By Caroline Katana
As Kenya prepares to mark World Sickle Cell Day on June 19, health experts are intensifying calls for greater awareness, early diagnosis, and equitable access to treatment in the fight against sickle cell disease (SCD), a lifelong inherited blood disorder that continues to claim thousands of young lives across Africa.
The Ministry of Health says approximately 7 million people worldwide are living with sickle cell disease, while about 500,000 babies are born with the condition every year, making it one of the most common inherited disorders globally.
More than 75 percent of these births occur in Sub-Saharan Africa, where many children die before they are diagnosed or receive life-saving care.
This year’s World Sickle Cell Day theme, “Closing the Survival Gap: Equity in Sickle Cell Disease,” draws attention to longstanding inequalities that continue to affect people living with the disease, particularly in low-resource settings.
The national celebrations will be held in Busia County.
Speaking during a media and stakeholder sensitization forum ahead of the commemoration, Dr. Yvette Kisaka, Technical Lead for Sickle Cell Disease at the Ministry of Health, emphasized the need to ensure that every child born with the condition has an equal opportunity not merely to survive, but to thrive.
The Ministry notes that sickle cell disease remains a major contributor to childhood illness and mortality in Africa.
Between 50 and 90 percent of children born with SCD in Sub-Saharan Africa die before reaching their fifth birthday, while approximately 500 babies die every day from the disease across the region. Many of these deaths occur before a diagnosis is made.
In Kenya, an estimated 14,000 babies are born with sickle cell disease annually, placing the country among those carrying a significant disease burden. The condition is concentrated in 17 high-burden counties.
Sickle cell disease is an inherited disorder that affects red blood cells, causing them to become misshapen and obstruct blood flow.
The condition can lead to severe pain episodes, anemia, infections, stroke, organ damage, and other life-threatening complications.
For affected families, the impact extends beyond health.
Children living with SCD often experience recurrent pain crises, frequent hospital admissions, missed school days, and long-term health complications.
Families frequently face financial hardship from medical expenses while also coping with emotional and mental health challenges associated with caring for a child with a chronic condition.
According to the Ministry of Health, several factors continue to fuel poor outcomes among people living with sickle cell disease.
These include inadequate public awareness, persistent stigma and myths, limited newborn and infant screening programs, restricted access to diagnostic services and treatment, weak surveillance systems, shortages of trained healthcare workers, and financial barriers that prevent many families from accessing quality care.
Health experts argue that while children born with sickle cell disease in high-income countries increasingly survive into adulthood because of early diagnosis and comprehensive care, many African children still die from preventable complications due to delayed diagnosis and limited access to treatment
To bridge this gap, the Ministry of Health has integrated sickle cell disease into the country’s broader Non-Communicable Diseases (NCD) Strategic Plan, whose vision is to create a nation free from the preventable burden of non-communicable diseases and reduce premature mortality.
The government has established technical working groups to coordinate the national response and has incorporated SCD into broader health policies, including school and adolescent health programs.
Counties are also being encouraged to strengthen local NCD coordination mechanisms.
The Ministry has further outlined a comprehensive model of care that spans all six levels of Kenya’s healthcare system.
At the community level, efforts focus on awareness creation, stigma reduction, identification of at-risk families, adherence support, and strengthening support groups.
Dispensaries and health centres are expected to provide screening, immunization monitoring, malaria prevention, nutrition counselling, and routine follow-up care. County and national referral hospitals are tasked with managing complex cases, specialized treatment, advanced diagnostics, and research.
The Ministry has identified a minimum package of care that every person living with sickle cell disease should have access to.
This package includes screening and diagnosis, penicillin prophylaxis, vaccination, malaria prevention, hydroxyurea treatment and monitoring, pain management, blood transfusion services, screening for complications, psychosocial and family support, transition care, and palliative care where necessary.
Health officials believe widespread access to these interventions could significantly reduce deaths and improve quality of life for patients.
As part of efforts to strengthen the national response, the Ministry plans to expand routine vaccinations and prophylaxis programs, build the capacity of healthcare workers and community health promoters, institutionalize screening services, improve access to essential medicines, and work with stakeholders to reduce treatment costs through pooled procurement systems.
Authorities also intend to establish and strengthen patient support groups, which are seen as critical in addressing stigma, promoting treatment adherence, and providing psychosocial support to affected families.
In addition, advocacy efforts are underway to encourage insurance providers to develop benefit packages specifically tailored to the needs of people living with sickle cell disease.
The government is also investing in community awareness campaigns and the identification of local and national champions to amplify prevention and management messages.
The Ministry acknowledges that weak data systems have contributed to the neglect of sickle cell disease over the years.
To address this challenge, plans are underway to establish disease-specific registries, conduct operational and implementation research, strengthen monitoring and evaluation systems, and improve data quality through regular audits.
Health officials say stronger evidence will help guide policy decisions and resource allocation.
As Kenya prepares to mark World Sickle Cell Day, health advocates are calling on journalists to move beyond statistics and tell the human stories behind non-communicable diseases (NCDs), arguing that media coverage remains one of the most powerful tools for improving awareness, reducing stigma, and influencing policy.
Speaking during a Pre-World Sickle Cell Day Media Sensitisation Webinar organized by NCD Alliance Kenya, executive director of NCD Alliance Kenya Dr. Catherine Karekezi emphasized that effective health advocacy is built on amplifying the voices of people living with diseases and ensuring their experiences shape public discourse.
“Non-communicable diseases are more than data. They affect real people,” she said.
Kenya continues to face a growing burden of NCDs, including cancer, diabetes, cardiovascular diseases, chronic respiratory illnesses, and sickle cell disease.
According to NCD Alliance Kenya, media engagement has become a crucial pillar in raising awareness, influencing policy decisions, and mobilizing communities around prevention and treatment.
The alliance has built a nationwide advocacy structure comprising 60 active member organizations, county chapters, national caucuses, technical working groups, and a media network of more than 45 trained journalists dedicated to NCD reporting.
Over the years, the organization has also trained more than 170 journalists on NCD reporting, equipping them with the skills needed to cover health issues accurately, ethically, and sensitively.
Dr. Karekezi noted that journalists who have personal or family experience with NCDs often play an important role in bridging the gap between professional reporting and lived realities.
For many patients and caregivers, closing the survival gap is more than a policy goal—it is a matter of life and death.
