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.
Four Makerere University School of Public Health (MakSPH) faculty have been inducted for the 2024 Uganda National Academy of Sciences (UNAS) fellowship, a preeminent nation’s most respected scientific bodies. This is the first time MakSPH is scooping a large number of faculty fellows, which was the highest for a single institution. This prestigious honor was awarded on Friday, November 1, 2024, at Four Points by Sheraton Kampala, Uganda.
The recipients are;
⦿ Professor David Guwatudde, a Professor of Epidemiology and Biostatistics at the MakSPH where he has been teaching for over 32 years. In the last decade, Dr. Guwatudde’s research interest has been on characterising the epidemiology, evaluattion and effectiveness of appropriate interventions for prevention and control of selected non-communicable diseases (NCD) especially diabetes and hypertension.
⦿ Dr. Fredrick Edward Makumbi, an Associate Professor of Biostatistics at MakSPH in the Department of Epidemiology and Biostatistics. A seasoned public health professional in Uganda, he is also a Gates Fellow. Through his expertise in population health and the evaluation of public health interventions, Dr. Makumbi has generated significant evidence that impacts the field. He has published over 300 journal articles and leads the PMA project, which focuses on evaluating schistosomiasis and family planning initiatives in Uganda.
⦿ Dr. David Musoke, a Senior Lecturer in the Department of Disease Control and Environmental Health at MakSPH. He serves as the Chair of the Grants and Research Capacity Building Committee at MakSPH and is the President Elect of the International Federation of Environmental Health (IFEH). A graduate of Makerere University, his research interests include environmental health, malaria prevention and community health. He organized the first International Community Health Workers symposium which was held in Uganda, and is an academic editor and reviewer for several journals.
⦿ Dr. Victoria Nankabirwa, an experienced clinical researcher and Lecturer in the Department of Epidemiology and Biostatistics at MakSPH. She holds a PhD from the University of Bergen and is also a member of the WHO Immunization and Vaccine-related Implementation Research (IVIR) Advisory Committee. Her key interests include mother and child outcomes, particularly survival and the impact of immunization.
UNAS is an independent, non-profit, and non-political organization, established and founded in October 2000 to provide Uganda with credible, balanced, and evidence-driven guidance on matters of science and development. Membership is drawn from distinguished scientists and scholars who have made significant, lifelong contributions across diverse fields, including natural and social sciences, arts, and humanities.
The UNAS Fellowship remains one of the nation’s most respected scientific bodies, with over 200 members working collaboratively in interdisciplinary and transdisciplinary fields to address Uganda’s challenges through science and innovation.
Every year, Fellows of the Uganda National Academy of Sciences (FUNAS) have an opportunity to nominate potential fellows into the academy based on their merit, impact and contribution of the world of Science. A nomination stands substantive once it is seconded by another FUNAS, after which the nominees go through a rigorous selection process by a highly competent committee of scholars in the academy.
Once selected and inducted, fellows in the academy devote their time on honorific activities and service provision through arbitrating on contentious national debates such as whether to provide free social services to refugees and whether to use DDT to control Malaria. Since inception on October 20, 2000, the UNAS has distinguished itself as a premier honorific society for eminent scientists in Uganda. It leverages on the expertise and stature of its members to provide pro bono evidence-informed advice to government and Ugandans on science, technology, innovation and sustainable development.
Dr. David Serwadda, an Exemplar Scholar of Makerere University who this year received the prestigious Professor Emeritus title presented the new fellows to the UNAS convention. He described Dr. Nankabirwa as a prolific researcher, with over 80 publications in peer-reviewed journals and an impressive funding portfolio that includes a number of highly competitive research grants.
On her part, Dr. Victoria Nankabirwa said she was grateful for the recognition and pledged to uphold UNAS values.
“I am very thankful for this recognition, and as I reflect on the journey that has brought me to this point, I am reminded that this is not the result of solitary work but of shared aspirations, collaborations, and partnerships. As such, I am very thankful to my nominators and seconders, Prof. David Serwadda and Prof. Rhoda Wanyenze, as well as to my colleagues, my students, and my family, represented by my mum. To these people and to you, I extend my deepest gratitude. I pledge to uphold the academy’s values, advocate for science-driven policies, and mentor future generations. I will work as hard as I can within this FUNAS,” said Dr. Nankabirwa.
Dr. Fredrick Edward Makumbi expressed his gratitude and commitment during his recent induction as a fellow of the Uganda National Academy of Sciences (FUNAS). “I am delighted to have been nominated and accepted as a FUNAS. I am truly appreciative and acknowledge the support of all those who have helped me, from my family to my teachers and colleagues—many of whom are here today. They have supported me and brought me to this great podium. I pledge to continue working, supporting, and promoting the health and well-being of the people of Uganda and beyond through science, as well as mentoring others to ensure a sustainable generation that can uphold the health and well-being of Uganda and beyond. I am glad to be here, and thank you very much,” Dr. Makumbi stated.
Dr. David Musoke is a promising researcher and Senior Lecturer in the Department of Disease Control and Environmental Health at Makerere University’s School of Public Health. He serves as the Chair of the Grants and Research Capacity Building Committee and is the President Elect of the International Federation of Environmental Health (IFEH).
“I am really delighted and humbled to be joining this elite class of academics and scholars as a fellow of UNAS. It is an honor to join many of my mentors from over the years, including my very own father, who is also a fellow of UNAS and is here today, Prof. Miph Musoke. I wish to thank my family—my parents, wife, and children—for all their support, as well as the research teams we have worked with,” said Dr. David Musoke.
Adding that; “I also extend my gratitude to my mentors from the university, Professor David Serwadda and Professor Rhoda Wanyenze, for nominating me, along with all the others who have contributed throughout this journey, including funders, collaborators, the community, and everyone else we work with. I look forward to serving in this capacity and upholding the goals and aims of UNAS, especially in the field of Environmental Health and Community Health.”
Professor Guwatudde, a lead investigator in two national surveys assessing non-communicable disease (NCD) risk factors in his country—first in 2014 and again in 2023—expressed his commitment to tackling NCDs as he was recognized by the Uganda National Academy of Sciences (UNAS).
“I would like to thank the UNAS council, the secretariat, and all members for accepting me as a member,” Prof. Guwatudde said.
“I pledge to contribute in the area of non-communicable diseases. We have conducted extensive research in this country, giving us a clear picture of the NCD burden, a reality that affects us all. I would be glad to share this insight with fellow members,” added Guwatudde.
National academies worldwide provide neutral platforms for experts across disciplines to tackle societal challenges and clarify emerging issues in science, technology, and policy. These institutions play a crucial role in preparing for and responding to global threats such as pandemics. Since its inception, the Uganda National Academy of Sciences (UNAS) has been led by four presidents: Prof. Paul Mugambi (2000-2014), Prof. Nelson Sewankambo (2014-2019), Prof. Peter Mugyenyi (2019-2022), and, since October 2022, Prof. Grace Bantebya-Kyomuhendo, a Professor of Women and Gender Studies at Makerere University—the first female head of the academy.
Prof. Bantebya extended her congratulations to the newly inducted fellows. She emphasized the responsibilities UNAS fellows carry, including upholding the academy’s constitution and contributing to its vision, mission, and objectives. “Our fellows play a critical role in advancing the academy’s goals, and their dedication is vital to our impact on science and policy,” Prof. Bantebya stated.
“Remain academically active. Please listen to that. In meaningful pursuit of academic excellence in your respective areas of expertise. Do not say that now that you have become a fellow, you will stop being academically active. We expect you to continue,” she emphasised.
She also called on the fellows to actively participate in the academy’s conventions, consensus-building efforts, and other activities. Prof. Bantebya emphasized the importance of consensus studies to the academy’s mission, urging fellows to make themselves available when called upon.
“Ensure high standards of conduct based on national and international best practices. We expect you to maintain and ensure high standards yourselves and foster good relations among members as well as with the academy, the general science community, and the public. You also need to meet all the obligations as a fellow of UNAS, whether financial or otherwise, as stipulated,” the Academy President said
A fellow may lose their membership in the academy if they act against the UNAS constitution or bring disrepute to its goals, name, or vision. Membership can also be terminated if a member is convicted by a competent court or authority of a felony or serious crime, or if they are declared bankrupt or of unsound mind.
UNAS’s mission is to foster the welfare and prosperity of the Ugandan people by generating, sharing, and utilizing robust knowledge and insights to deliver independent, merit-based scientific counsel to government and society. As part of the global scientific community, UNAS maintains strong ties with the Network of African Science Academies (NASAC), Network of Science Academies in Islamic Countries (NASIC), the U.S. National Academies, IAP, and TWAS.
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