By Ben Musanje
Uganda has launched an urgent national campaign against sickle cell disease, warning that the country is facing one of the highest burdens of the inherited blood disorder in the world, with an estimated 25,000 babies born with the condition every year and thousands dying before reaching their fifth birthday.
Speaking at a press conference ahead of World Sickle Cell Day commemorations scheduled for June 19 in Jinja City, the Director General of Health Services at the Ministry of Health, Prof. Charles Olaro, described sickle cell disease as a growing public health challenge that requires a coordinated national response involving government, religious institutions, cultural leaders, schools, health workers, civil society and families.
“Sickle cell disease is not something we can wish away,” Prof. Olaro said. “It is inherited, meaning it is passed from parents to children and continues through generations. If we are serious about reducing child mortality in Uganda, we must improve the diagnosis, treatment and survival of children living with sickle cell disease.”
According to Ministry of Health estimates, between 13 and 15 percent of Uganda’s population carries the sickle cell trait, translating to nearly six million healthy carriers nationwide. Health experts say this means roughly one in every seven Ugandans carries the gene responsible for the disease.
The burden is enormous. Every year, approximately 20,000 to 25,000 babies are born with sickle cell disease in Uganda, making the country one of the most affected globally. Yet thousands of these children die before their fifth birthday, often without ever receiving a formal diagnosis.
“About 6,000 to 9,000 children die before their fifth birthday due to sickle cell disease,” Prof. Olaro revealed. “These deaths contribute significantly to Uganda’s under-five mortality rate, and the tragedy is that many of them are preventable.”
Uganda Ranked Among World’s Hardest-Hit Countries
Prof. Sarah Kiguli, Chairperson of the National Sickle Cell Task Force and a professor at Makerere University, said Uganda ranks fifth globally and fourth in Africa for the number of people living with sickle cell disease.
“We have a very high burden of sickle cell disease in Uganda,” she said. “About 13 out of every 100 Ugandans carry the gene that causes the disease, and in some regions the prevalence reaches as high as 20 percent.”
She identified Acholi, Lango, Central Uganda, South-Western Uganda and the Busoga sub-region as some of the areas carrying the heaviest burden.
“About one out of every 100 children born in Uganda has sickle cell disease,” Prof. Kiguli explained. “That translates into roughly 25,000 babies every year. This is a major public health challenge that requires urgent attention.”
Despite the grim statistics, health experts insist that sickle cell disease is no longer a death sentence if detected and managed early.
Interventions such as newborn screening, preventive antibiotics, malaria prevention, routine immunization and the use of hydroxyurea—a drug that significantly reduces painful crises and complications—have already demonstrated success in Uganda.
“We have the evidence. We know what works,” Prof. Kiguli said. “The challenge now is ensuring that these interventions reach every child, every family and every community across the country.”
Government Expands Newborn Screening Nationwide
In one of the most significant policy announcements, the Ministry of Health said Uganda is transitioning from limited sickle cell screening programmes to a nationwide newborn screening initiative.
The move aims to ensure that every child born with sickle cell disease is identified early and linked to care before complications emerge.
Prof. Olaro noted that Uganda has already begun distributing locally manufactured sickle cell testing kits and point-of-care diagnostic machines to health facilities across the country.
“No child should arrive at a hospital in crisis simply because they were never screened,” he said.
Health officials say early diagnosis is critical because children who receive prompt treatment can lead healthier and longer lives.
As an example, Prof. Olaro pointed to observations from Kayunga District, where wider access to hydroxyurea has significantly reduced severe complications among children living with the disease.
“Previously, more than half of the children experienced serious complications. With hydroxyurea, those complications have reduced substantially,” he said.
Call for Premarital Testing
A key message emerging from the Ministry’s campaign is the need for widespread premarital sickle cell testing and genetic counselling.
Health experts argue that increasing awareness of carrier status before marriage or childbearing could dramatically reduce the number of children born with the disease.
“We need to champion premarital sickle cell testing with the same energy and determination that Uganda used in the fight against HIV/AIDS,” Prof. Olaro said.
He called upon Members of Parliament, cultural institutions, religious leaders and community influencers to actively promote testing and informed reproductive choices.
“People should know their status before marriage and before having children,” he said. “Knowledge empowers families to make informed decisions.”
The Ministry is also advocating for genetic counselling services to be integrated into healthcare systems, with plans to train more counsellors capable of guiding families through complex genetic information.
Community Awareness Remains a Major Challenge
Health officials acknowledged that myths and misconceptions continue to fuel stigma and hinder prevention efforts.
In many communities, sickle cell disease is still associated with witchcraft, curses or spiritual causes rather than genetics.
“We must move beyond myths,” Prof. Olaro said. “People need to understand what sickle cell disease is, what it means to be a carrier and how they can access testing and care.”
To address this, the Ministry is calling for sickle cell awareness campaigns to become a routine part of community health education rather than being confined to annual commemorations.
District leaders, resident district commissioners, health officers, schools and village health teams have all been tasked with expanding public education through radio programmes, community meetings, schools and health outreach activities.
Officials are also encouraging schools to establish sickle cell clubs to promote awareness among young people.
International Partners Join the Fight
The campaign has also received support from international partners, including Terumo Blood and Cell Technologies and the Joint Clinical Research Centre (JCRC), through the IMARA Framework—a comprehensive sickle cell care model being rolled out in Uganda, Kenya and Côte d’Ivoire.
Dr. Nathan Mulule, Head of Policy and Programs at Terumo, praised Uganda for emerging as one of Africa’s leading countries in sickle cell management.
“Uganda has made remarkable progress and is becoming a model for other African countries,” he said.
The IMARA Framework focuses on four key pillars: community awareness, screening and linkage to care, treatment access, and advocacy.
“For too long, sickle cell patients have been diagnosed late, treated inadequately and left to suffer preventable complications,” Dr. Mulule said. “We want every patient to have a clear pathway from diagnosis to treatment.”
He noted that many children with sickle cell disease die young because they are never identified early enough to receive life-saving interventions.
“Awareness, newborn screening, access to medicines and sustained advocacy can change this story,” he added.
A National Crusade
As Uganda prepares to mark World Sickle Cell Day in Jinja, health leaders are framing the fight against sickle cell disease as a national movement rather than a medical campaign.
Prof. Olaro urged every Ugandan to become an ambassador in the struggle against the disease.
“This is our children, our families and our future generations,” he said. “We have the knowledge, we have the tools and we know what works. What we need now is collective action.”
The Ministry hopes that through expanded screening, stronger community awareness, premarital testing, improved treatment access and sustained government support, Uganda can dramatically reduce preventable deaths and transform the lives of thousands of families affected by sickle cell disease.
“The goal is simple,” Prof. Olaro concluded. “No child in Uganda should suffer or die from sickle cell disease unnecessarily.”
