Despite the progress, experts said several gaps remain in sickle cell care, particularly in mental health services, reproductive healthcare and support for adolescents.
Uganda has taken a major step towards strengthening the fight against sickle cell disease, with the Government announcing plans to amend the Public Health Act to formally recognise the condition as a major non-communicable disease and allocate it a dedicated budget.
The announcement was made during the 5th Annual Sickle Cell Convention, organised by Raising Hope International Friends in collaboration with Ministry of Health, and held at the Makerere University School of Public Health under the theme: “Building Sustainable Sickle Cell Support Systems in Uganda and Beyond Through a Multi-Sectoral Approach.”
The convention brought together government officials, health experts, researchers, development partners, cultural and religious leaders, civil society organisations and families affected by sickle cell disease to discuss long-term solutions to one of Uganda’s most common inherited blood disorders.
State Minister for Health Dr Francis Ayume said Parliament has already recognised sickle cell disease as a national public health priority, prompting the Ministry of Health to begin reviewing the Public Health Act.
The proposed amendment will provide a legal framework for sickle cell services and ensure government funding instead of relying mainly on donor-supported projects.
Health experts welcomed the move, saying the disease has for years remained underfunded despite affecting thousands of Ugandan families.
The Ministry also unveiled a national roadmap for sickle cell disease, haemophilia and other inherited blood disorders covering all 146 districts. It further confirmed that June 19 has been gazetted as National Sickle Cell Disease Day.
Isaac Okello, the Executive Director Raising Hope International Friends who also serves as the President of the Sickle Cell Alliance Uganda said that this year’s national commemoration in Jinja saw more than 14,000 people screened for sickle cell disease across nine districts.
HIV model
Speaking during the convention, Director General of Health Services Prof. Charles Olaro called on stakeholders to adopt strategies similar to those used in Uganda’s successful HIV response.
He proposed establishing a national sickle cell care cascade modelled on the HIV 95-95-95 framework to improve diagnosis, linkage to treatment and long-term patient care.
Rev. Canon Prof. Gideon Byamugisha, who has lived with HIV for more than three decades, said stigma against people living with sickle cell disease can only be overcome through sustained public awareness, community involvement and coordinated support from families, faith institutions and government.
The convention also recommended adoption of the IMARA Framework, an integrated care model developed by the Global Coalition on Sickle Cell Disease with experts from Uganda, Kenya and Côte d’Ivoire.
The framework seeks to strengthen the entire continuum of care, from community awareness and newborn screening to diagnosis, treatment and long-term follow-up.
Local solutions
Delegates welcomed Uganda’s growing capacity to locally manufacture medicines and diagnostic tools for sickle cell disease.
Quality Chemical Industries Ltd has started producing hydroxyurea locally, a medicine widely used in managing sickle cell disease.
Microhaem Scientifics has also begun manufacturing rapid sickle cell diagnostic kits with production capacity exceeding national demand.
Medical technology companies showcased portable blood-typing equipment capable of supporting emergency blood transfusion services, particularly in hard-to-reach areas.
Uganda also highlighted its growing leadership on the continent after hosting the validation and launch of the Africa CDC Continental Framework for Sickle Cell Disease and Other Rare Blood Disorders earlier this year.
The country has committed to screening at least 80% of newborn babies for sickle cell disease by 2028.
Challenges remain
Despite the progress, experts said several gaps remain in sickle cell care, particularly in mental health services, reproductive healthcare and support for adolescents.
Prof. Miriam Nakalembe called for specialised care for pregnant women living with sickle cell disease, warning that pregnancy remains one of the highest-risk periods for affected women.
Dr Grace Bikumbi urged government to integrate mental health services into routine sickle cell care, saying many patients struggle with chronic pain and psychological stress.
Dr Joseph Rujumba highlighted stigma in schools and workplaces, noting that many children with sickle cell disease miss significant school time because of illness while adults continue to face discrimination in employment.
A moving testimony from Jerome Ivan Ayazika, whose son survived both a stroke and a bone marrow transplant, underscored the heavy emotional and financial burden borne by families. He appealed to fathers to become more involved in caring for children living with the disease.
Action plan
The convention resolved to fast-track implementation of Uganda’s National Sickle Cell Strategy through a fully funded action plan.
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Key priorities include expanding newborn screening to 80% of babies by 2028, establishing a national sickle cell registry, increasing government financing, integrating mental health and reproductive healthcare into routine services, decentralising specialised treatment and intensifying public awareness campaigns to eliminate stigma.
Closing the convention, Prof. Sarah Kiguli said no single institution can overcome the burden of sickle cell disease alone.
She urged government, health workers, researchers, cultural institutions, civil society and development partners to work together in building a sustainable national response similar to Uganda’s successful fight against HIV/AIDS.