If you do not know your sickle cell status, go to ministry of Health Central Public Health Laboratories (MOH/CPHL) on Buganda Road, get tested or find out more about sickle cell testing. Ministry of Health (MOH) in partnership with a team of researchers from Cincinnati Children’s Hospital in the USA set up a laboratory at CPHL, the first of its kind in the country and in the region.
So CPHL is conducting a surveillance study to map the prevalence of sickle cell across the country for one year. But the capacity of the laboratory is far beyond the needs of the survey so CPHL has started a phased screening programme alongside the survey and intends to scale it up after the study.
The birth prevalence of serious genetic birth defects that include congenital heart defects, sickle cell disorder, down syndrome and neural tube defects in Uganda is estimated to be at 61 of every 1,000 live births. About 25,000 babies are born with Sickle Cell disease (SCD) every year, but unfortunately, 70-80 per cent die before their fifth birthday.
Less than 20 per cent of Ugandans know their SCD status.
Screening and treatment methods of birth defects can be implemented at an early stage to avoid their complications and increase an affected child’s possibilities of a better quality of life. For example, early detection of sickle cell anaemia followed by prophylactic oral penicillin and pneumococcal conjugate vaccination reduces the risk of serious infections during first years of life.
There has been no new born screening and no pre-marital genetic counseling in Uganda. Individuals with the sickle cell trait and sickle cell disease are intermarrying ignorantly and compounding this problem. Diagnosis is usually done late and many children die before they are diagnosed. Disease interventions require proper diagnosis, follow up and then link to care programmes because of the difficulty in caring for what is not clear.
In Uganda, sickle cell screening has been integrated in the early infant diagnosis (EID) programme for HIV screening at MoH. EID programme took advantage of the power of the cell phone revolution in Uganda and it is possible to get new born screening results in a timely manner using GSM printers.
There will be screening of children for SCD at health centres III using sickling test and then the cases that are positive are referred to the reference laboratories for HB electrophoresis using cellulose acetate. This is a national strategy to put a match to or ignite care momentums and avoid complications and increase the affected child’s possibilities of a better quality of life.