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.
Health experts from across Africa have called for stronger use of routine health data in planning, supervision and service delivery, noting that although countries are generating large amounts of health information, much of it is still not being used.
The call came during a webinar hosted by the Makerere University School of Public Health (MakSPH) in partnership with The Global Fund under the theme “From National Dashboards to District Action: Strengthening Subnational Data Use for Planning, Supervision and Service Delivery.”
The webinar brought together health information specialists, policymakers and practitioners from Uganda, Kenya, Zimbabwe and Ethiopia to share experiences and lessons on using subnational data for evidence based decision making.
Kenya’s journey from data collection to action
In her keynote address, Dr Helen Kiarie, Head of the Monitoring and Evaluation Division at Kenya’s Ministry of Health, urged health practitioners and policymakers to move beyond routine reporting and use data to improve health outcomes.
“The bottleneck is no longer collecting data. It is turning routine data into decisions and decisions into action,” Dr Kiarie said.
Drawing on Kenya’s experience, she pointed to the country’s shift from paper based reporting systems to digital platforms, noting that more than 95% of public health facilities have been digitised.
According to Dr Kiarie, Kenya has developed National Data Analytics Guidelines to support evidence based decision making across the health system. The guidelines set out a structured approach to data analysis, interpretation and dissemination so that the information generated can be used.
She said building a culture of data use requires leadership that asks for evidence, regular performance reviews, public dashboards, mentorship programmes, and the integration of data into planning and budgeting.
Community data improving maternal health
Dr Kiarie gave practical examples of how data can shape health outcomes.
In Kwale County, community health promoters used household level data to identify and follow up pregnant women, encouraging them to attend antenatal care services and deliver at health facilities.
As a result, skilled birth attendance increased from 50 per cent in 2022 to 85 per cent, while reported home deliveries fell from 808 to 248.
She also pointed to Kenya’s efforts to link digital health data with health financing systems, saying better documentation and data quality have strengthened accountability and increased reimbursements to health facilities.
She added that real time maternal and perinatal death surveillance systems are helping health authorities identify gaps in care, assign responsibility and take corrective action to prevent avoidable deaths.
“Data has moved beyond documenting losses to becoming an instrument for preventing the next avoidable death,” Dr Kiarie said.
Addressing data quality challenges
Despite major investments in digital health systems, Dr Kiarie acknowledged that data quality challenges remain.
She cited system downtimes, the parallel use of paper and digital records, limited access to some digital platforms, and resistance to change among some health workers as barriers to data quality and use.
Still, she said Kenya’s data quality has improved considerably through digitisation and continued investment in governance, analytics capacity and quality assurance.
Regional experiences and lessons
The webinar also included a panel discussion with experts from Uganda, Zimbabwe and Ethiopia, who shared experiences on strengthening data use at district and facility level.
The discussion pointed to the importance of strong leadership, timely information, digital infrastructure and feedback mechanisms that help health workers and managers make informed decisions with the data available.
Participants agreed that health information systems should do more than serve as reporting tools. They should also support decision making where services are delivered.
Moving from information to impact
Speaking during the webinar, Prof. Rhoda Wanyenze, Dean of Makerere University School of Public Health (MAKSPH), commended countries for progress in strengthening health information systems and encouraging data use.
She urged practitioners and researchers to go beyond documenting challenges and start capturing examples of how data informed decisions are improving programmes and health outcomes.
“It would be really good for us to dig deeper in terms of what decisions we have actually made and what we would not have known or done differently if we did not have the data,” she said.
In his closing remarks, Dr Wodimu Ayele of The Global Fund said the value of data lies in its ability to improve service delivery, inform decision making and strengthen accountability.
He called on countries to keep investing in data quality, analytics capacity and health information systems, while making sure evidence generated at all levels leads to measurable improvements in health outcomes.
Uganda has released the preliminary findings of the 2025 Uganda Population-Based HIV Impact Assessment (UPHIA 2025), a national household survey that provides a current picture of the country’s HIV response and selected non-communicable disease indicators.
At the Uganda Media Centre today, 1 October 2026, the Minister of Health, Hon. Dr Chris Baryomunsi, released the preliminary results and said the evidence would guide policy, resource allocation and service improvement, with particular attention to people and communities with the greatest gaps. He urged Ugandans to know their HIV status, use prevention services and, when diagnosed, start treatment promptly and adhere to it.
Among adults aged 15 years and above, HIV prevalence was 5.9 percent, including 7.3 percent among women and 4.1 percent among men. Among adults aged 15–64, prevalence was also 5.9 percent, unchanged from 2020/21. Across the country, prevalence ranged from 1.3 percent in Karamoja to 8.0 percent in the South Western region. Of adults living with HIV, 85.3 percent knew their status; 99.1 percent of those aware were on treatment; and 96.5 percent of those on treatment had achieved viral load suppression. HIV-status awareness remains the central gap in the 95-95-95 cascade.
The survey also measured selected non-communicable disease indicators for the first time. Elevated blood pressure affected 15.5 percent of adults, while 24.8 percent had overweight or obesity and 0.9 percent had raised blood glucose.
Conducted from July to September 2025, UPHIA 2025 was the first population-based HIV impact assessment to be fully country-led. The Ministry of Health provided overall leadership, while Makerere University School of Public Health served as the prime implementing organisation, working with UVRI, UBOS, regional referral hospitals and local governments. PEPFAR funded the survey through the U.S. CDC.
Watch the UPHIA 2025 preliminary results launch:
https://www.youtube.com/live/QfHFBaJ-L-w
Read the UPHIA 2025 summary results:
https://drive.google.com/file/d/1nElGNwgcAcZyAo9CLCQKRpO2jJgyxjSc/view?usp=drive_link
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