Efforts to tackle the high burden of sickle cell disease in Kenya have received a major boost, following the rollout of a regional programme targeting early diagnosis, improved treatment, and long-term support for affected families.
The initiative, dubbed the SCD KeTan Programme, is a cross-border intervention covering Kenya and Tanzania, with a focus on reducing illness and deaths linked to the inherited blood disorder, which remains one of the leading non-communicable diseases affecting children in sub-Saharan Africa.
According to global estimates cited by programme partners, about 7.7 million people are living with sickle cell disease worldwide, with nearly 80 per cent of cases found in sub-Saharan Africa.
In Kenya alone, approximately 14,000 babies are born with the condition each year, and up to 80 per cent risk dying before their fifth birthday without early diagnosis and proper care.
The three-year programme, running from 2025 to 2028, is supported by Fondation Pierre Fabre and implemented through local partners including the Sickle Cell Federation of Kenya, the Children’s Sickle Cell Foundation and other community-based organisations.
The project has a total budget of about €3 million (approximately Sh450 million), with around €1.3 million (approximately Sh195 million) allocated to activities in Kenya.
Pierre Farbe Foundation General Coordinator for the sickle cell programme in East Africa Abdussalam Poutougnigni, said the initiative is designed to address critical gaps in screening, treatment access, and social support.
“Our objective is to reduce both mortality and morbidity associated with sickle cell disease. We are doing this by expanding diagnostic services, strengthening early detection through newborn screening, and increasing awareness at community level,” he said.
Speaking during a training for healthcare workers in Kisumu County Thursday, Poutougnigni said under the programme, thousands of children and adolescents are expected to be screened, while healthcare systems will be strengthened through targeted training of frontline health workers and community health promoters.
A key pillar of the intervention, he said, is improving access to treatment with the programme targeting to support at least 300 patients with health insurance to ease the cost burden of care, while also promoting availability of essential medicines such as hydroxyurea through innovative models like revolving fund pharmacies in underserved areas.
Recognising the broader impact of the disease on households, the initiative, he said, also integrates socio-economic support, including income-generating activities for affected families, alongside psychosocial care.
He noted that the model relies on empowering local organisations and building partnerships with government and health facilities to ensure continuity and sustainability beyond the funding cycle.
Emily Gumba, Chief Executive Officer (CEO) of the Sickle Cell Federation of Kenya, said the approach marks a shift towards patient-centred care.
“Many programmes have focused on the clinical aspect, but this one puts patients and families at the centre, including economic empowerment. That is critical in managing a lifelong condition like sickle cell disease,” she said.
She added that ongoing advocacy efforts are aimed at ensuring wider access to treatment and integration of sickle cell services into national health systems.
The Ministry of Health has welcomed the partnership, saying it aligns with national efforts to scale up screening and improve disease management.
Speaking during the same occasion, Dr. Yvette Kisaka, Technical Lead for Sickle Cell Disease under the Division of Cancer and Non-Communicable Diseases, said the programme will strengthen early diagnosis, particularly among newborns, while enhancing the capacity of healthcare workers.
“It is our responsibility to ensure that every person living with sickle cell disease has access to quality care. Partnerships like this are critical in accelerating progress,” she said.
In Kisumu County, the programme has already begun strengthening frontline capacity through a two-week intensive training targeting 60 participants, including 30 healthcare providers and 30 community health promoters.
The training is expected to enhance early detection, community awareness, and long-term management of the disease.
At the centre of these efforts is Katito Sub-County Hospital, which runs a specialised sickle cell clinic serving more than 200 patients and is emerging as a key hub for care and follow-up services in the region.
County Director for Public Health Fredrick Oluoch said Kisumu continues to record a high disease burden, with neonatal prevalence ranging between 1.5 and 4.5 per cent.
“If we do not detect and intervene early, up to 80 per cent of these children may die before the age of five,” he warned.
The county, he said, has already screened more than 40,000 newborns and is scaling up interventions in high-burden areas such as Nyakatch and Seme sub-counties.
Oluoch said through the SCD KeTan Programme, the county has received a specialised Gazelle screening machine, which will be deployed in Nyakatch to boost early diagnosis, and appealed for an additional machine to be installed in Seme Sub-County to widen coverage.
At the same time, Nyakatch and Seme sub-counties continue to bear the heaviest burden of sickle cell disease in the area, with screening data showing consistently higher prevalence rates compared to other areas.
He attributed this, in part, to long-standing patterns of intermarriage within closely related communities, which increase the likelihood of both parents carrying the sickle cell trait.
Oluoch noted that while more research is needed to fully understand the social and genetic dynamics, the observed clustering of cases in the two sub-counties points to the need for targeted interventions.
He added that the burden is also seen alongside malaria-prone zones around the lake region, where genetic traits linked to sickle cell have historically persisted.
To address this, the county is intensifying advocacy for couple counselling and screening, particularly during premarital and marriage counselling sessions.
“We want couples to know their sickle cell status early so they can make informed decisions,” he said, adding that expanded awareness and routine testing could significantly reduce new cases over time.
By Chris Mahandara
