Individuals Living with Sickle Cell Disease in Sub-Saharan Africa Face Substantial Barriers to Managing Their Condition

Patients in sub-Saharan Africa less likely to know details about their disease variant, use over-the-counter medications, and go to the hospital for pain crises

(WASHINGTON — Apr. 14, 2026) — Individuals living with sickle cell disease in sub-Saharan Africa face disparities in treatment and health care access when compared with those in other low- and middle-income countries (LMICs) or high-income countries (HICs), according to findings published in Blood Global Hematology, a journal of the American Society of Hematology (ASH).

“This is the first study to compare the experiences of individuals living in sub-Saharan Africa, where the burden of sickle cell disease is greatest, with the experiences of those living in other LMICs and in HICs,” said first study author Baba Inusa, MBBS, professor of paediatric haematology at the Faculty of Life Sciences and Medicine of King’s College London. “We found that, despite having the same disease, regional and cultural differences substantially influence how they manage their condition.”

Sickle cell disease is the most common inherited blood disorder, affecting an estimated 7.74 million people worldwide. It is characterized by abnormally shaped red blood cells that can obstruct blood vessels and impede blood flow, leading to organ damage, infection, and episodes of severe pain, known as vaso-occlusive crises. Sickle cell disease is more common among individuals of African descent, with sub-Saharan Africa accounting for approximately two-thirds of global cases. An estimated 400,000 infants are born with the condition in sub-Saharan Africa each year.

The analysis was based on patient-reported data from the Sickle Cell World Assessment Survey (SWAY), a multi-country, cross-sectional survey of 2,145 individuals aged 12 years or older living with sickle cell disease. SWAY was a collaboration with medical experts and patient advocates led and funded by Novartis Pharma AG. In this latest output, the team assessed how sickle cell disease affects daily life in sub-Saharan Africa (519 patients) compared with other LMICs (422 patients) and HICs (1,204 patients). The researchers identified several key differences between the groups. Individuals living with sickle cell disease in sub-Saharan Africa were:

• More likely to be unaware of their sickle cell variant (35%), compared with 24% in other LMICs and 19% in HICs
• Less likely to use medications to manage their disease, including over-the-counter pain medications (30% vs. 63% in other LMICs and 64% in HICs), antibiotics (45% vs. 73% vs. 67%), and folic acid (53% vs. 89% vs. 71%).
• More likely to rely on homeopathic remedies to manage vaso-occlusive crises (44%), compared to 5% in other LMICs and 21% in HICs
• Less likely overall to report a high perceived impact of their disease on daily functioning and emotional wellbeing (32%, 52%), compared to other LMICs (31%, 56%), or HICs (43%, 64%)

“Overall, more patients in sub-Saharan Africa manage their pain crises at home and delay going to the hospital. These practices can contribute to higher mortality,” said Dr. Inusa. “To increase survival in this region, it’s critical that we improve diagnosis and access to treatments like penicillin and hydroxyurea.”
Several commonalities also emerged across the regions. Although individuals in sub-Saharan Africa were younger on average, the proportion who reported experiencing one to four vaso-occlusive crises within the past 12 months was comparable across settings (56% in sub-Saharan Africa, 54% in other LMICs, and 50% in HICs). Additionally, fever and infections emerged as common complications, while fatigue, headache, and bone aches were the three most frequently reported disease symptoms.

Given the nature of the study, it has several limitations, namely that survey respondents from sub-Saharan Africa were primarily recruited from clinical centers and may overrepresent patients of higher socioeconomic class. Additionally, the lower reported disease burden in sub-Saharan Africa could be influenced by factors outside the study’s scope, including differences in health care access, reporting practices, or cultural perceptions of symptoms.

The researchers hope to expand their survey to other regions in Africa and incorporate questions assessing the impact of sickle cell disease variants on overall patient experience.

For more than ten years, ASH has been committed to improving outcomes for individuals living with sickle cell disease. ASH’s Consortium on Newborn Screening in Africa (CONSA) has screened approximately 175,000 newborns for sickle cell disease across seven countries in sub-Saharan Africa, connecting children with the condition to clinical care. The program’s newborn screening results were recently published in Blood Advances.

Blood Global Hematology is an open-access journal dedicated to publishing original research, local adaptations of clinical guidelines, epidemiology and public health analysis, and informed opinion pieces that address hematologic issues of global impact, with an emphasis on low- and middle-income countries. It is part of the Blood journals portfolio (bloodjournals.org) from the American Society of Hematology (ASH) (hematology.org).

Contact:
Claire Whetzel, 202-629-5085
[email protected]