Health
Ugandan sickle cell researchers keep pace with aging patients
Article courtesy Fogarty International Center
September/October 2024 | Volume 23 Number 5
Until recently in Uganda, most children with sickle cell disease (SCD) never celebrated their fifth birthday—only 30% lived past this milestone. This low survival rate was mainly due to inadequate health care interventions for these children, plus lack of widespread newborn screening, explains Dr. Sarah Kiguli , a professor at Makerere University College of Health Sciences. Things are different today. Over the past decade, the East African nation has instituted a policy of screening newborns while strengthening strategies to manage their health. This means more children with SCD are growing into adolescence and adulthood.
Challenges still exist, says Kiguli. For example, the community and district facilities where many Ugandan children are born cannot provide comprehensive services, including newborn screening. Another issue: the risk of SCD complications related to kidneys, lungs, heart—almost all organs—grows higher as patients grow older, yet scientific research in Uganda hasn’t caught up with the reality of these longer lives. As a result, teens and adults with SCD don’t get “the care they deserve,” says Kiguli.
“It’s very painful for us pediatricians to see our patients encounter challenges and problems when they transition to adult care.”
Renewed research focus
Despite years devoted to children’s health, Kiguli believes it’s time to prioritize studies exploring appropriate SCD management in teens and adults. “We need solutions that address all the patients’ needs, including reproductive health, as they transition out of childhood.” She’s spearheaded a multidisciplinary research training program for researchers focused on the needs of people with SCD at all ages: Enhancing Research capacity for Sickle Cell Disease and related NCDs across the Lifespan in Uganda (ENRICH).
“Among our PhDs, we don’t have anyone from pediatrics—and that’s fine,” says Kiguli. Importantly, the researchers are trained as a group to amplify the benefits of multidisciplinary collaboration. “We’ve been working in silos—pediatricians alone, physicians alone, social scientists alone—that won’t help us address the comprehensive needs of these patients.”
Methodology has also been given sufficient consideration. “We provide both individual and team mentorship from the beginning,” said Kiguli. Monthly meetings help trainees develop personal development goals and career path plans in the hope they will continue in the field. The program also provides research training to health professionals, such as medical doctors, laboratory personnel, and nurses, who are not necessarily doing degree programs, “so those who manage patients routinely might also benefit,” said Kiguli.
South-to-South unity
For the project, Makerere University has partnered with Busitema University, located in eastern Uganda, where “prevalence of the sickle cell trait is as high as 20%,” says Kiguli. (Sickle cell trait refers to when a person has inherited one mutated allele of the sickle cell gene, not two.) This local prevalence contrasts with about 13% prevalence elsewhere in the country. Studying the disease in a high burden locale is highly relevant, because results may influence policy and treatment guidelines.
Kiguli has other reasons for collaborating with Busitema University, which is less than 15 years old. “We want to build capacity at this young institution since our colleagues there have less chance of doing research than we at Makerere do.” Working and supervising trainees together will give Busitema’s faculty much-needed experience, while providing opportunities for faculty at both universities to learn from each other. Kiguli also hopes the new collaboration will advance progress made as result of the universities’ past partnerships. “Capacity must be built in a sustainable way,” says Kiguli.
“It’s important to work collaboratively and not competitively—this is just as important for Makerere University as it is for Busitema University.”
ENRICH trainees talk about their projects
Dr. Jackline Akello
Dr. Jackline Akello, PhD candidate
Dr. Jackline Akello, PhD candidate
My project is “Sickle cell disease in pregnancy: Experiences in provision and access to care and adverse pregnancy outcomes at Mbale and Kawempe Referral Hospitals.” As an obstetrician and gynecologist, I work as a lecturer at Makerere University and provide clinical care at the two national referral hospitals. I have encountered significant challenges in managing pregnant women with sickle cell disease (SCD) due to a number of healthcare navigation challenges. Additionally, the diverse cultural beliefs associated with SCD in Uganda affect access to care and ultimately outcome and quality of life for the patient.
By October, I will have started the enrolment of 161 pregnant women with confirmed SCD for my project. These participants will be followed throughout their pregnancies to track maternal and fetal complications, including stillbirths and low birth weight. Their experiences with the healthcare system will also be explored. As a Safe Motherhood champion, I have been focusing on hypertensive disorders in pregnancy, including pre-eclampsia, but this October at the Safe Motherhood Conference I will discuss the effects of SCD during pregnancy with the Ministry of Health. One of the endpoints of my study is to improve care for pregnant women who have SCD to enhance their pregnancy experience and outcomes.
Dr. George Paasi
Dr. George Paasi, PhD candidate
Dr. George Paasi, PhD candidate
My project is “The Clinical Epidemiology, Spatiotemporal Patterns and Disease Modifiers of Severe Malaria among Children with Sickle Cell Disease in Eastern Uganda.” Uganda ranks fourth among countries with high burden of SCD and is in the top 10 with respect to malaria burden. Eastern Uganda has the highest burden of both diseases. My project addresses this dual burden of SCD and malaria in eastern Uganda—I want to decipher the SCD-malaria syndemic in this region.
I’m a medical doctor, I have a master’s in public health, and I just finished a fellowship in infectious disease, epidemiology, and biostatistics. I’ve worked at Mbale Clinical Research Institute for the last 10 years. Previously, I worked on an NIH-funded trial in Africa called Realizing Effectiveness Across Continents with Hydroxyurea (REACH) as a medical officer, and now I’m embarking on this PhD training. My hope is that the findings from my study will improve the identification of patients with SCD at risk of adverse outcomes when they get malaria. I also want to identify, through spatial temporal analysis, hotspot locations that require priority interventions. I also want to gain skills as an independent researcher in SCD and make a meaningful contribution to this field.
Dr. Anita Arinda
Dr. Anita Arinda, PhD candidate
My project is “Prevalence, associated factors, course and impact of major depressive disorder in adolescents with SCD in Mulago National Referral Hospital.” We have limited data on mental health of adolescents with SCD, so that’s why my project mainly looks at depression in adolescents (ages 10 to 17).
In our setting, we are fortunate that children with SCD live past their fifth birthday thanks to improved health care, but this presents new challenges. During adolescence, patients enter a crucial stage where they’re trying to develop their identity, yet they’re also beginning to understand the implications of their condition—that having this serious health condition cuts their life short. I want to understand their experiences. How does depression in adolescents with SCD differ from depression in adolescents without SCD? We know that sickle cell disease causes inflammation, so does that contribute to their depression? How does depression affect clinical outcomes, if at all?
If we can understand the underlying mechanisms of depression in teens with SCD, then we might find new ways to manage their care (as opposed to conventional treatment with antidepressants). I’ll do my research at Mulago National Referral Hospital, which has a clinic dedicated to children and teens with sickle cell disease. The clinic provides many services, but unfortunately no specialized mental health services. One day I hope that changes, so that children with SCD and depression can get help early.
Nearly half of Uganda’s prison population has latent tuberculosis (TB), according to the latest Uganda National Prevalence Survey on Tuberculosis, HIV, and COVID-19. The survey, released on May 15, 2025, found that active TB cases in prisons stand at 1,900 per 100,000—eight times higher than in the general population.
The survey was conducted by Makerere University School of Public Health (MakSPH) in conjunction with the Uganda Prisons Services (UPS) and the Ministry of Health—with funding from the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) and technical support from the U.S. Centers for Disease Control and prevention (CDC)—and purposed to have a more profound understanding of TB to help inform public health programs for this high-risk population.
Dr. Simon Kasasa, a Senior Lecturer at MakSPH and Principal Investigator of this study, stressed that “staying for a longer duration, three years and above, posed a greater risk to TB infection in prison.” He also noted TB infection was much higher among male prisoners (48%) compared to female prisoners (38%) and among those of older age, 65 years and above. Meanwhile, the report noted concerns about excessive numbers in prisons as a key risk factor for TB transmission.
UPS consists of 257 prisons spread over 16 administrative regions with an average prisoner population of 56,400 (95% male), accommodation capacity of 16,612 (340%), and 9,904 staff (29% female).
HIV prevalence among prisoners was also alarmingly high at 11%, twice that of the general population. Notably, female persons in prison (PIP) had the highest HIV rates at 21%, compared to 11% for male PIP and just 2% among prison staff. However, the data also showed a significant drop in overall HIV prevalence within prisons, falling from 15% in 2013 to 11% in 2023, with the most dramatic decline among staff, from 12% to 2%.
Dr. George Tumusinze, a Program Manager and Research Associate, pointed out that although 92% of people with HIV in prisons know their status and 99% are receiving antiretroviral therapy (ART), only 70% have successfully reduced the virus in their bodies, highlighting important issues with how well the treatment is working.
Mr. Samuel Akena, the Deputy Commissioner General of Prisons, echoed these concerns by stating that the survey represents a significant milestone for the Prisons, not only in terms of data collection but also in Uganda’s journey towards achieving equity, justice, and the right to health for all. “This survey is historic. It represents one of the most comprehensive efforts to understand the health status of people in prisons in Uganda.” He emphasized the necessity of a collective and bold response, urging that “the time for piecemeal responses is over.”
Dr. Charles Olaro, Director General of Health Services at the Ministry of Health, emphasized the urgency of the situation, stating, “As we gather today to reflect on the findings of this important survey, we must recognize the urgent need for action in our fight against tuberculosis (TB) in Uganda. Despite our efforts, we are still grappling with the burden of this disease, and our progress toward eliminating it by 2030 has not been as swift as we had hoped.” He pointed out that the survey serves as a critical baseline that will shape future responses and guide resource allocation.
HIV prevalence among prison staff members was the lowest, at just 2%, reflecting a significant achievement in workplace health. Dr. Daniel Byamukama, Head of HIV Prevention at the Uganda AIDS Commission, praised prison authorities for their efforts, noting the remarkable progress over the past decade. In the first survey in 2013, only 34% of HIV-positive staff on treatment had achieved viral load suppression. Today, that figure has reached an impressive 100%, underscoring the impact of sustained prevention and care efforts.
While the prison HIV program has shown effectiveness—evidenced by a drop in prevalence from 15% to 11% among the prisoners over the past decade—Mr. Akena stressed the importance of prioritizing gender-responsive strategies in health interventions.
“Diseases do not recognize bars or borders. They thrive in environments where conditions are poor and resources are scarce. Women in prison face disproportionately higher risks, yet often remain invisible in program planning. This is not acceptable. If we are serious about health equity, we must prioritize gender-responsive strategies — within prison health systems and beyond,” Mr. Akena.
CDC Uganda Director Dr. Adetinuke (Mary) Boyd reinforced the significance of the survey in addressing public health risks. “In Uganda, CDC partners are helping to ensure inmates stay healthy during custody. This work facilitates safe reintegration into their communities, mitigates disease transmission to the general population, and reduces public health risks like untreated TB,” she stated. Dr. Boyd highlighted the role of PEPFAR in tackling critical global health threats, asserting that the survey offers helpful data for enhancing health collaboration within this vulnerable population.
The U.S. CDC has been supporting Uganda Prisons Services to provide comprehensive HIV/AIDS, STI, and TB prevention, care, and treatment services for the last 15 years (2010–2025), totaling over $18,046,263 in investment—including $550,000 to this study alone, through the Makerere University School of Public Health. The program supports capacity building, scale-up, and health system strengthening efforts in HIV/TB testing, care, and support for prisoners and prison staff, plus surrounding communities.
With 80% of prison wards overcrowded and 95% lacking adequate natural ventilation, the conditions in which these individuals live exacerbate the spread of infectious diseases, public health specialists have warned. This survey underlines the urgent need for systemic changes within the prison health system, as well as a commitment to uphold the rights and health of all individuals, regardless of their circumstances.
As Uganda grapples with these alarming statistics, the call to action is clear. Stakeholders must come together to implement effective health interventions, improve screening and treatment protocols, and ensure that the rights of incarcerated individuals are respected. The health of the general population is inextricably linked to the health of those within prison walls, and addressing these challenges is not just a moral imperative but a public health necessity.
Professor Rhoda Wanyenze, one of the investigators and Dean of the School of Public Health, asserts that the Survey findings are a wake-up call for stakeholders to prioritize health equity and justice for society’s most vulnerable members.
Prof. Wanyenze advocated for improved TB screening methods and institutionalization of regular mass TB screening using the WHO-recommended advanced diagnostic tools like digital chest X-rays with Computer-Aided Detection (CAD), as well as molecular diagnostics like GeneXpert and TB LAM, noting that traditional symptom-based screening missed nearly half of TB cases. “The use of molecular diagnostics like GeneXpert significantly improved case detection in our study,” she added, emphasizing the importance of timely diagnosis and treatment.
Uganda Prisons Service, in partnership with the Ministry of Health, has so far installed 14 GeneXpert machines in medium- to high-volume prison health facilities.
While some, including Members of Parliament, have raised concerns about the potential infringement on individual rights through mandatory TB testing in prisons, Dr. James Kisambu, the Commissioner for Prison Health Services, noted that it is now apparent, with these findings, for everyone to appreciate that in such confined settings, the risk of transmission is extraordinarily high. TB testing in these settings is not just a medical practice but also a crucial public health precaution that protects both prisoners and the wider community.
“Prisons are high-risk, high-transmission environments where one undetected case can rapidly escalate into an outbreak. In such settings, the right to refuse testing must be weighed against the right of others to be protected from infection. Mandatory TB screening, when done with dignity and linked to prompt treatment, is not a violation of rights — it is an essential public health measure to protect both people in prison and the communities they return to,” said Dr. James Kisambu.
The researchers from MakSPH were; Dr. Simon Kasasa, Associate Professor Esther Buregyeya, Dr. George Tumusinze, Dr. Simon Walusimbi, Dr. Dick Kasozi, Dr. Ronald Senyonga, John Baptist Bwanika, Prossy Nabaterega and Professor Rhoda Wanyenze.
Additionally, the study team from the Uganda Prisons Service comprised of Dr. Leonard Marungu, Charles Butagasa, Dr. James Kisambu and Dr. Johnson Byabashaiza, the Commissioner General of Prisons.
Finally, Dr. Deus Lukoye, Dr. Julius Ssempiira, Charles Kavuma, Rise Nakityo, Samuel Sendagala, Grace Nantege, Lisa Mills, Dr. Lisa Nelson, Kenneth Mwambi from U.S. CDC Uganda/Atlanta and PEPFAR USG agencies, and George William Kasule, Didas Tugumisirize, Dr. Simon Muchuro, Professor Moses Joloba, Dr. Turyahabwe Stavia from the Uganda Ministry of Health National TB and Leprosy Program (NTLP) completed the team.
On April 23, 2025, Makerere University School of Public Health (MakSPH) convened district leaders, health managers, and project partners to disseminate the outcomes of a major leadership and management strengthening initiative in Wakiso District, Central Uganda. The one-year project, part of the Global Health Partnerships programme funded by NHS England, was implemented in collaboration with Nottingham Trent University, Nottingham University Hospitals NHS Trust, Wakiso District Local Government, and Uganda’s Ministry of Health.
Launched in 2024, the project titled Strengthening Leadership and Management Among Local Government Health Managers in Wakiso District, aimed to co-design and pilot a leadership and management training tailored to the realities of Uganda’s decentralised health system. The intervention, led by Makerere University’s Dr. David Musoke and Nottingham Trent University’s Prof. Linda Gibson, through the over 15-year-old NTU-Mak Partnership impacting lives in Wakiso, began with a field visit to over 60 public health facilities in the district, a needs assessment within these facilities to identify key priority gaps, and a baseline survey with the health in-charges to establish the initial status of key indicators.
“We have been very fortunate to work with a supportive local government in Wakiso, from the top leadership down. While many projects struggle to engage district teams, our longstanding relationship with Wakiso made collaboration seamless. Although this was our first initiative specifically focused on leadership and management, we hope it will serve as a stepping stone for even more impactful work in the future,” Dr. David Musoke, a Senior Lecturer at Makerere University and the Uganda Project Lead, said during the dissemination workshop, highlighting the key success factors for the leadership and management project.
Initial results from the needs assessment and baseline on leadership and management competencies conducted among Wakiso District health facility supervisors early last year by the project team and shared during the three-day workshop in June 2024, held in Kampala, which kickstarted the six-month structured fellowship programme for 53 health managers in Wakiso, had found critical capacity gaps. Using a tool evaluating 17 leadership and 33 management competencies, only 40% of the managers met the 80% benchmark for leadership, scoring highest in cognitive skills, while just 33% met the required management standard, performing best in self-management and lowest in quality management.
Then, the health facility managers with postgraduate training, longer service, and strong team dynamics, showed overall better performance. While working relationships with subordinates and the district leadership were largely positive, performance was hampered by systemic challenges such as limited resources, low motivation, and weak teamwork. Overall, the study also pointed to a misalignment of expectations between the District Local Government and the Health Ministry, underscoring the need to strengthen coordination to improve services.
The result of this mismatch was to the effect that, as of this time last year, Wakiso District ranked among the bottom 10 on the national health league table, which is an annual Ministry of Health assessment of district performance across key service delivery and patient satisfaction indicators. This was despite Wakiso being Uganda’s most populous district, with over 3.4 million residents today, as it continued to struggle to deliver essential health services to the public. The 2022/2023 Annual Health Sector Performance Report also flagged persistent challenges, including frequent transfers of facility in-charges, overstretched management structures, and weak internal communication and coordination.
It was this stark reality that informed the leadership and management intervention in Wakiso. Officiating the dissemination of the project outcomes, Dr. Sarah Byakika, Commissioner for Planning, Financing, and Policy at the Ministry of Health and a member of the National Oversight Mechanism for the programme, commended the remarkable progress made in just six months, citing visible improvements across the district as a direct result of the intervention.
“I have been involved with this programme right from its inception, and I’m proud that Uganda became one of its major beneficiaries,” Dr. Byakika said with gratitude, commending the strong collaboration between the Ministry of Health, Makerere University, Nottingham Trent University, Nottingham University Hospitals, Wakiso District and the development partners for supporting the initiative. She emphasised the value of this partnership in strengthening leadership and management competencies among Wakiso District health managers to address critical performance gaps in health service delivery.
“Wakiso is Uganda’s largest and most populous district, yet it has long underperformed on key health indices. Despite its semi-urban nature, it faces enormous health service delivery challenges, partly due to the overwhelming burden on its District Health Officer, who oversees more than 60 public and over 340 private health facilities. Many of these private facilities open and close frequently, complicating service oversight,” Dr. Byakika observed with concern.
Her sentiments were echoed by the District Health Officer, Dr. Emmanuel Mukisa, in a message delivered by Wakiso District Biostatistician, Mr. Frank Kakande. He noted that the project had contributed to a noticeable shift in the district’s health system performance, with visible improvements in leadership, communication, and accountability among facility in-charges beginning to translate into better overall health service delivery outcomes.
“You cannot talk about management without addressing performance: they go hand in hand. As someone who sits at the centre of district health data, I can confidently say that performance has improved. During the most recent national local government performance assessment, where I participated in the evaluation, Wakiso District’s health department ranked 18th out of 146 districts. That health ranking is a major achievement. We have consistently performed poorly in the past, but this time, we made significant progress,” Mr. Kakande told the attentive audience, speaking with an air of relief and satisfaction.
The Wakiso District Biostatistician credited part of this progress within the district, from the poor performance last year, to the leadership training and mentorship delivered through the project, citing visible improvements across key health indicators. He stressed the need to sustain this momentum through continued mentorship, internal capacity strengthening, and consistent application of the skills acquired by health managers, particularly in tackling persistent management challenges such as absenteeism, delegation, and accountability.
“Last week, I held a performance review at Kakiri Health Centre III, and the improvements were clear. These management skills are making a difference. You can see the change across indicators. But what matters now is sustainability. The support provided through supervision and mentorship was essential. But it’s up to us to keep the fire burning. We have learned a lot: communication skills, problem-solving, time management, and decision-making. Managers are now communicating better. Even issues like absenteeism are being addressed through proper reporting and action,” Mr. Kakande said.
Earlier, Dr. Musoke, presenting the overall project overview and success, explained that based on initial findings from the baseline and needs assessment, the team co-designed and delivered a structured six-month capacity-building programme targeting 60 health facility in-charges in Wakiso District. The programme blended in-person and virtual sessions, combining practical training with one-on-one mentorship, and included an exchange component between Uganda and the UK to promote international exposure and peer learning. This allowed the health managers to apply new skills to strengthen health outcomes in Wakiso.
“This project rightly focused on addressing gaps in leadership and management. I advocated for including this component in the programme, because our national health review missions consistently show that poor performance often stems from weak leadership and management,” Dr. Byakika affirmed, adding that: “I am pleased to see that nearly all public facilities in Wakiso participated. While the project had a short implementation window, the evaluation already shows encouraging results. Health managers feel more empowered, motivated, and aware of their roles. That’s a significant step.”
For her part, Dr. Sheba Gitta, Uganda Country Director for Global Health Partnerships, formerly Tropical Health and Education Trust, applauded the leadership and management capacity-building initiative in Wakiso as a timely, locally driven intervention. She underscored the value of two-way learning between Uganda and the UK health systems through the programme, noting that Global Health Partnerships works closely with the Ministry of Health to ensure all funded initiatives align with Uganda’s national development priorities.
“What excites me most is that this was not a pre-packaged programme imported from the UK. The training was co-created by partners, based on local realities and needs. That approach reflects strong collaboration between Makerere University School of Public Health and Nottingham Trent University. I thank Prof. Linda Gibson for her continued commitment and Dr. David Musoke for his proactive leadership in bringing this programme to life. Your consistency and quality of work continue to stand out,” Dr. Gitta shared.
While commending the progress made, she cautioned against “pilotism”, as a tendency for promising projects to end prematurely, calling for the model to be scaled up nationally. To support sustainability, she stressed the importance of documenting the training process, outcomes, and costs to inform ministry-level decision-making and long-term adoption.
Dr. Gitta joined Prof. Linda Gibson, the UK Lead for the Project, to encourage the trained managers to become champions of leadership within their facilities and districts, ensuring that the impact of the programme endures beyond its current cycle. She also thanked NHS England and the UK Government for their trust and investment in Uganda’s health system.
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