People with sickle cell are a worried lot for they not only have to grapple with high cost of treatment and shortage of trained health personnel but also limited awareness.

People with the inherited blood disorder say since most of them have to take medication throughout their entire life, this turns out to be too expensive.

“For Hydroxyurea capsule of 500 mg, the only recommended drug in Rwanda, a tablet cost between Rwf400 and Rwf500, translating into Rw12000 and Rwf15000 per month, respectively,” said Javier Niyigena, a sickle cell patient.

“We are supposed to use three tablets a day, according to the doctor’s prescription,” he said.

Majority of Rwandans receive treatment through Mutuelle de Santé, allowing them to buy drugs at affordable prices from public pharmacies. However, patients say sickle cell drugs are only sold in private pharmacies where the universal medical insurance does not cover the costs.

“We want the government to help us by reducing the prices and supplying the drugs to all facilities in town and rural areas,” added Mr Niyigena.

In addition, services such as diagnosis and specialised treatment are costly and offered in a few hospitals such as University Teaching Hospital (CHUK), Kanombe Military Hospital and King Faisal Hospital. But for patients who can afford a bone marrow transplant, there is no hospital with equipment and specialists to conduct the operation.

According to Dr Amiable Kanyamuhunga, a consultant paediatrician oncologist at CHUK, sickle cell is a life-long condition that people are born with.

“Bone marrow transplant is the only procedure that cures sickle cell anemia, otherwise other treatment processes are just to reduce the trigger and ensure the recipient enjoys life like any other person suffering from a chronic disease,” said Dr Kanyamuhungu.

According to Dr Kanyamuhungu, there is lack of awareness and research on the prevalence of the disease in the country, making it hard for stakeholders and concerned parties to take action.

The condition comes from a genetic defect that alters the structure of S haemoglobin (the oxygen-carrying protein in the red blood cells).

The modified haemoglobin causes round blood cells to become stiff, sticky and sickle-shaped.

The deformed cells can block blood flow, causing severe pain, organ damage, and stroke. Individuals with sickle cell also have a problem of poor vision World Health Organisation), estimates that each year, over 300,000 babies with severe forms of this disease are born worldwide and about five per cent are healthy carriers of a gene for sickle cell.

The report further indicates that in Uganda, and DRC the prevalence rate for sickle cell anemia is 45 per cent and 30 per cent respectively.

Dr Kanyamuhungu advises mothers to carry out neonatal screening (newborn screening) to test for a group of health disorder that isn’t otherwise found at birth.