Kenya has made strides in honouring sickle cell warriors by supporting them, providing affordable sickle cell health care, strengthening survivors and creating awareness despite some individuals succumbing to the silent killer disease due to late diagnosis.
The world commemorates sickle cell awareness day on 19th June annually and the theme for this year is “Building and strengthening Global sickle cell communities, formalizing newborn screening and knowing your sickle cell disease status.”
In Kenya, at least 4000 children are born with sickle cell annually. According to research conducted by the ministry of health, sickle cell cases are severe in Western, Coastal and Nyanza regions.
Kajiado County Referral Hospital has had a number of cases of sickle cell and among the identified cases are referrals from other hospitals outside Kajiado County.
Dr. Phoebe Wamalwa, a paediatrician specializing in diabetes, sickle cell and related diseases noted that Kajiado county referral is among the hospitals facing challenges handling children with sickle cell.
“Many of the children do come here quite late, we receive five year olds with severe anaemia requiring transfusion, or a child who has been having recurrent admissions in the hospital, so upon examination we realise that this child could be having sickle cell anaemia disease,” said Wamalwa.
Highlighting her experience, Wamalwa said they are forced conduct a Haemoglobin Electrophoresis test on children who have been referred to Kajiado hospital to clearly identify the percentage of the sickle cells in their body which is not easy because Haemoglobin Electrophoresis test is unavailable in their hospital, forcing them to refer them to private laboratories in the region.
“In terms of early diagnosis, we are having that particular challenge because ideally in developed countries we should be having pre-natal diagnosis, this is where a bit of amniotic fluid is aspirated and subjected to testing to see if this particular child could be subjected to sickle cell or not, but we are not having that at the moment,” added Wamalwa.
In as much as the county hospital rarely receives sickle cell cases, and faces challenges with the patients they receive, it has had successful stories. Patients have been admitted with severe and recurrent cases requiring multiple transfusions with some having non-functioning spleens but they still survive.
“I cannot remember having lost a child with sickle cell here in Kajiado County Hospital,” she said.
Hydroxyurea, a drug that helps in monitoring patients, has been a game changer for them, as it enables patients to go for monthly follow up, and return for general paediatrics review.
Unfortunately, the drug is not easily available in Kajiado hospital with patients being forced to travel to Nairobi to access it, which however, comes with challenges.
“Whenever they get the drug, they get it in capsule form and when it is that form it becomes hard for parents with children who cannot swallow the 500-milligram capsule, which are also hard to break,” said Wamalwa.
On the myth that sickle cell patients do not live up to advanced ages, Wamalwa said the paediatricians have been trained and educated on how to monitor patients.
The ministry of health in conjunction with specialists and hematopathologists have made available protocols and materials to assist the paediatricians and this has resulted in sickle cell patients of advanced ages.
The 2023 world sickle cell awareness day was marked at Vihiga County nationally where the ministry of health launched the PEN-Plus NCD Clinic at Hamisi Sub- County Hospital that will assist in providing comprehensive screening for sickle cell disease and facilitate referral for diagnosis.