On June 19, Uganda joined the rest of the world to commemorate the World Sickle Cell Day under the theme “Break the Silence, Let’s Care”.
This day is dedicated to promoting public knowledge and raise awareness about the sickle cell disease, while highlighting the challenges faced by the people living with the condition.
Sickle cell disease causes progressive organ damage and episodes of severe pain and acute illness. These episodes result from the sticky and stiff red blood cells which clog tiny blood vessels.
In Africa, Uganda has the fifth highest sickle cell burden. Sadly, the majority of our population is not aware of this.
The ministry of Health indicated that 13.5 per cent of our population carries this condition. Currently about 25,000 babies are born, with sickle cell disease every year. Up to 80 per cent of those born will die before their fifth birthday without proper medical care.
The prevalence of the condition varies by region and district. Being a carrier means that a person has a chance of having a child with sickle cell, if they have a baby with another carrier. Such unions continue to add to the sickle cell burden in Uganda. This means that everyone has a responsibility to know their sickle cell status.
Couples should be encouraged to take a sickle cell test. Knowing your sickle cell type and making a conscious decision when choosing a partner can result in a sickle cell disease-free society. Persons with sickle cell traits should have counseling in order to better understand this.
In a recent study conducted by the Uganda Sickle Cell Rescue Foundation and researchers from Clarke International University, 68.7 per cent of people interviewed said they cannot marry a person with sickle cell disease. Sickle Cell disease is not contagious.
A person cannot get it through sex or interacting with someone who has it. This stigma is also fueled by labeling people with sickle cell as “sicklers.”
We know from the developed world that newborn screening, penicillin prophylaxis, and comprehensive care are associated with a 70 per cent reduction in early deaths from sickle cell disease. However, these are yet to be effectively replicated in Uganda.
The ministry of Health has already rolled out newborn screening in high burden areas, but uptake is still low. As parents, it’s our responsibility to request a sickle cell test when our babies have been born. Early diagnosis and treatment saves lives.
After newborn screening, comprehensive care is required to be able to holistically manage and care for people living with sickle cell. However, this is still a challenge across the country because the numbers of specialized sickle cell clinics is still low.
As organizations working in the sickle cell space, we need to work with the ministry of Health to support the establishment of sickle cell clinics in a sustainable manner.
The ministry of Health, with a team of researchers from Makerere University, shared results from a Hydroxyurea study, where they highlighted that this drug is safe in Uganda. However, that drug is not yet supplied by the Government and the market cost is very prohibitive.
As we commemorate this day, we need to remind the government of the need to avail hydroxyurea to thousands of Ugandans living with the sickle cell disease.
Every child deserves a chance to have a productive life. Early diagnosis with prescribed medical care can offer that possibility.
As we commemorate this World Sickle Cell day, let us show some compassion to people living with sickle cell. Let us all avoid the stigma and discrimination. Above all, let us all take a sickle cell test today.
The writer is a person living with Sickle Cell disease and is the Executive Director of Uganda Sickle Cell Rescue Foundation