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 HCPLive.

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!

SWAY’s Key Findings

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.

Building Coordinated Care Models

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.

Elevating the Patient Voice

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.

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. 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