In the wee hours of the night, as a cold breeze fills my room, I am awakened by a severe sharp and throbbing pain in my chest and right arm. As I gasp for breath, I struggle and fail to move my weakened body off my bed. As tears roll down my eyes, I let out a loud cry that is fueled by the pain I’m in. Still half asleep, at 3:05 am, my mother rushes to my room to ask me if the pain has returned. When I reply that it has, she rushes around the house to look for morphine only to remember that we ran out a few days back. Left with no other choice, she dresses me and tries to figure out how to get us to the hospital. We do not have a car. We rely on boda bodas (local motorcycle taxis) and matatu (minivan taxis) to get from one place to another, but given the hour public transportation would be impossible to find. So, as too many African mothers have had to do, she carries me on her back and walks several kilometers along dark roads to get me the care that I need. By God’s mercy, after a few kilometers, we reach the main road where we find a boda boda man who agrees to take us to Mulago Hospital.

On reaching the Acute Ward, my mother rushes in shouting for help. At this point, I am in so much pain that I barely notice where we are. We are received by an intern and a medical student who seem very sleepy and exhausted. They have probably worked the whole day shift and are on night duty as well. Despite their exhaustion, they hurry to get me a bed in the overcrowded ward. After speaking to my mother very briefly about the history of my illness, they administer IV fluids and painkillers. As they are doing all of this, I look straight into the eyes of the medical student and I ask him, “Doctor, will this pain ever go away? Will these painful attacks ever end? Will I ever be like my friends?” Overcome with emotion, the medical student can’t answer my questions.

The narration above is about 10 year old Allan, a patient who was diagnosed with Sickle Cell Disease (SCD) 7 years ago. He has had several crises, admissions, and blood transfusions. I happened to be the medical student whom he asked those three questions that have stayed in my mind to this day. I spent weeks with a heavy emotional burden on my heart and mind, contemplating the suffering that sickle cell patients go through, especially in the pediatric population. Additionally, families of sickle cell patients are saddled with heavy financial burdens due to the numerous hospital bills they have to pay. This is worsened by the high cost of hydroxyurea, a medication that most sickle cell patients have to take daily.

SCD remains a global health challenge, with a particularly heavy burden in sub-Saharan Africa, where it is estimated that 80% of all SCD cases occur. SCD has a prevalence ranging between 1-2% in North Africa, less than 1% in Southern Africa, while countries such as Cameroon, Republic of Congo, Gabon, Ghana, Nigeria and Uganda have a tragic prevalence between 20-30%. In some parts of Uganda it is as high as 45%.

While progress has been made in Uganda in raising awareness and improving healthcare access for sickle cell patients, one pressing issue persists: the exorbitant cost of treatment. SCD manifests with acute pain episodes, anemia, organ damage, and reduced life expectancy. Hydroxyurea, a medication known to reduce the frequency and severity of painful crises, has emerged as a vital treatment option. However, its availability and affordability pose a significant challenge for many patients and their families.

The unaffordability of hydroxyurea has far-reaching consequences for SCD patients in Uganda. Without proper treatment, individuals with SCD suffer from recurrent and excruciating pain crises, leading to frequent hospitalizations. This not only places an emotional and physical burden on patients, but also strains the healthcare system and drains family resources.

Moreover, the lack of access to hydroxyurea means that patients are unable to benefit fully from interventions that could improve their overall health and well-being. It perpetuates a cycle of suffering, poverty, and diminished life expectancy for those affected by this debilitating disease.

Genetic factors play a significant role in the high prevalence of the disease, with the sickle cell trait found in nearly 13% of the population. This genetic predisposition means that many Ugandans are at risk of inheriting the full-blown disease. Although SCD is very clearly a major public health concern in Uganda, the interventions that are currently in place are not sufficient to address the current burden. Furthermore, systematic screening for SCD using a simple blood test is seldom done, and diagnosis is often made when a child presents with severe complications. In Uganda, 20 000 babies per year are thought to be born with sickle cell disease. 50-80% of these children die before their 5th birthday.

While I commend the tremendous work done so far -by the different players in mitigating this burden, I recommend the need for more widespread awareness about SCD in Uganda, especially among women of reproductive age. Additionally, more research is needed to find better medications to treat complicated cases, as well as to develop a cure. Lastly, more funding and partnerships are needed to lighten the burden carried by financially constrained patients and their families.