Baba Inusa, MBBS, is a Consultant Paediatrician in the School of Life Course & Population Sciences at King's College London.

Baba Inusa, MBBS

Using SWAY’s Global Sickle Cell Data to Close Access, Treatment Gaps

Multinational data from SWAY points to an increased incidence of sickle cell in Sub-Saharan Africa despite persistent gaps in treatment access.

Senior study investigator Baba Insusa, MBBS, points clinicians toward actionable solutions, including global support for medications like hydroxyurea and penicillin, along with collaboration between sub-Saharan Africa (SSA), low- and middle-income countries (LMICs), and high-income countries (HICs), in this interview with 

The SWAY data analysis aimed to compare the impact of sickle cell disease—including symptoms, complications, and quality of life—on patients in SSA compared with those in LMICs and HICs.

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.

“Funding is very important, but what we really need is a joined-up approach that provides a standard framework countries can use—so we can learn from each other and apply best practices across the board,” Inusa said.

Catch up with Part 1 of our conversation here!

Across regions, patients reported broadly similar symptom patterns and complications, suggesting a consistent global clinical phenotype of sickle cell disease. The most common symptoms included fatigue (34%–77%), headache (39%–58%), and bone aches (32%–58%), while complications such as fever (60%–75%), infections (37%–66%), and joint-related issues (29%–65%) were also consistently observed, reinforcing the multisystem burden of disease.

Despite this consistency, differences emerged in acute disease burden and treatment access. More than five vaso-occlusive crises (VOCs) in the prior year were reported in 30% of patients in SSA, compared with 22% in LMICs and 27% in HICs, notably within a younger SSA cohort. Treatment utilization also varied substantially, with lower opioid (26%) and over-the-counter analgesic use (30%) in SSA compared with HICs (73% and 64%, respectively), highlighting disparities in access and care delivery.

Expanding Access Through Essential Medicines

He emphasized that improving access to foundational therapies like hydroxyurea and penicillin should be a global priority, noting that positioning them as essential medicines—and securing support from major funding bodies—could reduce costs and improve both access and utilization.

He highlighted the need for more structured care systems, in which specialist centers are supported by generalist sites with the capacity to treat patients appropriately, helping expand access while maintaining quality of care.

He underscored the importance of incorporating patient perspectives into care and research, noting that symptoms like fatigue—historically underrecognized—are now being identified by patients as a major burden.

Looking Beyond Pain in Sickle Cell Disease

While pain remains central, he stressed that sickle cell disease extends beyond pain alone, pointing to organ damage and broader quality-of-life impacts as critical areas for both care and research.

Driving Investment and Global Collaboration

He concluded that improving outcomes will require stronger investment and collaboration across countries, organizations, and stakeholders, alongside continued efforts to standardize care frameworks and expand access globally.

“There is enough in this study to show we need better access, better investment, and prioritization of these treatments as essential medicines,” he concluded.

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

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. 

. Published online April 2026:100092. doi:

https://doi.org/10.1016/j.bglo.2026.100092

Inusa B. Increased Sickle Cell Pain Burden in Sub-Saharan Africa Despite Younger Patients. HCPLive. Published April 28, 2026. Accessed April 29, 2026. 

https://www.hcplive.com/view/increased-sickle-cell-pain-burden-in-sub-saharan-africa-despite-younger-patients

Videos

Inusa discusses how clinicians can close gaps in sickle cell disease care and global disparities. 

Using SWAY’s Global Sickle Cell Data to Close Access, Treatment Gaps 

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 

 across sub-Saharan Africa (SSA), low- and middle-income countries (LMICs), and high-income countries (HICs).

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.

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%.

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 

“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.

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.

Adigwe OP, Onoja SO, Onavbavba G. A Critical Review of Sickle Cell Disease Burden and Challenges in Sub-Saharan Africa. 

Study investigator Inusa explains the gap in sickle cell disease findings from SWAP, a multinational survey. 

Baba Inusa, MBBS

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