African countries are accelerating efforts to integrate sickle cell disease services into their Universal Health Coverage (UHC) programmes, with experts saying sustainable financing, early diagnosis and access to lifesaving medicines remain critical to improving survival and quality of life for millions of patients.
Speaking during the International Sickle Cell Symposium in Nairobi, health experts and policymakers from Kenya, Zambia, Tanzania and Ghana shared lessons on how their countries are embedding sickle cell services into national health systems instead of relying on donor-funded or stand-alone programmes.
The discussions focused on expanding access to newborn screening, diagnosis, treatment, blood transfusion services, referral systems and health insurance coverage for people living with the inherited blood disorder.
Opening the session, experts said integrating sickle cell disease into social health insurance schemes offers the best opportunity to ensure patients receive continuous care throughout their lives rather than seeking treatment only during medical emergencies.
Representing Zambia's Ministry of Health, Dr Catherine Chunda Liyoka said the country has significantly expanded sickle cell care by working closely with patient-led organisations and integrating services into government health facilities.
She said Zambia has increased the number of facilities offering specialised sickle cell care from four to 19, covering tertiary, secondary and primary healthcare facilities. Community organisations have also been formally registered with the Ministry of Health to support awareness campaigns, patient education and advocacy.
Beyond expanding treatment centres, Zambia has rolled out newborn screening programmes, established patient registries and trained healthcare workers at lower-level facilities to diagnose and manage sickle cell disease closer to where patients live.
Liyoka, however, admitted that implementation challenges remain.
"We discovered patients who should have been on hydroxyurea were not receiving it. Emergency patients were not getting pain medication on time, while pregnant women with sickle cell disease were not receiving care according to national guidelines," she said.
She added that feedback from patients and caregivers exposed gaps in communication between health workers and patients, prompting the ministry to introduce measures aimed at improving patient-centred care.
In Tanzania, Dr Lulu Turanda of Muhimbili University of Health and Allied Sciences said financing remains the backbone of universal access to sickle cell care.
Rather than creating a separate financing mechanism for sickle cell disease, Tanzania incorporated treatment into its broader National Health Insurance Fund, allowing patients to receive care through the country's mainstream health financing system.
She noted that while the insurance scheme initially targeted civil servants, it gradually expanded to include workers in the formal and informal sectors. However, voluntary enrolment limited uptake, leaving fewer than one in five Tanzanians covered despite two decades of implementation.
To address the gap, Tanzania enacted a Universal Health Coverage law in 2023 requiring every citizen to have at least a basic health insurance package. The government will subsidise insurance premiums for the poorest households unable to afford coverage.
Turanda said sickle cell patients are now eligible for coverage of hydroxyurea immediately after enrolment into the insurance scheme, following guidance from the Ministry of Health.
She also emphasised integrating sickle cell services into existing maternal, child health and immunisation programmes rather than establishing parallel systems.
"We know care is not only clinical care. Governments cannot do it alone. Awareness creation, capacity building and partnerships are equally important," she said.
Experts also highlighted hydroxyurea as one of the most effective medicines for reducing painful crises, hospital admissions and premature deaths among people living with sickle cell disease.
Dr Isaac O'Donnell of SickKids Hospital in Toronto said Ghana's efforts to improve access to the drug were largely driven by advocacy from parents whose children were living with sickle cell disease.
He recounted how mothers appealed directly to pharmaceutical executives to manufacture affordable hydroxyurea after struggling to access the medicine despite its proven effectiveness.
The advocacy eventually led to partnerships between government, patient organisations and industry that enabled national health insurance to cover the medicine.
However, O'Donnell warned that access remains limited because only a small number of facilities are authorised to prescribe hydroxyurea, while the medicine remains expensive.
He called for African countries to collaborate on local pharmaceutical manufacturing to reduce production costs and improve access across the continent.
"You can't talk about sickle cell disease without talking about treatment. If you diagnose patients, what are you going to treat them with? Hydroxyurea remains the key medicine," he said.
Kenya also outlined how the Social Health Authority (SHA) is positioning sickle cell services within the country's new health financing model.
Joseph Otieno of the Social Health Authority said the Primary Health Care Fund, Social Health Insurance Fund and Emergency, Chronic and Critical Illness Fund all contain provisions that benefit people living with sickle cell disease.
Unlike the former National Hospital Insurance Fund, which restricted patients to facilities they had selected in advance, the Primary Health Care Fund allows registered SHA members to access services in contracted Level Two, Three and Four facilities within their counties regardless of whether they have made contributions.
Speaking during the Symposium, Principal Secretary for Medical Services Dr Ouma Oluga reaffirmed the government’s commitment in integrating Sickle cell disease in “The next phase of sickle cell care will focus on early detection, stronger primary healthcare integration and expanding coverage under the Social Health Authority (SHA),” he said.
He said the Ministry of Health is working to include newborn screening, diagnosis and comprehensive sickle cell management in the SHA benefit package.
The PS said strengthening the health commodity supply chain will also be critical to ensure consistent availability of essential medicines, including hydroxyurea, malaria prevention drugs and safe blood products.
“Newborn screening should become part of the primary healthcare benefit package so that children are identified early and started on treatment,” he said, noting that the government is investing Sh19 billion in primary healthcare.
He added that the ongoing review of the SHA benefits package provides an opportunity to move away from fragmented payments for individual services towards a comprehensive model covering the full continuum of sickle cell care.
“We want a benefit package that enables hospitals to provide complete care instead of paying separately for hydroxyurea, malaria prevention medicines or blood. The package should be comprehensive enough to support the care our patients need,” he said.
The symposium, organised by the Sickle Cell Federation of Kenya, Gertrude's Children's Hospital, the Ministry of Health, and the American Society of Haematology, brought together experts from across Africa to explore ways of integrating sickle cell care into routine health services.
