr. Kairu. "This process requires a lot of blood," says Okise. "That's why we've set up a 24-hour blood donation centre. We appeal to the public: come forward and donate. The good news is that this procedure is covered by SHA insurance, so patients won't have to pay extra." At JOOTRH, pediatrician Dr. Joy Muyonga stresses the importance of newborn screening. "Through our pilot program, we've already screened over 32,000 babies in Kisumu. Around two per cent tested positive for sickle cell, and 18 percent were carriers. Early detection allows us to start treatment quickly, using hydroxyurea in capsule and syrup forms, available through SHA. We also run weekly sickle cell clinics for children and adults to ensure consistent follow-up." Susan Wakarugi, Director of Partnerships, says: "We are the only hospital in East Africa offering bone marrow transplants, with 100 per cent survival so far. This partnership doesn't replace local services; it supports them, reducing waiting times and giving access to advanced care. Kisumu was chosen because of its high burden of sickle cell and cancer, but we serve patients from across the country." For doctors, patients, and policymakers, the Red Blood Cell Exchange programme represents more than medical progress. It is a message of hope. Okise recalls a touching encounter. "One of our patients told me, 'Some of us don't know if we'll wake up tomorrow.' That really pained me. We knew we had to act fast. This program will give many of them a chance to live longer, healthier lives." The collaboration continues to expand opportunities for patients living with SCD, with health officials urging families to keep their annual SHA contributions updated in order to access the life-saving procedure.

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