The Ministry of Health has called for nationwide premarital sickle cell testing and genetic counselling to curb the growing burden of the disease.
This follows revelations that about one in every seven Ugandans carries the sickle cell trait.
Dr. Charles Olaro, the Director General of Health Services, said about six million Ugandans are healthy carriers who can pass the condition to future generations.
“Uganda is among the countries with the highest burden of sickle cell disease globally. The sickle cell trait is found in about one in every seven people in Uganda, which translates to roughly 13 to 15 percent of the population, and about six million Ugandans are healthy carriers,” said Dr. Olaro
He said government is expanding newborn screening and access to treatment to reduce deaths among children living with sickle cell disease.
“We are scaling up newborn screening and diagnosis so that children are identified early and linked to care before complications develop,” he said.
Olaro appealed to stakeholders, including religious, cultural, and political leaders, to actively support awareness and prevention efforts.
“We call upon religious leaders, cultural institutions, Members of Parliament and all stakeholders to champion premarital sickle cell testing and genetic counselling. Every one of us has a role to play in ensuring people know their sickle cell status before marriage and childbearing,” he said.
Olaro made the remarks during a press conference at the ministry of health headquarters on Thursday ahead of World Sickle Cell Day being marked in Jinja on Friday.
Prof. Sarah Kiguli of Makerere University and Chairperson of the National Sickle Cell Task Force said Uganda continues to face a significant genetic burden that requires urgent prevention measures.
She noted that in some regions, up to 20 percent of the population carries the sickle cell gene, particularly in Acholi, Lango, Busoga, Central and South-Western Uganda.
“About 25,000 babies are born with sickle cell disease every year in Uganda, which translates to about one in every 100 children,” she said.
Prof. Kiguli said Uganda already has proven interventions including newborn screening, malaria prevention, penicillin use, immunisation and hydroxyurea therapy, but stressed the need for nationwide access.
“What remains is ensuring that these services reach every community, including the most remote areas,” she said.
Dr. Nathan Mulule, Head of Policy and Programmes at Terumo, said partners have developed the IMARA framework to improve structured care for sickle cell patients across Africa.
“For a long time, sickle cell patients have not been properly cared for. They have often been neglected and left out of structured health systems,” he said.
He said the framework, developed with African experts and patient groups, focuses on awareness, screening and linkage to care, treatment access including blood transfusion services, and advocacy.
He added that gaps in diagnosis and treatment continue to contribute to preventable complications and early deaths.
“We want to break this cycle and ensure patients receive continuous and structured care,” he said.