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
MakCHS 2026 Orientation begins: Freshers Urged to Prioritise Responsibility, Integrity and Academic Excellence
New students joining Makerere University College of Health Sciences (MakCHS) have been urged to embrace responsibility, discipline, integrity and hard work as they embark on their journey towards becoming healthcare professionals.
The call was made during the opening session of the college’s orientation programme that began on the 4th August and will conclude on 7th August 2026. During the session, College leaders including the Principal and Deans welcomed students admitted to study various programmes at MakCHS. The speakers outlined expectations for academic and professional conduct.
The session was moderated by Professor Mark Kaddu, Deputy Dean-School of Medicine. Welcoming the freshers, he stressed the importance of hard work highlighting that ‘your academic documents will speak for you and excellence will open doors’.
The college leaders congratulated the students on securing admission to Makerere University, noting that many qualified applicants were unable to secure places. They encouraged the new entrants to make the most of the opportunity by committing themselves to excellence from the first day. The students were reminded that programmes offered by the college are rigorous full-time courses that demand commitment, discipline and consistency.
In his remarks, Professor Bruce Kirenga – Principal, MakCHS welcomed the new entrants and provided an overview of the College’s rich history, highlighting its growth and commitment to excellence in health professionals’ education. The Principal reaffirmed the college’s mission of impacting the national health agenda through transformational teaching, research and innovation for societal development. Students were encouraged to embrace the wide range of career pathways and professional opportunities available upon qualification, emphasizing that their training would equip them to make a meaningful contribution to society.
Stressing the importance of mind-set change which has also been introduced as a crosscutting course, the Principal urged the students to cultivate discipline, resilience, professionalism, and a passion for lifelong learning. “The journey you have embarked on is challenging, but it is achievable,” the Principal noted, reminding the students that many graduates before them successfully completed the programme through dedication and hard work. The address concluded with a call for the new students to remain focused, work diligently, and strive for academic excellence as they prepare to become the next generation of healthcare professionals who will transform their communities.
Professor Annettee Nakimuli, Dean – School of Medicine encouraged students to work collaboratively rather than viewing learning as a competition. She urged them to form productive study groups, support one another and take advantage of opportunities for mentorship, research and international exchange programmes available through the college. “We are here to support you throughout your journey,” she told the students, adding that strong academic performance could open doors to international exchanges, postgraduate training and research collaborations with universities around the world.
Professor Nakimuli warned students against academic dishonesty, including examination malpractice, falsification of academic records and illegal programme changes. She cautioned that such misconduct could lead to dismissal from the university, even after several years of study. Students were further advised to be vigilant against fraudsters who promise to alter admission records or transfer students into different academic programmes through unofficial channels.
In his remarks, Dr. Richard Muhindo, Dean-School of Health Sciences highlighted the importance of personal responsibility and wellbeing beyond academics. He encouraged students to manage their time wisely, avoid drug and alcohol abuse, stay away from gambling and maintain healthy lifestyles throughout their studies. Dr. Muhindo emphasized the importance of professionalism, reminding students that healthcare careers are built on compassion, teamwork and service to humanity. He encouraged students from different programmes to learn together, respect one another’s professions and build networks that will benefit them throughout their careers.
In his address to the freshers, Dr. David Nono who represented Dr. Annet Kutesa, Dean – School of Dentistry, encouraged students to embrace the opportunities before them by working hard, maintaining discipline, and striving for academic excellence. He emphasised the importance of achieving a strong academic record, noting that outstanding performance opens doors to competitive opportunities and future specialisation. The Dean also urged students to pursue postgraduate studies, reminding them that the dental profession requires highly qualified specialists. Reflecting on his own academic journey, he shared how dedication and continuous learning enabled him to study and work internationally before returning to serve the University. He concluded by encouraging students to remain focused, respect University rules, support one another, and make the most of their time at the institution as they prepare for successful professional careers.
Representing the Dean of the School of Biomedical Sciences, Professor Elisa Mwaka welcomed the freshers and congratulated them on earning admission to the College, urging them to embrace responsibility and discipline as they begin university life. Introducing the School of Biomedical Sciences to students, he explained that it handles core foundational courses like Physiology, Biochemistry, Pathology, Medical Microbiology, Immunology, Molecular Biology, among others that support their academic journey. Professor Mwaka reminded students that success at university depends on personal responsibility, regular class attendance, effective time management, and organised study habits, emphasizing that attendance of at least 80 percent of lectures and practical sessions is required to qualify for examinations. He also encouraged students facing academic or personal challenges to seek guidance from their lecturers early rather than waiting until examination time, and urged them to be punctual, prepare adequately for classes.
Mental health featured prominently during the orientation. Leaders acknowledged that health sciences programmes can be stressful encouraging students experiencing emotional or psychological challenges to seek support early rather than suffering in silence. They also called on students to avoid stigmatizing colleagues facing mental health difficulties.
Students were also cautioned to safeguard their personal belongings, particularly phones and laptops, as they settle into campus life. Officials warned that new students are often targeted by thieves during the first weeks of the academic year.
The opening session for the 2026 orientation concluded with a message of encouragement, with MakCHS leaders expressing confidence that the students would develop into competent, ethical and compassionate healthcare professionals capable of contributing to Uganda’s health sector and beyond.
The Orientation Programme continues until Friday, 7th August, and all students were strongly encouraged to attend every session to give themselves the best possible start to their academic journey. Important topics to be covered include IT services, registration procedures, university policies, mental health and well-being, and awareness and prevention of sexual harassment. These sessions are designed to equip students with the knowledge and support they need to thrive both academically and personally.
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