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.
A major milestone in Uganda’s efforts to reduce newborn mortality was marked on June 17, 2026, when Makerere University College of Health Sciences graduated the first cohort of fellows from the Perinatal and Neonatal Medicine Fellowship Programme.
The pioneering cohort of five specialists completed the two-year sub-specialty fellowship designed to equip pediatricians with advanced competencies in newborn care, leadership, research, advocacy, and neonatal intensive care. The programme is accredited by the Uganda Medical and Dental Practitioners Council and is implemented through a partnership involving Makerere University, Mulago Specialised Women and Neonatal Hospital, Kawempe National Referral Hospital, St. Francis Hospital Nsambya, Seed Global Health and Elma Philanthropies.
Speaking at the graduation ceremony, the Principal of the College of Health Sciences, Prof. Bruce Kirenga, described the occasion as a significant achievement for Makerere University and Uganda’s health sector.
“Today is a very important occasion for the College of Health Sciences, and indeed the health sector in Uganda,” he said, noting that the fellowship was established to develop highly skilled specialists capable of responding to increasingly complex healthcare needs.
Prof. Kirenga emphasized that Uganda’s changing disease patterns, increasing life expectancy, and growing demand for specialized healthcare services have created an urgent need for super-specialized training programmes. He challenged the graduates to use their newly acquired knowledge and skills to improve newborn health outcomes and save lives.
Addressing Uganda’s Neonatal Health Burden
Presenting an overview of the fellowship programme, the Head of the Department of Paediatrics and Child Health, Prof. Victor Musiime, highlighted the urgent need for specialists in neonatal care.
He noted that neonatal deaths, those occurring within the first 28 days of life, remain one of the leading contributors to child mortality in Uganda. The country continues to face a shortage of professionals with advanced skills in neonatal care, research, leadership, and advocacy.
“The demand for neonatologists remains extremely high,” Prof. Musiime explained, adding that the Ministry of Health envisions deploying neonatologists to regional referral hospitals and other health facilities across the country.
The fellowship programme was established to build a critical mass of neonatologists, strengthen care for high-risk newborns, develop expertise in advanced neonatal procedures, and produce leaders and advocates for newborn health.
A unique feature of the programme is its strong clinical apprenticeship model, complemented by international placements at leading institutions, including Yashoda Hospital in India and Aga Khan University Hospital in Nairobi, Kenya.
Ministry Commits to Expanding Neonatal Services
Representing the Ministry of Health, Commissioner for Maternal and Child Health, Dr. Richard Mugahi, congratulated the graduates and commended Makerere University and its partners for establishing the fellowship programme.
Dr. Mugahi revealed that the five graduates join another five neonatologists already serving in Uganda, bringing the country’s total number of neonatologists to ten. He described the locally trained fellows as a critical addition to Uganda’s healthcare workforce.
“The Ministry’s vision is to have a neonatologist at every Regional Referral Hospital,” he said, adding that Uganda aims to have at least 14 neonatologists by 2030.
He further outlined government plans to strengthen newborn care through the establishment of specialized neonatal care units at different levels of the health system, ranging from Health Centre IVs to Regional Referral Hospitals and super-specialized facilities such as Mulago Specialised Women and Neonatal Hospital.
Dr. Mugahi assured the graduates that the Ministry of Health is investing in equipment and infrastructure to support advanced neonatal services and pledged to advocate for improved career progression pathways for super-specialized health professionals.
Makerere’s Commitment to Advanced Medical Training
Representing the Vice Chancellor, the Deputy Vice Chancellor (Finance and Administration), Prof. Henry Alinaitwe, congratulated the fellows and their families on the achievement.
He praised the College of Health Sciences for its contribution to national development and noted that programmes such as the Perinatal and Neonatal Medicine Fellowship enhance Makerere University‘s position as a leader in knowledge generation and societal transformation.
Prof. Alinaitwe paid tribute to the graduates’ families, particularly their spouses and children, for supporting them through the demanding years of specialist training.
“The work you do is truly priceless,” he told the fellows. “The contribution you make to humanity is immeasurable.”
Graduates Hailed as Future Leaders in Newborn Health
In attendance were the director of Mulago Specialized Women and Neonatal Hospital, Dr. Sam Ononge, Deputy Director Mulago Referral Hospital, Dr. John Sekabira, Dr. Mary Nyanzi from Kawempe Referral Hospital, Sr. Dr. Assumpta Nabawanuka, the Director of St. Francis Hospital Nsambya, Dr. Irene Atuhaire from Seed Global Health Uganda and Ms. Ritah Akankwasa from ELMA Philanthropies Services, who partnered with the college in training the fellows.
The training partners described the graduates as pioneers who had demonstrated exceptional resilience and commitment throughout the rigorous training programme.
They applauded their contributions to patient care, teaching, mentorship, and supportive supervision, noting that their work had already contributed to improvements in maternal and newborn health services in Kampala and other regions of Uganda.
“As Kawempe National Referral Hospital, we have been privileged to witness your growth, not only as clinicians but also as leaders and advocates for newborn health,” Dr. Nyanzi said.
The graduates
- Dr. Tumwebaze Anita Kiiza Muhumuza
- Dr. Ediamu Tom Didimus
- Dr. Kezia Kibedi
- Dr. Hellen Kyokutamba
- Dr. Gerald Ojambo
For most people, the thought of death evokes grief, fear, or loss. But at Makerere University‘s College of Health Sciences, death became a lesson in gratitude, service, and humanity as students, faculty, and health professionals gathered to honour a unique group of teachers, individuals who continued to educate future doctors long after their passing.
At the Second Cadaver Commemoration Ceremony, on June 11, 2026, organized by the Makerere Students’ Anatomy Society, candles flickered softly as students paid tribute to what they fondly call their “silent teachers”, the human bodies that make it possible for medical students to learn anatomy and develop the skills that will one day save lives.
Standing before fellow students and guests, Chairperson of the Makerere Students’ Anatomy Society, Joseph Mwera, reminded the audience that the ceremony was not about mourning the dead.
“Today, we gather not only to remember those whose bodies have contributed to medical education but also to celebrate their lives,” he said. “Their legacy continues to inspire and serve humanity even after death.”
For many medical students, the anatomy laboratory is where they first encounter the reality of the profession they have chosen. Behind every lesson on muscles, nerves, blood vessels, and organs is a person who once lived, loved, worked, and contributed to society.
That reality was brought to life by the keynote speaker, Rev. Prof. Dr. Samuel Luboga, a surgeon, anatomist, and priest who spent nearly four decades teaching anatomy at Makerere University.
Reflecting on his own days as a medical student, Prof. Luboga recalled spending long hours in the anatomy laboratory after his classmates had gone home, studying human anatomy in detail.
Many people wondered whether he was afraid to spend so much time among cadavers.
His answer was simple.
“These men and women had lived productive lives. They had raised families, served their communities, and contributed to Uganda’s development. Even in death, they continued to teach us the science and art of medicine. They had earned my admiration, my respect, and my gratitude.”
His remarks resonated deeply with the students in attendance.
In a society where discussions about death and body donation remain sensitive, Prof. Luboga challenged participants to view the individuals in anatomy laboratories not as lifeless remains but as people who continue to contribute to humanity through education.
“The silent teachers before us today made learning possible,” he said. “The impact of their contribution is reflected in the doctors you have become and those you are yet to become. It is reflected in the countless patients you will treat and the innumerable lives you will save.”
Legal framework to guide body donation
The ceremony also sparked important conversations about the future of anatomical education in Uganda.
Head of the Department of Anatomy, Prof. Elisa Mwaka, highlighted the need for a national legal framework to guide body donation and anatomical research. While anatomy training in Uganda has traditionally relied on unclaimed bodies obtained through hospitals, he noted that many countries are increasingly embracing voluntary body donation programmes.
According to Prof. Mwaka, building public trust will be essential if Uganda is to establish a sustainable body donation programme.
“We must help the public understand how human bodies contribute to medical education, how they are treated with dignity, and how appropriate legal safeguards can protect donors and their families,” he said.
He revealed that discussions are already underway to develop an Anatomy Act that would provide a modern legal and ethical framework for the use of human remains in medical education and research.
Representing the Deputy Vice Chancellor (Academic Affairs), Prof. Julius Kikooma described the ceremony as much more than an academic event.
“Behind every competent healthcare professional stands an invaluable source of learning that often remains unseen and unheard,” he said. “These individuals taught us without speaking a single word. Though they are no longer able to communicate, their contribution continues to educate, inspire, and shape future generations of healthcare professionals.”
He commended the medical students for organizing what remains the only cadaver commemoration ceremony of its kind in Uganda, noting that the initiative reflects the values of compassion, professionalism, and respect for human dignity that are at the heart of medicine.
The event concluded with recognition of past and present leaders of the Department of Anatomy whose contributions have shaped anatomical education at Makerere University over the decades. Students also honoured exceptional educators who have inspired generations of future health professionals.
Yet the most powerful tribute of the day was reserved for those who could not be present to receive awards or applause.
The silent teachers
Individuals whose names may never appear in textbooks, whose stories may never be fully known, but whose gift continues to echo through hospital wards, operating theatres, and communities across Uganda.
Every doctor trained, every surgery performed, and every life saved carries a small part of their legacy.
And for one day at Makerere University, students paused to say the words that are rarely spoken aloud: Thank you.
-
Agriculture & Environment2 weeks agoPolicy Brief: Strengthening Climate Resilience and Livelihoods in Uganda’s Refugee and Host Communities
-
General2 weeks agoCHS Quality Assurance Guide Book
-
Law4 days agoMakerere hosts Chief Justices of Zambia and Uganda
-
Agriculture & Environment1 week agoMaster’s Scholars Engage Lwengo and Rakai Communities to Inform Research Conceptualisation
-
Research1 week agoMakerere University Rolls Out Thesis Completion Grants to Accelerate PhD Research and Strengthen National Policy Impact