Increased Sickle Cell Pain Burden in Sub-Saharan Africa Despite Younger Patients

A multinational SWAY survey is shedding light on disparities and commonalities in symptoms, complications, and quality of life among patients with sickle cell disease (SCD) across sub-Saharan Africa (SSA), low- and middle-income countries (LMICs), and high-income countries (HICs).1

The findings suggest that individuals in SSA experience a higher frequency of severe vaso-occlusive crises despite being younger and having more limited access to pain management and supportive therapies, underscoring persistent global gaps in care.1

Study design and global cohort

Sickle cell disease disproportionately affects sub-Saharan Africa, where approximately 80% of global cases occur and mortality among children under age 5 ranges from 50% to 80%.2

The SWAY data analysis was a multicountry survey conducted between April and October 2019, developed by international SCD experts, patient advocacy groups, and Novartis. The study included 2,145 patients aged 12 years and older across three regions: SSA (n = 519), LMICs (n = 422), and HICs (n = 1,204).

Patients in SSA were younger overall, with a median age of 15 years, compared with 19 years in LMICs and 29 years in HICs.

Speaking to the rationale for the analysis, investigator Baba Inusa, MBBS, Consultant Paediatrician in the School of Life Course & Population Sciences at King’s College London, emphasized the importance of understanding how health system differences shape patient outcomes and care experiences across regions in an interview with HCPLive.

“We thought it was important that we understand why we are observing those differences, and how those differences can be addressed by different countries, because different countries have different healthcare systems and different approaches in terms of funding and family structures,” said Inusa.

Symptom burden and clinical complications

Across all regions, patients reported broadly similar symptom patterns and complications, suggesting a shared clinical phenotype of sickle cell disease globally. The most commonly reported symptoms included fatigue (34%–77%), headache (39%–58%), and bone aches (32%–58%).

Complications were also consistently reported across settings, including fever (60%–75%), infections (37%–66%), and joint-related issues (29%–65%), reinforcing the multisystem nature of the disease regardless of geographic region.

Vaso-occlusive crises and acute disease burden

Despite similar overall symptom patterns, notable differences emerged in acute disease burden. The proportion of patients experiencing more than five vaso-occlusive crises (VOCs) in the prior year was highest in SSA at 30%, compared with 22% in LMICs and 27% in HICs.

Importantly, this higher burden of recurrent VOCs occurred in a younger SSA population, highlighting a disproportionate severity of acute disease despite earlier age distribution in the cohort.

Treatment access and care-seeking behavior

Marked disparities were also observed in treatment utilization and care-seeking patterns across regions. Opioid use was substantially lower in SSA at 26%, compared with 73% in HICs. Use of over-the-counter analgesics followed a similar trend, reported in 30% of SSA patients versus 63% in LMICs and 64% in HICs.

Care delivery patterns further reflected structural differences in health systems and access to services.

“In Africa, the majority of patients tended to undergo treatment at home. If they had pain or other episodes, they treated it at home, whereas patients in Europe and the US tend to go to the hospital and often have periods of admission,” said Inusa.

Key takeaways

Overall, the SWAY analysis highlights both shared and divergent experiences of sickle cell disease across global regions. While symptom profiles and complications were broadly consistent, significant disparities emerged in vaso-occlusive crisis frequency, treatment access, and care-seeking behavior.

Findings underscore that patients in sub-Saharan Africa experience a higher burden of acute vaso-occlusive events despite being younger, alongside substantially more limited access to pain management and supportive therapies—reinforcing persistent inequities in sickle cell disease care worldwide.

Editor’s Note: Inusa reports relevant disclosures with Novo Nordisk A/S.

References

1. Inusa B, Andemariam B, Minniti C, et al. Sickle Cell Disease Burden in Sub-Saharan Africa Compared to Other Regions: Results from the SWAY Survey. Blood Global Hematology. Published online April 2026:100092. doi:https://doi.org/10.1016/j.bglo.2026.100092

2. Adigwe OP, Onoja SO, Onavbavba G. A Critical Review of Sickle Cell Disease Burden and Challenges in Sub-Saharan Africa. Journal of Blood Medicine. 2023;Volume 14(1):367-376. doi:https://doi.org/10.2147/jbm.s406196

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