Since the declaration of sickle cell disease (SCD) as a major public health problem for sub-Saharan Africa by the World Health Organization, which further indicated that 15,000 to 20,000 babies are born with sickle cell disease every year in Uganda, and 80% of them die before their 5th birthday, Uganda has made tremendous efforts towards the management and treatment of the disease as a means to rid the country of the burden.
In 2014, the Ministry of Health carried out a survey to establish the prevalence of Sickle Cell trait and sickle cell disease across the country, which documented a high sickle cell burden, with a national trait average of 13.3%, and disease burden of 0.73%.
However, the distribution is not uniform across the country. In some high burden districts the prevalence of the trait is above 20% and that of the disease above 1.5%.
Uganda has been the 1st country in Africa to come out with national prevalence data, which has also been published in one of the leading journal globally (The Lancet).
As a follow up, Uganda started targeted newborn screening in the high burden districts of Gulu, Lira, Kitgum, Dokolo, Oyam, Tororo, Jinja and Kampala, covering a total of 274 health facilities.
So far over 50,000 new-born babies have been tested. Health workers in these facilities have been trained in sickle cell management and sickle cell clinics have been opened up.
In these clinics, government has ensured availability of prophylactic drugs like penicillin, anti-malarials, and folic acid etc.
This has been complemented by mass sensitization campaigns to create more awareness about the disease amongst communities.
Mass screening campaigns and counselling have also been conducted in several districts. Pre-marital counselling and testing is being promoted in collaboration with religious leaders.
The Ministry plans to scale up newborn screening services to more high burden districts and introduce hydroxyurea, which is a disease transforming drug.
Some children are on it privately and are doing very well.
The Ministry also plans to implement a policy to administer pneumococcal vaccine to children with sickle cell disease above 2 years to protect them from recurrent infections.
These developments, coupled with Uganda’s efforts towards the building and strengthening of sickle cell research and clinical capacity, encouraged REDAC -a network dedicated to combating Sickle Cell disease across sub-Saharan Africa–to nominate Uganda as a host of the 6th International Symposium on Sickle Cell Disease (REDAC 2016).
The conference, which was held last month, was very successful and brought together distinguished scientists, clinicians, policy makers, researchers, advocacy groups, technology and pharmaceutical companies. This conference has raised the profile of sickle cell disease in Uganda.
This year, government decided to celebrate the World Sickle Cell Day in Bundibugyo because the district is one of the high burden districts with a prevalence of 21.7% of trait and 1.9% of disease.
Surprisingly all districts around Bundibugyo apart from Ntoroko with a trait prevalence of 15%, the rest of the districts around it have a prevalence of trait of >10%.
Bundibugyo has always been known to have a high burden of sickle cell disease, since a study conducted in 1949 put the prevalence of trait among the Bamba in Bundibugyo at 45%.
The United Nations General Assembly established the World Sickle Cell Day in 2008 during its 63rd session in order to increase awareness about sickle cell disease, its management and prevention among the public.