KAMPALA — Uganda has hosted a landmark continental workshop bringing together African health ministers, technical experts, development partners and civil society leaders to validate and launch the Africa Centres for Disease Control and Prevention (Africa CDC) Continental Plan for Sickle Cell Disease and Other Rare Blood Disorders.
The three-day meeting at Speke Resort Munyonyo seeks to establish a coordinated African response to one of the continent’s most pressing but historically neglected public health challenges. The workshop attracted representatives from African Union member states, the World Health Organisation, UNICEF, UNFPA, the United States government and patient advocacy groups.
Uganda’s Minister of Health, Dr Jane Ruth Aceng, described the gathering as a historic moment for Africa’s public health response to sickle cell disease (SCD), noting that the continent continues to carry more than 80 per cent of the global burden of the disease.
“Beyond the validation of the document, convening here helps us to reaffirm Africa’s collective commitment to the millions of children and families who live in the shadow of Sickle Cell Disease every single day,” Dr Aceng said during the opening session.
She added that over 300,000 children are born with sickle cell disease in Africa each year and warned that without intervention, up to 90 per cent of them may not survive beyond their fifth birthday.
“These are not statistics, but our children!!! And today, we say: enough,” Dr. Aceng stated.
Uganda itself ranks fifth in Africa in sickle cell disease burden after Nigeria, the Democratic Republic of Congo, Tanzania and Cameroon, with an estimated 20,000 affected newborns annually.
The Director General of Health Services, Dr Charles Olaro, said Uganda’s health system continues to confront serious challenges in diagnosis and treatment despite progress made over the years.
“Approximately 20,000 children are born with SCD in Uganda each year. The majority are not diagnosed at birth. They first come to our attention during a painful crisis, often when complications have already taken root,” Dr Olaro said.
He noted that families caring for children with SCD frequently face catastrophic healthcare costs that push households into poverty, especially in communities where malaria further worsens the disease burden.
However, officials said Uganda’s ongoing programmes have demonstrated that early diagnosis and comprehensive care can significantly improve survival and quality of life for children living with sickle cell disease.
“When a child is screened at birth, linked to care, started on hydroxyurea, and followed up consistently, they survive. They grow. They go to school. They have a future,” Dr. Olaro said.
The Health Ministry highlighted Uganda’s partnership with the Consortium on Newborn Screening in Africa (CONSA), through which more than 500,000 newborns have been screened over the past decade using central laboratories and satellite clinics.
Dr. Aceng said Uganda had now launched locally manufactured screening kits to accelerate early diagnosis across the country.
“Uganda launched locally manufactured test kits that are very sensitive in newborns. This is a great milestone as we accelerate newborn screening for SCD,” she said.
Uganda has also implemented the Strengthening Care Access and Linkage for Sickle Cell Disease (SCALE) programme in partnership with Texas Children’s Global HOPE, helping integrate SCD services into primary healthcare systems while training specialist nurses and paediatric haematologists.
According to the ministry, more than 2,000 patients in Uganda and the East African region have already accessed hydroxyurea treatment through regional partnerships and clinical collaborations.
The Permanent Secretary at the Ministry of Health, Dr. Diana Atwine, said Uganda’s experience had shown that integrating screening into routine child health services was both practical and effective.
“The 70% newborn screening target by 2035 is achievable — Uganda’s experience shows it can be done by integrating screening with child health services,” Dr. Atwine said.
Dr. Atwine further warned that fragile supply chains remain one of the biggest operational threats to treatment continuity across the continent.
“Supply chain fragility is the biggest operational risk. We strongly support the continental pooled procurement mechanism,” she said.
Dr Olaro also urged African countries to prioritise stronger health data systems and long-term planning during the implementation of the Continental Plan.
“We cannot manage what we cannot measure, and Africa’s SCD response cannot be held accountable without standardised, real-time data,” he said.
The Continental Plan is structured around eight strategic pillars covering governance, prevention, early detection, psychosocial support, health systems strengthening, financing and monitoring systems. Key targets include screening at least 70 per cent of newborns by 2035 and ensuring 80 per cent of eligible patients access hydroxyurea treatment.
Uganda also committed to integrating sickle cell screening into the Expanded Programme on Immunisation, finalising a national SCD strategic plan aligned with the continental framework, and sharing lessons from its CONSA and SCALE programmes with other African countries.
Dr Aceng called on development partners to maintain support for African-led health initiatives despite changing global funding priorities.
“Uganda urges partners to align behind this Continental Plan, pool resources, and trust African institutions — led by Africa CDC — to coordinate a unified response,” she said.
Addressing people living with sickle cell disease directly, Dr. Olaro acknowledged years of neglect and suffering faced by affected families across the continent.
“You have lived with pain that most of us cannot imagine. You have navigated health systems that were not designed with your needs in mind,” he said.
Dr. Aceng concluded with a pledge that African governments would now move from discussion to implementation.
“To the people living with Sickle Cell Disease in Uganda and across Africa: you have waited long enough. This plan is for you. We see you. We will act,” she said.
