Nura Kemis - Kenya Strengthens Regional Leadership in Sickle Cell Disease Care as Experts Call for Expanded Early Diagnosis and Comprehensive Care;
The Kenya Sickle Cell Disease Symposium gathered leading government officials, health care professionals,researchers and patient advocates to accelerate regional progress in sickle cell disease diagnosis and care.
The event was co-convened by the American Society of Haematology (ASH),the Ministry of Health of Kenya (MoH),Novo Nordisk Haemophilia and Hemoglobinopathies Foundation,Pierre Fabre Foundation,Novartis,and hosted by Gertrude’s Children’s Hospital,with sponsorship support from the ASH Foundation.
Held under the theme “From Diagnosis to Care: Improving Awareness and Support for Sickle Cell Disease,” the symposium provided a platform for participants from Kenya and across the region to exchange evidence, share best practices and identify practical solutions to strengthen sickle cell disease care.
Discussions reinforced the importance of making sickle cell disease a public health priority by expanding equitable access to early diagnosis, comprehensive care and lifelong support.
The symposium highlighted Kenya’s growing leadership in advancing sickle cell disease care through innovations in newborn screening, comprehensive care, research, health workforce development and community engagement.
Participants noted that Kenya’s experience is helping inform approaches to sickle cell disease care across Africa, demonstrating how collaboration between governments, healthcare providers, researchers and patient organisations can improve health outcomes.
“Kenya has demonstrated remarkable leadership in advancing sickle cell disease care through strong partnerships,dedicated healthcare professionals,and growing investments in newborn screening, comprehensive clinical services, and community engagement,” said Dr Robert Negrin,President,American Society of Haematology.
“Scientific advances are only meaningful when they reach the patients and families who need them most.
That means investing not only in research,but also in healthcare workers,laboratory systems, implementation science,community health programs,and strong national health systems.”
Sickle cell disease remains one of the world’s most common inherited blood disorders and continues to pose a significant public health challenge, particularly in sub-Saharan Africa.
An estimated 515,000 babies are born with the condition globally each year, with most cases occurring in the region. Yet between 50 and 80 per cent of affected children do not survive beyond their fifth birthday due to delayed diagnosis and limited access to comprehensive care.
For more than a decade,ASH has worked alongside the Government of Kenya, the haematology community, hospitals, patient advocates and community-based organisations to strengthen sickle cell disease care through research, education, workforce development and long-term partnerships.
Through the Consortium on Newborn Screening in Africa (CONSA),ASH has supported efforts to demonstrate that newborn screening linked to comprehensive care can save lives while helping build sustainable health systems.
Kenya is one of seven African countries participating in the initiative,with lessons from its experience helping shape newborn screening programmes across the region.
Dr Bernard Awuonda,CONSA Kenya National Coordinator, noted,“What began as a demonstration project in Kisumu has evolved into a national movement of hope,proving that newborn screening and a compassionate early linkage to care are human rights.
Having successfully screened more than 40,000 infants, we are expanding our networks and empowering local communities to eradicate the pain of SCD.Our collective goal remains clear:
universal access to early screening,robust linkage to clinics,and an elevated quality of life for everyone living with sickle cell in Kenya.”
Dr Doreen Karimi, Consultant Paediatric Haematologist-Oncologist at Gertrude’s Children’s Hospital, said,“Bone marrow transplant treatment changes the conversation around sickle cell disease from lifelong management to potential cure.
As we finalise on our bone marrow transplant unit at Gertrude’s, we are building the local capacity for children with severe disease to access transplantation without having to travel abroad,at a fraction of the cost and closer to their families.
This is a critical next step in the continuum of care that begins with newborn screening and must ultimately give families a path to a cure, not just crisis management.”
Throughout the symposium, participants explored practical approaches to strengthening newborn screening programmes, integrating sickle cell disease into national health priorities and social health insurance,expanding access to treatment, advancing research,strengthening the healthcare workforce and addressing stigma that continues to affect individuals and families living with the condition.
The symposium also reaffirmed the importance of ensuring that scientific research translates into meaningful improvements in patient care.
Participants emphasised that sustained collaboration among governments,healthcare institutions,researchers,patient organizations and development partners will be essential to closing persistent gaps in diagnosis, treatment and access to quality care.
“The Sickle Cell Federation of Kenya welcomes this symposium as a critical step toward advancing equitable,patient-centred care for people living with sickle cell disease.
Every day, thousands of Kenyan families face delayed diagnosis,unaffordable treatment,stigma and uncertainty about accessing lifesaving care.
As one patient powerfully expressed,‘Living with sickle cell disease is not just about pain crises; it is about missed school,missed work,hospital bills and the constant fear that care may not be available when it is needed most.’
”We call on national government, counties,healthcare providers,development partners and communities to translate these lived experiences into action by prioritizing newborn screening, comprehensive care,access to essential medicines and safe blood,and ensuring that no person living with sickle cell disease is left behind,” said Emily Gumba,Chief Executive Officer,Sickle Cell Federation of Kenya.
The Kenya Sickle Cell Disease Symposium concluded with a shared commitment to accelerate progress towards ensuring that every person living with sickle cell disease has access to timely diagnosis,evidence-based treatment and lifelong care.
By bringing together expertise from across disciplines and sectors,the symposium reinforced Kenya’s growing role in shaping the future of sickle cell disease care across Africa.
