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Ugandan sickle cell researchers keep pace with aging patients

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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
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 Arinda
Photo 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.

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Makerere Medical Students Honour Their ‘Silent Teachers’

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Prof. Elisa Mwaka (L) presents a plaque to keynote speaker, Rev. Prof. Dr. Samuel Luboga at the Second Cadaver Commemoration Ceremony on 11th June 2026. Second Cadaver Commemoration Ceremony organized by the Makerere Students' Anatomy Society under the Department of Anatomy, College of Health Sciences (CHS) on June 11, 2026 at Makerere University School of Public Health Auditorium, Main Campus, Eastern Gate, Kampala Uganda, East Africa.

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.”

Prof. Elisa Mwaka (Centre) with Makerere Students' Anatomy Society members. Second Cadaver Commemoration Ceremony organized by the Makerere Students' Anatomy Society under the Department of Anatomy, College of Health Sciences (CHS) on June 11, 2026 at Makerere University School of Public Health Auditorium, Main Campus, Eastern Gate, Kampala Uganda, East Africa.
Prof. Elisa Mwaka (Centre) with Makerere Students’ Anatomy Society members.

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.”

Rev. Prof. Dr. Samuel Luboga. Second Cadaver Commemoration Ceremony organized by the Makerere Students' Anatomy Society under the Department of Anatomy, College of Health Sciences (CHS) on June 11, 2026 at Makerere University School of Public Health Auditorium, Main Campus, Eastern Gate, Kampala Uganda, East Africa.
Rev. Prof. Dr. Samuel Luboga.

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.

Prof. Elisa Mwaka. Second Cadaver Commemoration Ceremony organized by the Makerere Students' Anatomy Society under the Department of Anatomy, College of Health Sciences (CHS) on June 11, 2026 at Makerere University School of Public Health Auditorium, Main Campus, Eastern Gate, Kampala Uganda, East Africa.
Prof. Elisa Mwaka.

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.

Prof. Mwaka presents one of the awards. Second Cadaver Commemoration Ceremony organized by the Makerere Students' Anatomy Society under the Department of Anatomy, College of Health Sciences (CHS) on June 11, 2026 at Makerere University School of Public Health Auditorium, Main Campus, Eastern Gate, Kampala Uganda, East Africa.
Prof. Mwaka presents one of the awards.

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.

Part of the audience as seen from the gallery. Second Cadaver Commemoration Ceremony organized by the Makerere Students' Anatomy Society under the Department of Anatomy, College of Health Sciences (CHS) on June 11, 2026 at Makerere University School of Public Health Auditorium, Main Campus, Eastern Gate, Kampala Uganda, East Africa.
Part of the audience as seen from the gallery.

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.

Students perform during the Second Cadaver Commemoration Ceremony. Second Cadaver Commemoration Ceremony organized by the Makerere Students' Anatomy Society under the Department of Anatomy, College of Health Sciences (CHS) on June 11, 2026 at Makerere University School of Public Health Auditorium, Main Campus, Eastern Gate, Kampala Uganda, East Africa.
Students perform during the Second Cadaver Commemoration Ceremony.

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.

Betty Kyakuwa
Betty Kyakuwa

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Call for Applications: Master’s Sponsorship in Genomics and Bioinformatics for Pediatric HIV

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SURGE Project Call for Applications: Master’s Sponsorship in Genomics and Bioinformatics for Pediatric HIV. Photo: Gemini.

Makerere University in partnership with Baylor College of Medicine (BCM) and in collaboration with Baylor Foundation Uganda (BFU) is pleased to invite applications for a one-year Master’s sponsorship under the Scaling Up advanced genomics and bioinformatics Research training in Pediatric HIV/AIDS in Uganda (SURGE) project. This opportunity, funded by the National Institutes of Health (NIH) USA, is open to students currently enrolled in the Master’s Degree programme with a specialization in Genomics and Bioinformatics at Makerere University College of Health Sciences (MakCHS).

The SURGE programme aims to train the next generation of Ugandan scientists, supporting selected students through their dissertation year with a focus on pediatric HIV. You can find full details regarding this opportunity in the attached file.

Why Apply?

  • Support for dissertation research during the final year of your programme.
  • A monthly stipend for the 12-month duration of the sponsorship.
  • Hands-on training and mentorship in genomics, bioinformatics, scientific communication, and career planning.
  • Access to extensive host genetic datasets from African children infected with HIV and support for publishing research findings.

Eligibility:

This sponsorship is open to Ugandan nationals currently in their penultimate year (Year 1 or 2) of a Master’s programme with a specialization in Genomics and Bioinformatics at Makerere University. Candidates must have a cumulative GPA of at least 3.8 and a strong interest in pediatric HIV research.

How to Apply:

Please review the specific documentation requirements and formatting guidelines outlined in the attached file. Applications must be submitted as a single PDF file to surge.ug2030@gmail.com. Additionally, a reference letter from a person familiar with your academic work must be sent directly to the same email address by the referee.

The application deadline is June 30, 2026, at 5:00 pm EAT.

For any additional information, please contact the Program Manager at surge.ug2030@gmail.com. We look forward to receiving your applications.

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The silent teachers: why body donation matters

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Assoc. Prof. Erisa Sabakaki Mwaka, Consultant Orthopaedic Surgeon and Chair, Department of Anatomy, College of Health Sciences (CHS). Makerere University, Kampala Uganda, East Africa.

By Assoc. Prof. Erisa Mwaka and Joyce Nabukalu-Kiwanuka

In every hospital, there is a moment when knowledge becomes a matter of life and death. A doctor must know where to place an incision, how to avoid damaging major organs, how to identify a nerve, how to deliver a baby safely, how to interpret a scan, or how to explain disease to a worried family. That knowledge does not begin in the operating theatre, it begins much earlier, in the anatomy laboratory.

For generations, the study of the human body has been the foundation of medical education. The regular use of human bodies for medical training purposes began in the late Middle Ages and spread during the 18th and 19th centuries. Initially, anatomists depended on gallows, poor houses, mental asylums, or jails as sources of bodies. However, the 1960s and 1970s saw the emergence of wilful body donation. Before students become doctors, surgeons, dentists, nurses, physiotherapists, radiographers, and other health professionals, they must first understand the human body in its real form. They must learn not only from books and diagrams, but from the body itself. This is why cadavers, though silent, remain the most important teachers in medical education. In simple terms, a cadaver is a dead human body used by health professions students to study anatomy; and Anatomy is the study of the physical structure and organization of the human body, both at macroscopic and microscopic levels.

As the Department of Anatomy at Makerere University College of Health Sciences  prepares to commemorate the “silent teachers” whose bodies are used for medical education on June 11, 2026,  Uganda is invited to reflect on a subject that is rarely discussed in the public domain, willed body donation. Body donation simply means a person willfully donates their body for educational purposes after death, and consent to it in life. This is a sensitive topic, but it is also a deeply human one. It touches our beliefs, families, culture, understanding of death, and responsibility to future generations.This commemoration ceremony is not symbolic but, it is a public statement that the contribution of silent teachers is sacred, educational, and deeply appreciated.

To donate one’s body after death is not an ordinary decision; it is an altruistic act of extraordinary generosity. It is a final gift to society. It allows health professions students to learn and appreciate the human body before they treat living patients. Cadavers are therefore not “specimens”, they are silent teachers and partners in medical education who continue to serve humanity even after death. Learning anatomy using a cadaver helps students to understand and appreciate the complexity of the human body, appreciate its natural variations, and develop the confidence and competence needed to serve the public. Students are also taught laboratory etiquette that emphasises dignity, empathy, and utmost respect for the cadavers, which attributes they carry into the clinical years when they interface with hospital patients.

In Uganda, where the demand for health workers continues to grow, medical education must be strengthened at every level. Our country needs well-trained doctors and health professionals who can serve in hospitals, health centres, universities, research institutions, and communities. But good training requires good teaching resources. One of these resources are the silent teachers who never complain, but impart immeasurable knowledge to future health professionals. Modern technology has introduced many useful tools into medical education. Students can now learn from videos, computer applications, digital images, plastic models, three-dimensional models, and virtual platforms. These tools are important and should be embraced, however, they cannot completely replace learning from the real human body. A cadaver teaches what a diagram cannot fully show; the true position of organs, the texture of tissues, the relationship between structures, and the natural differences that exist from one person to another. More importantly, cadaver-based learning teaches respect. It reminds students that medicine is not simply a technical profession, it is a calling rooted in human dignity. The first lesson students learn in the anatomy laboratory is that the body before them belonged to a person who had a name, a family, a story, and a life. That lesson shapes how they later treat patients.

Currently, most, if not all universities in Uganda, and similar settings in Africa use unclaimed bodies for learning Anatomy. The use of cadavers in Uganda is governed by the Penal Code (Anatomy Rules) of 1957 that permits public hospitals to transfer bodies unclaimed for at least 14 days to a medical training institution like Makerere University. Unfortunately, these cadavers are used without the consent of the deceased because most of them are unknown and with no known relatives to claim them. Many opponents to the use of unclaimed bodies opine that the practice is unethical. There is a global push toward ethical use of cadavers in medical education, where a person consents and bequeathes his/her body for medical education when still alive. For this practice to be sustainable, there is a need for a well regulated body donation program. Unfortunately, the concept of willful body donation is still not well understood by many people, and neither has it been a topic of public debate. Further, there are lots of myths surrounding death and dying in Africa, including Uganda that have hindered the establishment of successful body donation programs. Willingness to donate bodies for medical education is however, influenced by several factors including cultural and religious beliefs, respect for the dead and the need to fulfil burial rites, fear for mutilation and disrespect, to mention a few. These concerns are real and should not be dismissed. But they should be addressed with accurate information, openness, and utmost respect.

It is important to understand that body donation does not mean that a person is forgotten. On the contrary, it creates a legacy. A body donor may teach hundreds of future health professionals, in that way, one person’s final act of generosity can touch and save countless lives.  This is kind of patriotism is largely unkown in Uganda and we do not speak about enough. We often talk about serving our country through leadership, business, farming, teaching, parenting, or community service. But there is also service beyond life. Body donation is one way of saying: “Even when I am gone, let me contribute to the health of my people.”

Currently, Uganda now has more than 15 universities training medical students and the demand for cadavers for learning anatomy is on the rise. Actually, the supply of cadavers cannot fulfil the demand, and medical educationists need to find alternative source of cadavers. Wilful body donation is the answer. 

Uganda needs a national conversation on body donation. There is a need for deliberative public engagement involving various stakeholder including the public, religious and cultural leaders, civic leaders, the media, educationists, health professionals, medical training institutions, etc. 

This commemoration ceremony will involve inter-denominational prayers for the silent teachers, and a reflection of their contribution to healthcare in Uganda. We hope this ceremony will provoke public debate on a subject that is hitherto considered a taboo by many. We talked about some of these issues last year, in the first ever such ceremony in Uganda, and have received several requests for more information on the procedure for donating one’s body for teaching purposes upon death. Like President Obama’s said, “yes we can”, an the dialogue starts from you and me. You are all invited for the commemoration ceremony at 9.00 am on June 11, 2026, at the Makerere University School of Public Health auditorium on main campus. 

To donate one’s body is to give a final lesson, a final service, and a lasting gift to the nation.

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