More than 1,500 patients suffering from sickle cell disease are struggling to access treatment at Luwero hospital over high transport costs.
In 2011, Luwero Hospital with support from Holly Foundation set up a sickle cell clinic to handle patients each week.
Sickle cell disease is a genetic disorder affecting red blood cells making them unable to efficiently carry oxygen around the body cells. This abnormality is inherited from both parents who are both carriers and sicklers.
The clinic handles 1532 patients of which 1349 are below the age of 15 years. The clinic attracts patients from Luwero, Nakaseke and Nakasongola districts. However, the patients and caretakers say although they welcomed the clinic, they are now constrained to reach it as desired over transport costs from their villages.
Nsubuga Bogere a patient aged 30 years says that he was diagnosed with sickle cell at the age of 15 years and since then he has been surviving on treatment.He explains that he visits the clinic about five times a month for medicine and on each trip he spends 30,000 shillings to travel from Nakasongola district.
Nsubuga however sometimes fails to raise the transport fares to access the treatment at Luwero hospital.
Anne Nyamuhenge a resident of Butiikwa village in Nakaseke district says that she equally spends about 40,000 shillings to transport her child to the clinic for treatment.Nyamuhenge says that the child gets attacks so often making it difficult for return trips to the clinic over lack of money.
Patricia Nakabugo a sickle cell patient says that even after struggling hard to raise transport fares, sometimes they find the clinic with no drugs and are referred to hospitals in Kampala hence incurring extra costs.
The patients and care takers are demanding that the government extend the treatment services to health center IVs located near them or support Luwero hospital to conduct weekly outreaches in the villages.The sickle patients routinely get a blood transfusion, folic acid, multivitamins and Fansidar among other drugs.
Fred Lutaaya a senior counsellor at Holly Foundation an organization that offers extra support to the clinic says that 16 sickle patients died in 2022 after failing to reach the clinic in time for treatment due to transport challenges.
Doctor Steven Magera the Medical Superintendent of Luwero Hospital appealed to well-wishers to donate to them either a motorcycle or vehicle so as to help health workers to conduct outreaches in the village to save the patients from the transport costs.
“We acknowledge the challenge faced by our patients but we don’t have transport means to reach them within the villages. Others came from districts that are not within our jurisdictions,’’ Magera said.
According to the Uganda Demographic and Health Survey (UDHS), 2016, the sickle cell disease prevalence stands at 0.73 percent, while the trait prevalence stands at 13.3 per cent.
It is estimated that 25,000 babies are born annually with the disease with 80 percent dying before their 5th birthday in Uganda.
The 14 districts with the highest sickle cell disease and trait are Kampala, Gulu, Lira, Jinja, Tororo, Luwero, Wakiso, Apac, Iganga, Mayuge, Buikwe, Oyam, Masaka, and Masindi.