This year’s world sickle cell day has happened in the middle of a global pandemic. It reminds us how vulnerable we are as a global community, and underscores the needs to work together to combat diseases that threaten our very existence. A pandemic like COVID-19 may strike any time and from anywhere, thus the need to be prepared any time, by building resilient health systems that are robust enough to handle any such health threats.
Much as we are threatened with infections that have epidemic and pandemic potential, we are daily threated by a number chronic diseases, whose occurrence is not by probability but definite. These diseases are with us every day, and they kill a number of us every day, but not much attention is paid to them as compared to the kind of attention we have paid to COVID-19. Sickle cell is one of those neglected diseases. It is estimated that 300,000 to 400,000 babies are born with sickle cell every year globally, 75% of them in sub Saharan Africa, however, 70% to 80% of them never live to see their 5th birthday.
In Uganda, it is estimated that about 20,000 babies are born with sickle cell every year, but 80% of them never live to see their 5th birthday. About 11,000 children under 5 years die as a result of sickle cell every year. This translates to between 30 to 40 babies dying everyday as a results of sickle cell. However, such a disease never attracts as much attention, and had remained neglected for all the years, not only in Uganda but globally, until recently. To have a day to commemorate sickle cell disease globally is a milestone. I can confidently say that sickle cell will never be a neglected disease any more, at least not in Uganda.
I want to encourage all people living with and families affected by sickle cell disease to take heart. The Ministry of Health and partners are taking definite steps, which are irreversible to decisively deal with the sickle cell disease problem. Many steps are underway and in the near future, the landscape of sickle cell intervention will change for the better. Beginning with the national sickle cell survey which we conducted 2015, followed by targeted newborn screening, we are taking the notch higher to improve sickle cell care. Therefore, our theme this year is; Advancing Care for People Living with Sickle Cell Disease – Get Involved.
To improve care, we are launching the National Sickle Cell Management and Prevention guidelines during this year’s world sickle cell day. This will enable standardizing care not only in hospitals, but home care as well. Please use the guideline to standardize this care at all levels. We have also registered the sickle cell disease transforming drug (Hydroxyurea), and listed it under the basic medicines list. We are in the process of setting up centers of excellence for sickle cell care, working in collaboration with Novartis, a Pharmaceutical company that manufactures hydroxyurea.
Dr. Charles Kiyaga
National Sickle Cell Program Coordinator
MINISTRY OF HEALTH