Beyond the disease: Closing data gap in sickle cell fight

About 14,000 children are born with sickle cell disease each year. [Courtesy]

In Kenya’s fight against sickle cell disease, the biggest challenge is not only the illness itself but the health system surrounding it.

From missing data and delayed diagnosis to limited access to essential medicines, critical gaps continue to undermine care. Health experts say solutions already exist, but progress depends on stronger coordination, sustained investment and a deliberate shift towards early screening, reliable data and consistent treatment.

At the centre of this effort is Prof Constance Tenge, a paediatrician at Moi University and member of the Sickle Cell Federation of Kenya (SFK), where she serves on the scientific committee and leads the Sickle Cell Disease Registries and Control Programme.  “One of our biggest challenges is that we are working with estimates,” Prof Tenge says. “We estimate that about 14,000 children are born with sickle cell disease each year, but without organised national data, we cannot confirm this. That uncertainty affects planning, resource allocation and policy decisions.”

A 2022 multi-county survey conducted in Bungoma, Busia, Kakamega, Vihiga and Trans Nzoia exposed major service gaps and revealed a fragmented data system. 

To address this, Prof Tenge and her team developed patient encounter forms designed to function as both a national registry and a care monitoring tool. “The initial form captures demographic details, family history, care-seeking patterns and interaction with community health promoters,” she explains. 

The goal, she says, is not only documentation but continuity of care. With standardised data collected across facilities, Kenya could begin measuring disease trends, evaluating quality of care and guiding national health policy more effectively.

However, translating systems into practice remains a challenge. “We have the technical knowledge,” she says. “What we lack is funding and coordination. If facilities consistently collect and channel data from county to national level, we could transform sickle cell care in this country.”

Beyond data collection, Prof Tenge emphasises the importance of early and strategic screening. She argues that adolescence presents a critical window. “At that stage, young people can understand what it means to be a carrier or to have the disease,” she says.

She cautions against screening couples shortly before marriage, a common, but often ineffective approach. “By then, many decisions have already been made. Screening should be part of a continuum — beginning with newborn screening in high-burden areas and reinforced during adolescence.”

Diagnosis also remains a major obstacle.

According to the 2022 survey, only 17.3 per cent of individuals identified with sickle cell disease had undergone confirmatory testing. Procedures, such as haemoglobin electrophoresis and high-performance liquid chromatography (HPLC) are essential for distinguishing between carriers and individuals living with the disease.

“Preliminary tests may suggest sickle cell disease, but confirmatory tests provide the full picture,” Prof Tenge explains. 

Even after diagnosis, many families struggle to access treatment, particularly essential medicines, such as hydroxyurea. In response, community-based organisations have stepped in to bridge critical gaps.

Hilary Kosano, Head of Operations and Partnerships at Don Amolo Memorial Kids Ark (DAMKA), has helped lead one such initiative in Kakamega County. Since 2020, DAMKA has supported approximately 454 children living with sickle cell disease across several sub-counties. “We quickly realised there was a serious gap in medication access,” Kosano says. “Either drugs were unavailable in public facilities or too expensive in private pharmacies.”

To tackle this, DAMKA introduced a revolving pharmacy fund — a model designed to ensure affordability while remaining sustainable. “We purchase medication at wholesale prices and distribute it based on a patient’s ability to pay,” he explains.

Under the system, the most vulnerable patients receive medicines free of charge, others pay subsidised prices, and those able to afford more contribute slightly higher fees that help sustain the programme. “Hydroxyurea can cost about Sh25 per tablet through us,” Kosano notes. “In some chemists, it sells for Sh50 or even Sh100. We are simply making treatment accessible.”

Revenue generated is reinvested into purchasing medicines, supporting pharmacy staff and maintaining a steady drug supply. “It is not about profit,” he emphasises. “It is about ensuring no child misses medication.”

Importantly, the revolving fund operates within public health facilities and in collaboration with county health departments. “We complement the hospital system rather than compete with it,” Kosano explains. “Patients first visit the hospital pharmacy. If medicines are unavailable, they are referred to us.”

Despite these efforts, Kosano believes the current figures underestimate the true burden of sickle cell disease. “The 454 children we support are only those we know,” he says. 

Stigma, limited awareness and inadequate screening continue to conceal cases. “That is why we are expanding screening and building a registry,” he adds.

DAMKA is now preparing to roll out newborn screening and point-of-care testing across several facilities.

Financial barriers remain another persistent challenge. With only about 34 per cent of patients enrolled in active health insurance schemes, many families still pay out-of-pocket for treatment, affecting adherence and outcomes.