Dr. Sarah Kiguli of Makerere University leads the Fogarty-funded program: Enhancing Research capacity for Sickle Cell Disease and related NCDs across the Lifespan in Uganda (ENRICH).
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
Photo courtesy of 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
Photo courtesy of 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 ArindaPhoto courtesy of Anita Arinda
Dr. Anita Arinda, PhD candidate
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.
Dr. Angelina Mwesige Kakooza, Associate Professor of Paediatrics in the Department of Paediatrics and Child Health, School of Medicine, Makerere University College of Health Sciences (MakCHS) received the 2025 TWAS-Fayzah M. Al-Kharafi Award in Medical Sciences. She was recognised for her research on neurodevelopmental disorders – particularly epilepsy, cerebral palsy, and nodding syndrome – and for advancing policy and research, mentorship, as well as local community interventions to enhance children’s health.
The award was given at the recent 17th General Conference of The World Academy of Sciences (TWAS) held in Rio de Janeiro, Brazil under the theme ‘Building a Sustainable Future: The Role of Science, Technology, and Innovation for Global Development.’ Organized in partnership with the Brazilian Academy of Sciences (BAS) and TWAS, the conference brought together leading scientists, policymakers, and institutional leaders from across the global South and beyond.
In her remarks after receiving the award, Dr. Kakooza said, “This award highlights the importance of neurodevelopmental disorders which are a great health problem worldwide, often diagnosed late and treated poorly,” said Kakooza. “It affirms my contribution to science in Africa, strengthens advocacy for gender equity in science and education and makes me a role model for others, increasing my influence in the scientific community.”
Associate Professor Angelina Mwesige Kakooza.
Dr. Angelina Kakooza Mwesige is a Ugandan scholar with over 25years teaching experience whose research focuses on neurodevelopmental disorders in children centred on their epidemiology, early screening, identification and community based interventions in Uganda. Her current areas of research cover studies on early detection and interventions for young infants at high risk of neurodevelopmental delay and disability in Nepal and Uganda; development of community engagement projects to empower adolescents living with epilepsy in Uganda reduce stigma in their communities; as well as development and testing of an interactive epilepsy smart phone application to improve resilience among them.
TWAS is a global merit-based science academy based in Trieste, Italy, and administered as a UNESCO Programme Unit. Read more here: https://twas.org/
In July this year, I joined a study tour to Imvepi Refugee Settlement in Uganda’s West Nile region under the RISK-WASH Project, led by Dr. Richard Mugambe. Established in 2017 in what is now Terego District, Imvepi is one of several settlements created to host people fleeing conflict in neighbouring South Sudan. Now home to more than 60,000 refugees, it reflects Uganda’s progressive refugee policy, anchored in the 2006 Refugee Act, which promotes the integration of displaced families within host communities, allocates land for livelihoods, and ensures access to national services. It remains a model both commendable and instructive for the region.
With nearly two million refugees and asylum seekers, most of whom are women and children, Uganda stands among the world’s leading examples of inclusive, community-based refugee protection. The RISK-WASH Project, implemented by the Makerere University School of Public Health (MakSPH) in collaboration with IHE-Delft, BRAC, and icddr,b, with support from the Dutch Ministry of Foreign Affairs, organised the three-day visit. The project builds evidence for better Water, Sanitation, and Hygiene (WASH) decision-making in humanitarian settings, developing practical tools to assess how exposure to unsafe water, poor sanitation, and environmental hazards affects the health of both displaced and host populations.
The RISK-WASH Project team, together with officials from the Uganda Red Cross Society, meet the Imvepi Refugee Settlement Commandant during a field visit in July 2025.
In Imvepi, that evidence takes human form. Water points run dry under intense demand or drought; latrines overflow during rains; fragile health systems strain to contain preventable diseases that flourish in such conditions. One nurse may attend to hundreds of patients in a single day, treating malaria, respiratory infections, and diarrhoeal diseases directly linked to inadequate WASH infrastructure. The images linger long after one leaves, especially when reflecting on the media’s role in shaping refugee narratives. What struck me most was how such realities are often reduced to statistics or fleeting headlines that reveal little about the lives behind them. I left Imvepi convinced that we, in the media, must not only report but listen differently.
When we cover refugees, we often begin with numbers. Yet behind every statistic is a heartbeat and a history the news cycle rarely pauses to hear. Refugee health, perhaps the most human measure of displacement, is still too often framed as a crisis rather than a continuum of resilience, policy, and rights. The World Health Organisation’s World Reports on the Health of Refugees and Migrants reminds us that refugees frequently experience poorer health outcomes than host populations, not because they are inherently vulnerable, but because access to care is often obstructed by law, language, and logistics. Health, like truth, then, becomes interestingly dependent on who is allowed to speak and who is heard.
Floods in Adjumani refugee settlement left shelters destroyed and water sources contaminated, heightening the risk of disease outbreaks and exposing the fragile health conditions faced by displaced families. Photo taken in 2024 during a MakSPH study on refugee health and climate change.
It was in this spirit that, on October 3, 2025, we convened the Media Training Workshop on Refugee Health and Migration Reporting at MakSPH. The one-day seminar brought together twenty journalists from Kampala, Kyaka II, Adjumani, and other refugee-hosting districts. Our goal was not to add another humanitarian angle to the news but to rethink how the media can report with depth, ethics, and empathy. Working with partners such as Africa Humanitarian Action, Emesco Development Foundation, and Farmamundi, we explored the subtle power the media wields to either dignify or diminish, to clarify or distort, the lived realities of refugees, particularly in the realm of health.
During my session, “Refugee Health Reporting as Empowerment: Negotiating Accuracy, Dignity, and Context,” I invited participants to view journalism through the lens of Paulo Freire, the celebrated Brazilian transformative educator who wrote the Pedagogy of the Oppressed while in exile in 1970. Through his influential work, Freire argued that oppression persists when those in power control language and narrative, when others are spoken for rather than heard. Liberation begins, he said, when people “name their world.” That principle remains profoundly relevant to our craft as journalism and communications practitioners. Refugees must not remain objects of our storytelling; they are its subjects. Journalism, in its truest public function, becomes liberating only when it is dialogic, when we report with people, not merely about them.
I led a session titled “Refugee Health Reporting as Empowerment: Negotiating Accuracy, Dignity, and Context” on October 3, 2025, framing it around Paulo Freire’s pedagogical philosophy of liberation through dialogue and critical reflection.
This transformation begins with accuracy. In Uganda, refugees share the same health system as host communities, one already strained by staff shortages, drug stock-outs, and donor fatigue. Yet many stories stop at official statements or NGO press releases. Limited access, shrinking newsroom budgets, and bureaucratic gatekeeping tempt journalists to rely on polished humanitarian narratives. But when we do, we risk becoming megaphones for the powerful. Accuracy demands courage, the willingness to verify, to cross-check, and to step beyond curated camp tours. In refugee reporting, truth is not just a professional standard; it is an act of respect.
Still, truth without dignity can harm. Too often, images of refugees serve as shorthand for despair—dust, hunger, tents. Such imagery may evoke sympathy, but it often strips away humanity. From practice, I have seen journalists lower their lenses before asking names. I have also seen how a small shift in approach, say seeking consent, giving space, and listening before photographing, can restore dignity to both subject and story. Words matter too. Calling someone an “illegal immigrant” or describing an “influx” of refugees turns people into problems. Language should humanise, not flatten. To describe refugees as mothers, health workers, or students is to reassert their agency and affirm our shared humanity, something Freire would have deeply valued today.
Media trainer Mr. Wilson Akiiki Kaija facilitates a session on “Centring Humanity” during the Refugee Health and Migration Reporting Workshop at MakSPH, underscoring the media’s role in advancing accuracy, dignity, and context in refugee reporting. October 3, 2025.
And no story exists in isolation. Every health headline in a settlement echoes across systems of policy, climate, economics, and gender. A cholera outbreak in Kyangwali is not merely a medical event or isolated incident; it may be showing broken sanitation infrastructure and the politics of aid, which may result in a national disease outbreak. Context is the soul of credibility. Without it, even accurate stories can mislead. In Imvepi, I saw first-hand that refugees’ health challenges are inseparable from Uganda’s own development journey, from how budgets are made to how global partners value African hospitality. The more connections we draw, the closer we come to the truth.
By the close of the workshop, it was evident that empowerment in journalism is not a slogan but a discipline. It demands patience, humility, and persistence. It calls for the co-production of stories, revisiting them, verifying them, and allowing refugees to narrate their realities. It also calls on institutions to invest and fund field reporting, train correspondents in trauma-sensitive and peace journalism, and protect journalists pursuing uncomfortable truths. Without such support, even good intentions dissolve into soundbites.
I often return to Freire’s words of wisdom: “To speak a true word is to transform the world.” This means that words are not just passive descriptions but powerful tools for action and social change, especially when they are paired with critical reflection and a commitment to praxis (work and action). Refugee health journalism, at its best, is precisely that kind of speech: accurate, dignified, and deeply contextual. It is not merely charity reporting; it is solidarity reporting. For anyone, given the wrong circumstances, can become a refugee. And solidarity, unlike sympathy, does not look down; it stands beside. When we write from that conviction, our stories do more than inform. They humanise, connect, and remind us that telling the truth well is, in itself, an act of justice.
From right: Africa Humanitarian Action’s Mr. Yakobo Kaheesi and Emesco Development Foundation’s Mr. Patrick Ssentalo join facilitators and organisers Mr. Wilson Akiiki Kaija and Mr. Davidson Ndyabahika in awarding certificates to media participants after the successful training on Refugee Health and Migration Reporting on October 3, 2025.
Dr. Annettee Nakimuli, an Associate Professor of Obstetrics & Gynaecology and Dean – School of Medicine at Makerere University College of Health Sciences was awarded by the International Federation of Gynaecology and Obstetrics (FIGO) for her outstanding contribution to improving the health of Women and children as a researcher and practitioner.
She received the award on the 6th Oct 2025 at the FIGO General Assembly/FIGO Congress that is ongoing in Cape Town, South Africa.
Professor Nakimuli is a leading maternal health researcher focused primarily on investigating the aetiology, treatment, prevention and long term outcomes of pregnancy complications among women in Sub-Saharan Africa. She is committed to building maternal and new-born research capacity in Africa and her aim is, with East African and International colleagues, to establish a multidisciplinary centre for African maternal and neonatal health research located at Makerere University in Uganda.