Uganda has taken a significant public health step with the launch of a nationwide mandatory newborn screening programme for sickle cell disease, aimed at ensuring that every child’s sickle cell status is known at birth.

The programme was officially launched at the Ministry of Health headquarters in Kampala by the Permanent Secretary, Dr Diana Atwine, under the theme “Every child in Uganda must have a known sickle cell status.” The initiative marks the formal integration of sickle cell diagnosis and care into Uganda’s public health system.

Dr Atwine said the programme will be implemented across all government hospitals, enabling routine screening of newborns at birth and ensuring continuous follow-up care for children diagnosed with the condition.

“This programme signifies the inclusion of sickle cell diagnosis and care in the public health system. Every child born with the condition must be identified early and followed up,” Dr Atwine said.

Strengthening care and early intervention

As part of the rollout, the Ministry of Health has established dedicated sickle cell clinics staffed with specialists to manage complex cases, including children who present with severe complications such as organ failure.

The government has also disseminated national clinical guidelines and trained health workers across the country to improve diagnosis, treatment, and follow-up care. Hospital laboratory capacity has been strengthened through the distribution of testing kits, making newborn screening more accessible and reliable.

Dr Atwine encouraged families with affected children to continue using hydroxyurea, a disease-modifying medication known to reduce pain episodes and complications associated with sickle cell disease.

She noted that while bone marrow transplants and gene-editing therapies remain the only curative options, they are largely inaccessible due to high costs. As a result, she emphasized the importance of premarital testing to prevent unions between carriers of the sickle cell trait.

Why early screening is important

According to Dr Deogratias Munube, a consultant at the Mulago National Sickle Cell Clinic, early diagnosis significantly reduces long-term healthcare costs and improves productivity.

“Newborn screening saves families and the health system substantial resources. Children often appear healthy at birth, with symptoms emerging between three and six months, which delays diagnosis if screening is not done early,” Dr Munube explained.

He stressed the importance of parental counseling and consistent follow-up immediately after diagnosis, noting that early intervention improves survival and quality of life.

“Every child born with sickle cell disease in Uganda deserves to be diagnosed at birth and given a chance to live. Uganda has the potential to become a continental leader in newborn screening,” he added.

High burden, National response

Uganda carries one of the highest burdens of sickle cell disease in Africa, with a national sickle cell trait prevalence of 13.3 percent and approximately 0.7 percent of the population affected by the disease.

Each year, an estimated 240,000 babies are born with the sickle cell trait, while over 17,000 are born with sickle cell disease, particularly in Northern, East-Central, and Mid-Eastern regions.

The programme is being implemented in partnership with Baylor Foundation Uganda, led by Executive Director Dr Dithan Kiragga, with a focus on strengthening early detection, improving care pathways, and scaling up sickle cell disease management nationwide.

Health experts say the initiative represents a lifesaving policy shift, positioning Uganda to reduce preventable deaths, lower long-term health costs, and improve child health outcomes across the country.