MPs Pass motion to fight Sickle Cell Disease

More money is expected to be allocated for the treatment and management of Sickle Cell Disease following a motion passed by Parliament.

Presented on Thursday, 12 March 2026 by Hon. Asuman Basalirwa (JEEMA, Bugiri Municipality), the motion urging government to recognise Sickle Cell Disease as a major non-communicable disease that requires urgent budget attention was adopted during a sitting chaired by Speaker Anita Among.

Moving the motion, Basalirwa said the disease continues to pose a significant public health challenge in Uganda and requires stronger government commitment in prevention, screening and treatment.

Sickle Cell Disease is an inherited blood disorder caused by a mutation in the HBB gene, leading to abnormal, sickle-shaped red blood cells that block blood flow and cause severe health complications.

In the motion titled, “Motion urging government to recognise the Sickle Cell Disease as a major public health concern that requires immediate budgetary attention”, Basalirwa cited constitutional obligations for the state to improve healthcare services.

“Objective XX of the National Objectives and Directive Principles of State Policy of the 1995 Constitution enjoins the State to take all practical measures to ensure the provision of basic medical services to the population,” the motion reads.

Basalirwa also referenced international concern about the disease, noting that the global health community has long recognised its impact.

“The 59th World Health Assembly expressed concern about the global mortality and morbidity caused by the Sickle Cell Disease, particularly in developing countries, as well as the suffering experienced by patients and their families,” the motion states.

Basalirwa told Parliament that available data indicates many Ugandans carry the sickle cell trait.

“In 2016, Uganda was reported to have a significant burden of Sickle Cell Disease, with a national sickle cell trait prevalence of approximately 13.3 percent, indicating that about one in seven people is a carrier,” the motion notes.

He further warned that the disease contributes significantly to child mortality in the country.

“About 20,000 babies are born with the Sickle Cell Disease annually, and approximately 6,000 to 9,000 children die before their fifth birthday, largely due to lack of early diagnosis and inadequate access to comprehensive care,” Basalirwa said while presenting the motion.

The motion also highlights the financial and social strain faced by families caring for patients, noting that the disease often results in recurrent painful crises, chronic medical complications and frequent hospitalisation.

Basalirwa acknowledged that government, through the Ministry of Health, has undertaken several interventions, including newborn screening, targeted testing in high-prevalence areas and integrating treatment services into the national health system. However, he said inadequate funding continues to hinder progress.

“Despite the Government efforts to combat Sickle Cell Disease, inadequate resource allocation and limited investment in sickle cell programmes continue to contribute to increasing prevalence and sustained mortality,” the motion states.

Seconding the motion, Hon. Hope Nakazibwe, the Mubende District Woman Representative, said government should treat sickle cell disease as an urgent public health burden, noting that about 13.3 percent of Ugandans carry the trait.

Hon. Dr Charles Ayume, the MP for Koboko Municipality, said sickle cell disease can be prevented through increased public awareness, like campaigns used to combat HIV/AIDS.

“I encourage that it should not only be scientifically led or because of funding, but politicians should come out quite strong and sensitise the population. At one point you would not get married if you did not have the certificate for HIV testing. We could do the same for sickle cell,” Ayume said.

He added that allocating between Shs5 billion and Shs10 billion for the medicine Hydroxyurea could significantly help patients with the disease to live a better quality of life with limited pain crises and hospital admissions.

Hon. Col. Victor Nekesa, the Uganda Peoples’ Defence Forces representative in Parliament, said children born with sickle cell disease can place a heavy burden on families and the country if adequate support systems are not in place. She added that new technologies could help reduce the disease burden.

The Government Chief Whip, Hon. Hamson Obua, said government has already taken proactive steps to address the disease, noting that several health facilities in the Lango sub-region have been equipped with testing machines to manage sickle cell cases.