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

Baba Inusa, MBBS

In recognition of Sickle Cell Disease Awareness Month, HCPLive revisits a conversation with Baba Inusa, MBBS, a consultant paediatrician in the School of Life Course & Population Sciences at King's College London, about a global survey comparing the experiences of patients with sickle cell disease (SCD) across sub-Saharan Africa, other low- and middle-income countries (LMICs), and high-income countries (HICs). The full conversation was previously covered in 2 parts: 

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

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

Q&A: Addressing Global Care Gaps in Sickle Cell Disease, With Baba Inusa, MBBS

HCPLive: Can you explain the gaps you set out to study, and what prompted the decision to compare the experiences of patients with sickle cell disease across sub-Saharan Africa, other LMICs, and HICs?

I'm a pediatric hematologist, and I've been involved in quite a number of research studies looking at the diagnosis, the challenges, and the needs in terms of gaps in services across different global geographic settings. This work, funded by Novartis, was to understand how disease patterns compare between high-income countries, sub-Saharan Africa, and other low- and middle-income countries. Even though a majority of patients in the US, UK, and Europe have a similar background to patients from Africa, we observed differences in adherence to therapy and in responses that patients have and expectations. This became very obvious in some of our research involving countries across different regions. We thought it was important to understand why we were observing those differences and how they could be addressed by different countries, because different countries have different healthcare systems, different approaches to funding, and different family setups. That is why we found it important to look at these differences and try to characterize them, because it's important for how we address patients' needs.

HCPLive: Can you walk us through the major findings, and share if any of them were surprising to you?

The total population surveyed was 2145 patients across the countries. The majority came from high-income countries, with three low- and middle-income countries other than Africa, and two low- and middle-income countries from Africa, which were Ghana and Nigeria. We compared the different subgroups. It became obvious that patients recruited in sub-Saharan Africa were much younger, but that recruitment was entirely from expert clinics, whereas recruitment from the other settings had a significant proportion from community-based organizations (CBOs). So it's entirely possible that some of the differences we observed might be because of how patients were recruited, or because patients in Africa were younger.

We observed that treatment modalities sought were different, because the majority of patients in Africa tended to undergo treatment at home if they had pain or other episodes, whereas patients in Europe and the US tended to go to the hospital and be admitted. We thought, could that be because of different social networks that allow people to manage patients at home? We also looked at the three most common features patients reported, including headache, fatigue, and pain. These were the three most common across the different groups, but in Africa, fatigue did not come out as the highest. Why didn't they report fatigue as the most common compared to the other regions? These are some of the things we're trying to understand.

It was also surprising that patients from sub-Saharan Africa asked more for psychosocial support compared to the other patients, even though the nature of their disease was not very dissimilar. Prescriptions for supportive treatment, like folic acid and penicillin, were much lower in sub-Saharan African patients, and we know clearly that penicillin prophylaxis is very important. Hydroxyurea use was also much lower, but this survey was done in 2019, so this may have changed. There was lower utilization of some disease-modifying agents, and these treatments were paid for out-of-pocket by patients in sub-Saharan Africa. If you lose days of work, you lose your income, because the social safety net in Africa is weaker, whereas in other settings you can receive pay through sick leave despite not going to work. If you're on a zero-hour contract, you don't get work, you don't get money, so that's going to affect people's desire to be admitted to hospital. First, you pay the cost of care, and second, you lose work, and this may have influenced patients' preference to be managed at home. On the flip side, if the family and community social network is much more robust, it's entirely possible that people are much more comfortable not having to go to hospital to be managed.

Pain presentations were similar across the board, but those with higher pain episodes, more than 5 vaso-occlusive crises (VOCs) per year, were much higher in the sub-Saharan African patients. It's interesting, because pain episodes are expected to be less severe in younger children, but in this population, more than 5 episodes in the last 12 months was actually higher. This emphasizes the need for us to refocus on what we should emphasize in terms of our patients.

HCPLive: What do you think are the main structural drivers behind these regional differences in care access and treatment use?

Health systems are very important. In Europe, including the UK, access to healthcare is not dependent on income. There's community support and hospital support that is available, whereas in Africa that system is weaker, and most of it is driven by what patients themselves can afford to do and cope with without affecting the welfare of other children. Both systems in Europe and the US have a much more robust health system, and that helps reassure parents and patients to seek care.

There's also the reluctance of patients to go to hospital. We know that sometimes people worry about stigma, or how they're treated in hospital. If they're not treated well, they'll say there's no point going, because they're asked the same questions every time. Cost is important, systems are important, and the absence or presence of a social network will have a major impact. Awareness matters too, because who is looking after these patients, specialists or generalists? Where there's a very high burden of disease, patients tend to be seen by other healthcare workers rather than physicians, so how much information those workers have to pass on to patients will also influence health-seeking behavior and utilization. I think systems and education are important, but also availability and affordability of services. You may know what to take, but if you cannot afford it, that's a major challenge.

HCPLive: Based on your findings, where do you see the most immediate opportunity to intervene, whether that's medication access, acute care delivery, or community-level management?

I think you've really highlighted the areas I wanted to emphasize: access and affordability. We've written papers suggesting there should be more global support for medications like hydroxyurea and penicillin, so they become essential medications. Organizations like the Global Fund and other bigger funding bodies could contribute significantly to reducing cost, which would improve access and utilization. We've been trying to involve the World Health Organization (WHO) and other organizations to bring this to bear. In terms of service structure, specialist centers should be supported by generalist centers that have the capacity to treat properly, with professionals available and patients able to access them easily. This effort shouldn't only be left to those organizations; pharmaceutical companies can also contribute significantly, and a number of foundations supported by drug companies and civil society have already had significant input. Community-based organizations have also contributed to filling some of these gaps. Funding is very important, but having a joined-up approach that provides a standard framework different countries can use, so we can learn from each other's best practices, is what will benefit patients across the board.

HCPLive:  What is the single most important takeaway clinicians and health systems should draw from this study when thinking about sickle cell disease care globally?

It's important that the patient voice is heard. Previously, we didn't pay too much attention to problems like fatigue; we focused more on pain. But patients are telling us fatigue is key, almost top of their agenda. We need to listen to patients and involve them at various stages of drug development and service provision. We also need to address end-organ damage, not only pain. A lot of the endpoints people look for in drug development are pain-related, but sickle cell disease is beyond that, and patients are telling us there are other things we need to pay attention to. Quality of life is paramount, because if we improve the health of these patients, they'll contribute significantly to society. Psychosocial support is also an issue across the board, not just hospital provision. Finally, there's great importance in collaboration between high-income, middle-income, and low-income countries. I come from a low- and middle-income country myself, but I work in a high-income country, and I think the role of people in the diaspora in their home countries should be acknowledged and strengthened, both through governments and through organizations like the WHO and charities.

HCPLive: Is there anything else about the study you'd like to highlight?

Inusa: I feel that this study is an eye-opener and should lead to further studies. It's important for us to dig deeper to understand why patients are or aren't seeking treatment, whether that's based on individual factors, income, or a decision they've made because they feel it's what works for them. That would require additional qualitative studies to identify some of these key subjects and understand what's driving their decisions. We also need to understand the impact of age on presentations and decisions, through a study involving all age groups and a wider range of countries, so we can understand what factors are at play across Africa, the Americas, and Europe, and what the cost of care means for patients economically and for their decision-making. We know there are over 7 to 8 million patients with sickle cell disease across the world, and management systems are very different, so it would be important to understand the impact on their lives beyond health alone. I'm advocating for more research in this area, so we can better explain some of these findings. But there's enough in this study to tell us there's a need to improve access, and to achieve better utilization, there needs to be greater investment and priority placed on essential drug lists. This is happening now, as we're part of the WHO expert group developing frameworks for specialist and comprehensive centers, which I think can go a long way toward harmonizing care.

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

Articles

A 2,145-patient global survey highlighted marked regional differences in sickle cell disease care across sub-Saharan Africa, other LMICs, and HICs, with important confounding from younger African cohorts and recruitment largely via expert clinics. Sub-Saharan African respondents more often managed crises at home, faced higher out-of-pocket costs, and reported lower use of penicillin prophylaxis and hydroxyurea (2019 data). Despite similar symptom triads, fatigue prominence varied and psychosocial needs were heightened in Africa. Structural determinants included health-system robustness, stigma, workforce capacity, and social safety nets, underscoring the primacy of patient-reported priorities.

A pediatric hematologist unpacks why sickle cell disease burden, treatment access, and pain outcomes differ across sub-Saharan Africa, other LMICs, and HICs.

Addressing Global Care Gaps in Sickle Cell Disease, With 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 

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. 