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Addressing the sickle cell pandemic
Uganda has the tools and knowledge to confront sickle cell disease, but newborn screening must be linked to immediate treatment, a reliable supply of essential medicines and a functional patient-tracking system, writes Mary Kwagala
Mary Kwagala. (Courtesy)
By: Admin ., Journalist @New Vision
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OPINION
By Mary Kwagala
Sickle cell is a national emergency that is rising. According to Professor Charles Olaro, the Director General of Health Services at the Ministry of Health, Uganda has screened more than 500,000 infants for sickle cell disease over the past five to ten years.
However, with an estimated 20,000 to 25,000 babies born with the condition each year, we still have a significant screening gap. Newborn screening must become a strategic national priority to ensure every child is diagnosed early and linked to appropriate care, he said during the 5th Annual Sickle Cell Convention that was held at the Makerere University School of Public Health on 3rd July 2026.
However, with an estimated 20,000 to 25,000 babies born with the condition each year, we still have a significant screening gap. Newborn screening must become a strategic national priority to ensure every child is diagnosed early and linked to appropriate care, he said during the 5th Annual Sickle Cell Convention that was held at the Makerere University School of Public Health on 3rd July 2026.
While the February 2026 rollout of mandatory newborn screening was hailed as a historic milestone, it is also important to ensure that newborn screening is linked to immediate treatment while ensuring stability in the supply of required medicines like hydroxyurea, as frequent stock-outs of essential medicines can undermine the intended benefits of screening; it may also discourage people from screening. It is also important to minimise waiting time for premarital screening results, from four to six weeks to days, so that couples can make informed decisions before pregnancy. Shorter turnaround times would strengthen preventative screening and reduce the number of couples who only discover their genetic compatibility risks after a pregnancy is already confirmed.
There is a need for a functional sickle cell registry and follow-up system to enable reliable data so that diagnosed children can be treated; medicine needs are accurately forecasted. By doing that, the true burden of the disease will be visible and considered in national planning. It is also recommended that Uganda invest in a decentralised tracking system linked to Health Centre IIIs and IVs, so that every diagnosed child is monitored from birth through treatment.
Lastly, Uganda has the tools and the knowledge to confront sickle cell disease. What is needed now is the commitment to connect screening to treatment, treatment to supply, and supply to reliable data. With that, we will move from counting cases to changing outcomes and measurable progress in the fight against sickle cell disease.
The writer is a concerned Citizen and a statistician by training
There is a need for a functional sickle cell registry and follow-up system to enable reliable data so that diagnosed children can be treated; medicine needs are accurately forecasted. By doing that, the true burden of the disease will be visible and considered in national planning. It is also recommended that Uganda invest in a decentralised tracking system linked to Health Centre IIIs and IVs, so that every diagnosed child is monitored from birth through treatment.
Lastly, Uganda has the tools and the knowledge to confront sickle cell disease. What is needed now is the commitment to connect screening to treatment, treatment to supply, and supply to reliable data. With that, we will move from counting cases to changing outcomes and measurable progress in the fight against sickle cell disease.
The writer is a concerned Citizen and a statistician by training