Today, the world commemorates World Sickle Cell Day. More than 200,000 babies are born each year with sickle cell disease in the world with Uganda contributing about 33,000, a 17 per cent of the global annual births. About 80 per cent of these babies born in Uganda do not live to celebrate their 5th birthday.
About 20 per cent Ugandans carry the sickle cell gene, which account for 7.5 million of the 37.8 million population (United Nations Social and Economic Affairs Division 2013).
According to UNICEF, 141,000 children below the age of 5 years die annually in Uganda and 16.3 per cent have sickle cell disease. This means 22,983 children die of sickle cell disease, 63 children with sickle cell die every day and 3 children are lost every hour that passes.
‘The bubonic scourge of our time’. ‘The worst health calamity in human history’. These are ominous words and phrases that can describe sickle cell disease.
The literature on sickle cell disease has been growing, but not the awareness about sickle cell judging from vast ignorance about the cause of the disease which threatens the survival of humanity.
The spread of sickle cell all over the world is rooted in modern man’s ignorance. Because the modern man has decided that folly is better than wisdom, sickle cell continues to take its heavy toll on humanity.
The spread of sickle cell disease in the modern world is indicative of ignorance. There is always a direct relationship between tribe and the level of the spread of sickle gene prevalence rate in Uganda. The available data on the prevalence of sickle cell trait (SCT) and annually estimated number of sickle cell disease cases in Uganda, is based on the past survey by Lehman and Rapper in 1949.
The prevalence of SCT varied among Ugandan tribes, with the Karimojong, Bakiga, Banyakole and Bahima recording the lowest frequency of 1-5 per cent, Baganda, Iteso, Acholi and Banyoro recording 16-20 per cent, Basoga, Bagisu and Lugbara recording 20-28 per cent and Bamba recording the highest frequency of 45 per cent which is believed to be the highest in the whole world.
In Uganda, sickle cell anaemia remains the most frequent and traumatising genetic disease which continues to devastate the families of sickle cell patients both mentally and economically.
Increasingly, sophisticated treatments have cut the sickle cell death rate in industrialised countries but in Sub-saharan Africa the epidemic is gathering momentum.
In most countries in Africa, leaders are not worried about the costs both economic and emotional this disease causes.
I should say to those who wield the power to change the current situation “If you do not work with those who are suffering today to address the problem of sickle cell, you will have to deal with them later when they will get more dangerous and more expensive.
Many people think that sickle cell disease is a health issue. You are wrong. Sickle cell can no longer be confined to the health or social sector portfolio. Sickle cell is turning back the clock on development. To be effective, prevention measures must be paired with investments that will create jobs, invigorate the education system and pull the poor out of the ‘here now’. People who are trapped in poverty aren’t going to do much about health care.
The Holy books (Quran and Bible) teach us that many communities were destroyed because the people were self indulgent to the point of self destruction. These communities failed to heed the advice of God’s prophets and the dictates of ‘inner prophets’.
The author is the Country Representative
African Sickle cell News and World Report – Nigeria