• The Ministry of Health’s Guidelines for the Control and Management of Sickle Cell Disease (2021) say there is high mortality of SCD patients in Kenya.
• Prof Mwanda says the cost of managing sickle cell is just too high for individuals to bear, but a dedicated centre would bear most of the burden.
This blood disorder is one of the things that keep Prof Walter Mwanda up late some nights.
It does not attract much government and public attention, yet every year at least 6,000 Kenyan babies are born with sickle cell disease, a group of conditions in which red blood cells are not shaped as they should be.
Instead, they are shaped like a "C" or sickles. The misshapen cells often get stuck in narrow veins and block blood flow, causing pain and infections.
Patients with SCD suffer episodes of excruciating pain and many of them are already addicted to pain control drugs.
Prof Mwanda, a haematologist – a doctor who specialises in blood-related conditions and disease –, now recommends Kenya should establish a comprehensive sickle cell treatment centre.
“As a person with sickle cell disease grows, the rate of admission increases, there is increase in the rate of complications, demand for blood increases. The demand for pain control increases. The psychological impact is huge,” he says.
Only a comprehensive centre would be able to dedicate such services.
“Such would have sufficient facilities, resources both human, infrastructure and others such as pharmacy, laboratory, nursing, social workers, psychological workers, doctors and so on,” he says.
Kenyatta National Hospital, Jaramogi Oginga Odinga Referral Hospitals and a few other facilities have sickle cell clinics, which do not fit the real description of a dedicated unit.
“Dedicated in terms of specific facilities for only those people. Dedicated in the sense of the staff, be their nurses, their doctors, their nutritionists, their psychologists, their social worker, their financial controllers," he said.
"All those would be dedicated to sickle cell. And that is what we call a comprehensive sickle cell centre. I don't think there's any in the country.”
Prof Mwanda currently teaches at the Department of Haematology and blood transfusion at the University of Nairobi, and also sees patients at the Kenyatta National Hospital.
He told the Star that many hospitals, even in endemic areas, take too long to diagnose sickle cell disease.
“Because what we call index of suspicion is not generally high,” he said.
Early diagnosis is essential to beginning treatments that can reduce the risk of life-threatening complications, such as severe infections.
Stem cell or bone marrow transplants are the only cure for sickle cell disease, but they're not done often because of the significant risks involved.
Prof Mwanda says the cost of managing sickle cell is just too high for individuals to bear, but a dedicated centre would bear most of the burden.
At one time, Mwanda and other medics asked the National Health Insurance Fund to increase reimbursements for the treatment of SCD. At that time, the fund only paid hospitals daily rebates, what used to be known as ‘bed charges’.
The Ministry of Health’s Guidelines for the Control and Management of Sickle Cell Disease (2021) say there is high mortality of SCD patients in Kenya. Most of the 6,000 children born with SCD die before they are five years old.
“The high mortality rates are influenced by multiple factors including limited resources leading to poor access to care and lack of comprehensive SCD management programmes,” the guidelines explain.
People born with sickle cell disease inherit two sickle cell genes – called hemoglobin S — one from each parent. A person has Sickle Cell Trait when the faulty gene is inherited from only one parent. This person won't have the disease, but will be a trait “carrier” and can pass it on to his or her children.
The prevalence varies in regions and mimics the malaria endemicity. In the western region, as high as 18 per cent of children are born with a Sickle Cell Trait and 4.5 per cent will end up developing SCD, the guidelines estimate.
In the lake region, about 17 per cent of children are carriers of the trait with 0.6 per cent having SCD while in the coastal region, using inpatient data, almost one per cent of inpatient children have SCD and are almost 20 times likely to die compared to admissions of other morbidities.
The total prevalence will continue to rise. “This number (6,000) would rise to over 10,000 (one in every 100 newborns) per year by 2050 given the projected population growth,” the guidelines suggest.
Prof Mwanda said the SCD crisis is a national issue.
“You should take this as your brother's keeper,” he said.
“More importantly, the one thing that makes them have quality of life is blood, blood transfusion. Just make sure you become a regular blood donor because a sickle cell person may need it urgently and for a sickle cell person, it may mean life or death. It may mean severe deformity, may mean very severe brain damage or lung damage or heart damage.”