Government to start providing sickle cell drugs at Health Centre IIIs
To reduce the cost of medicines for parents caring for people with sickle cell disease, the Government will soon start providing hydroxyurea, an oral sickle cell medicine, at Health Centre IIIs, Dr Ayume has revealed.
Dr Charles Ayume, the State Minister for Health in charge of Primary Health Care speaking to journalists during the National Advocacy Meeting on Sickle Cell Disease on August 9 at Four Points by Sheraton Hotel in Kampala. (Photos by Jovita Mirembe)
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Monica Nakibuuka has a 17-year-old son, Moses Kyazze, who suffers from sickle cell disease. Nakibuuka says her son was diagnosed with the disease when he was only one year old, after doctors recommended that he be tested because he was falling sick frequently.
Although Moses had sickle cell disease, Nakibuuka says he was able to walk, talk and perform normal activities like any other child.
However, when he was nine years old in 2017, he developed a severe flu and cough while at school. He later suffered seizures that turned out to have been caused by a stroke, leading to his admission to the Intensive Care Unit (ICU).
After spending two weeks in the ICU, Moses lost his speech and sight. He also had to be fed through a tube and could no longer sit upright. He has remained without his sight to date.
Nakibuuka says her son is constantly in and out of hospital. However, when he undergoes a blood exchange procedure, which costs about sh3.5m, he can spend at least six months without being admitted to hospital.
His diet is also restricted because he is fed through a tube. On a normal day, when he has no new infection, Nakibuuka says she needs about sh12,000 for his medical care.
“I am a baker who makes cakes for different functions, but I get less business because even some of my friends fear to give me business, saying my son can get seizures at any time, yet the function that needs the cake is ongoing,” Nakibuuka says.
Hope Fortune Achiro also gave birth to a child with sickle cell disease because she and her husband are carriers.
Achiro says before they got married, they did not know that they were both carriers.
“However, when we found out that we were carriers, we went ahead and got married. As believers, we thought prayer would heal our unborn baby and that the child would be born free from sickle cell disease,” she says.
Group photo of members of the parliamentray health committee, civil society health ministers, private sector doctors and care givers of children suffering from sickle cells 
Unfortunately, when her daughter was six months old, she started experiencing seizures. By this time, Achiro had also adopted a baby girl who was suffering from sickle cell disease after being abandoned by her mother because of the condition. She says she adopted the girl so that she could keep her daughter company.
Achiro says the quality of life of the two children was very poor because they lived in constant pain.
“As a pharmacist by profession, I tried to find the best medication for them, but nothing worked. For a sickle cell patient, the blood does not carry enough oxygen, so they cannot engage in vigorous activities such as running and swimming because these activities require adequate blood supply,” Achiro says.
She says the condition also affected their social life and marriage because the girls were constantly in and out of hospital.
Achiro says very few fathers can afford to support mothers caring for children with sickle cell disease, adding that her husband was among the few who supported her.
She eventually had to leave her workplace to take care of the girls because they were frequently admitted to hospital.
“When my daughter was 16, I decided to take her, together with my adopted daughter, for a bone marrow transplant in India. We spent two months there and more than sh800m. Unfortunately, we lost both of them in November 2024 and January 2025, respectively,” Achiro says.
The two mothers have called on the Government to set aside funds to educate the public about sickle cell disease and encourage people to get tested before starting relationships.
They say people who are both carriers of the sickle cell trait should understand the risks before having children, as having a child with sickle cell disease can place a significant burden on families because of frequent hospital visits and medical expenses.
To reduce the cost of medicines for parents caring for people with sickle cell disease, the Government will soon start providing hydroxyurea, an oral sickle cell medicine, at Health Centre IIIs, Dr Charles Ayume, the State Minister for Health in charge of Primary Health Care, has revealed.
Hydroxyurea is a daily oral medicine that helps reduce pain attacks and prevent organ damage.
He said the move is intended to bring the medicine closer to the people because Health Centre IIIs serve large numbers of patients, including communities in hard-to-reach areas and islands.
“As Government, we have tried to get hydroxyurea manufactured in Uganda at Quality Chemical Industries Limited in Luzira. This has reduced Government expenditure on importing the drug from abroad,” Dr Ayume said.
He added that sickle cell testing kits are also manufactured in Uganda, meaning the country now needs to focus on creating greater public awareness about the disease.
“We need to involve religious leaders, traditional leaders and the private sector,” Dr Ayume said.
Isaac Okello, President of the Sickle Cell Alliance Uganda, said statistics show that about 20,000 babies are born with sickle cell disease annually in Uganda.
He said Uganda has one of the highest burdens of sickle cell disease globally, with an estimated 6,000 to 9,000 affected children dying before reaching the age of five.
Okello called on the Government to increase funding for diagnosis and decentralise red blood cell exchange services to more government health facilities.
He said the advanced treatment could help people living with sickle cell disease to live better and healthier lives.
Okello explained that red blood cell exchange in sickle cell disease involves removing a patient's sickled red blood cells and replacing them with healthy donor red blood cells. The procedure helps prevent complications and pain crises associated with the disease.
He also called for increased funding for public awareness campaigns on sickle cell disease, saying this would help reduce stigma by enabling people to understand the condition, how it can be prevented and how those living with it can be treated.
He attributed late diagnosis among many patients to people consulting witchcraft practitioners and traditional healers, who may provide misinformation about the disease instead of referring patients to health facilities and medical professionals.
The meeting was attended by health ministers, doctors, members of the Parliamentary Committee on Health, civil society representatives and caregivers of children living with sickle cell disease.