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.
Through a European Union (EU) funded initiative, Makerere University and Mulago Hospital are hosting a German oncology reconstruction specialist Professor Dr. Thiha AUNG. AUNG is a surgeon, trainer at the Deggendorf Institute of Technology (THD), and researcher on cancer from the Deggendorf Institute of Technology (DIT), Germany.
With his international expertise in oncology and medical management roles at his home institution, his visit is a valuable addition to Uganda’s capacity building efforts in medical advancement.
Prof. Aung who arrived in Uganda in late September 2026 and has since then conducted free identified patient specialised surgeries and training for locals. These are expected to span two weeks. For the period, his service intersects medical expertise and humanitarian efforts.
This is not Prof. Aung’s first time in the country; his first major visit was in 2023, when he performed life-changing free surgeries on early patients. He then made medical history in June 2024 when he arrived to perform Africa’s first-ever lymph node transplant at Mulago Hospital.
It was against this background that the Makerere Public Relations Office engaged him in an exclusive interview to share his philosophy on medical service, his experiences in oncology reconstruction, and his unwavering belief that passion and dedication rather than just resources are the true drivers of sustainable medical progress.
Transforming Lives Through Oncology Reconstruction
At the heart of his mission through the ERASMUS – Oncology/Lymphedema project, is the treatment of lymphedema, a condition often referred to as elephantiasis.
In Europe, such surgeries can cost between 80,000 and 100,000 euros, making them inaccessible to many.
Thankfully, Professor and his team, including some of his post graduate students like Anna Friedrich (B.Sc) and Sophia Waser (B.Sc., PA) from the Institute of Medical Science and Engineering, have once again brought this specialised care to Uganda pro bono.
He highlights the story of a teacher who, after receiving surgery, regained her quality of life and returned to the classroom. For him, the impact is exponential. “You change one life, but this person changes a lot in the community.”
This shift from individual surgery to the long-term wellbeing of the community, reinforces the local impact of these services.
Professor AUNG’s Personal Conviction
The professor confessed that inherently, he commands himself that beyond knowledge, true progress is driven by passion and will rather than resources.
He does not agree with those that think money and resources are the sole prerequisite for change in the medical world, stating, “you cannot change with money only.” Rather, he upholds the importance of personal decision and commitment.
When discussing the challenges of working in resource-limited settings, he maintains a simple, direct explanation “it’s always beyond the money.”
Ultimately, the Professor believes that if he can provide the spark, his students and patients can carry through with the same flame for significant change.
Motivation to Serve in Uganda
When asked about his inspiration for entering the field and now volunteering to work in Uganda, he explained that his primary goal was always to serve others. “That’s why I finished my medical school to help as many people as possible with my skills.”
He views his medical expertise not as a tool for the privileged, but as a universal resource., “People are all the same, their anatomy is the same. So, I can help all these people pretty well,” Prof AUNG remarked.
His approach is motivated by a pay it forward dogma where treating a single patient creates a broader societal benefit. He illustrates this through his work with patients who, after surgery, are able to return to their professions like the teacher earlier mentioned.
Tips for Medical Professionals working in Uganda
As a foundation for professional growth, the Professor advised medical professionals working in Uganda to prioritise genuine interest in their work because he believes it is “the most important…” for “if you are interested, you will go far in the profession.”
He further reinforced the human capacity point, noting, “no matter what kind of equipment you have… it all depends on the people operating them and the patient.”
Professor AUNG concluded by encouraging doctors to overcome resource fears through action, stating, “If you want to create impact or change, you do.”
Dr. AUNG is part of the Lymphoedema Warriors Association (LWAU) in Uganda. He describes it as a grassroots organisation and commends them for “leveling the grond”. He reiterated his commitment to work with the organisation in reviewing patient reports to determine the best course of treatment.
Makerere University’s School of Public Health (MakSPH) showcased research, training and international partnerships supported through European Union funding during the EU Uganda Research and Study Fair 2026 held at Makerere University.
The fair brought together students, researchers, academics, government representatives and development partners to explore opportunities in education, research, innovation and international collaboration, while celebrating 50 years of partnership between Uganda and the European Union.
Through its exhibition, MakSPH highlighted research and capacity building initiatives addressing public health challenges including infectious diseases, non communicable diseases, health systems, climate change and pandemic preparedness.
18 EU funded projects supported at MakSPH
Prof. Rhoda Wanyenze, Dean of Students, School of Public Health, said the School has benefited from 18 EU funded projects over the past five years, supporting research and training across several areas of public health.
She said the projects have contributed to the training of PhD researchers and the development of research addressing infectious diseases and prevention, non communicable diseases, health systems, climate change and health.
Prof. Wanyenze also highlighted a new five year programme which started in 2021 that is aiming at strengthening capacity for research on pandemic preparedness and response, including outbreaks such as Ebola.
Another programme being undertaken with the Ministry of Health and Karolinska Institute focuses on improving maternal health while also addressing adolescent pregnancy and the health of mothers and children.
She described partnerships as critical to advancing science and innovation, noting that collaboration allows researchers in Africa and Europe to share knowledge and strengthen the impact of research on communities.
Research partnerships strengthen innovation
Prof. Robert Wamala, Director of the Directorate of Research, Innovation and Partnerships at Makerere University, said the exhibition provided an opportunity to showcase EU funded projects across the University.
He noted that the School of Public Health alone has more than 18 such projects, while other colleges also have several EU supported initiatives.
One of the projects showcased was PREPARE TID, a partnership aimed at developing rapid diagnostic technologies for emerging and re emerging infectious diseases.
Prof. Julius Okuni, Associate Professor of Veterinary Pathobiology and Molecular Diagnostics at Makerere University, said the project brings together universities, industries and other organisations from Africa and Europe.
The project is working to develop technologies that can quickly identify pathogens responsible for outbreaks such as Ebola, Rift Valley fever and Crimean Congo haemorrhagic fever.
According to Prof. Okuni, Makerere is involved in field and laboratory work to test and refine the technologies before they can be delivered to end users.
Fair provides platform for research visibility
For researchers at MakSPH, the fair also provided an opportunity to increase the visibility of ongoing research and create new connections with researchers, policymakers and potential funders.
Dr. Raymond Tweheyo, Honorary Lecturer and Senior Research Fellow in the Department of Health Policy, Planning and Management, said such exhibitions allow researchers to share their work and identify others working on related challenges.
He cited the CONNECT for Health project, which focuses on transforming non-communicable disease care in Uganda through collaboration with partners across several countries.
Dr. Tweheyo said exhibitions can help researchers connect with policymakers, civil society organisations and other partners who can contribute to translating research into practical solutions.
Assoc. Prof. Angelina Kakooza Mwesigye, Associate Professor and Child Neurologist at Makerere University College of Health Sciences, also emphasised the importance of exposing young people to international research opportunities.
She said the long standing Uganda Europe partnership provides opportunities for the next generation of researchers to learn, build networks and prepare for future research collaborations.
The School of Public Health’s participation highlighted the role of international partnerships in strengthening research capacity, supporting innovation and developing evidence based responses to Uganda’s public health challenges.
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