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
Mak and UNICEF Uganda Sign MoU to Strengthen Child Rights through Research, Training, and Innovation
Makerere University (Mak) and United Nations Children’s Fund (UNICEF) Uganda have signed a Memorandum of Understanding that launches a two-year, renewable partnership aimed at advancing child rights and well-being through rigorous research, capacity building, and policy-driven innovation.
The agreement was signed on Thursday, 14 August 2025, by Makerere Vice Chancellor Professor Barnabas Nawangwe and UNICEF Uganda Representative Dr. Robin Nandy in the Vice Chancellor’s Boardroom at Makerere’s Main Building.
The MoU enlists a focused collaboration on generating child-focused data and research to inform policy and program design, analyzing how health, nutrition, education, and protection initiatives affect children, and strengthening the social sector workforce through targeted training, curricula, and performance standards.
It also emphasizes knowledge management, wide dissemination of findings to stakeholders, policy and legislative advocacy for child rights, and active student engagement through internships, skilling opportunities, and communities of practice. The renewed partnership is designed to bolster evidence-based policy-making and drive program improvements that contribute to Uganda’s progress toward the Sustainable Development Goals by 2030.
“The signing of this MoU deepens Makerere’s long-standing commitment to the well-being of Uganda’s children and Africa’s future,” said Vice Chancellor Nawangwe. “I thank Dr. Nandy for his leadership and for the continued collaboration that will expand our capacity to deliver research with immediate, practical benefits for communities.”
UNICEF’s Dr. Nandy stressed that the partnership reflects UNICEF’s global mission to protect and promote every child’s rights while translating research into policy and action. He highlighted Makerere’s proven strength in research leadership as a critical asset in the effort to generate robust evidence for government decision-making and resource allocation.
“This partnership shows our commitment to combine academic knowledge with practical results,” said Dr. Nandy. “Using Makerere’s research skills to create important information about child welfare issues and solutions, making sure that every project we start is based on solid data and aims to safeguard and support children’s basic rights.”
The partnership builds on Makerere University’s established research strengths and UNICEF’s global mandate to protect children. It complements longstanding collaborative work through Mak’s School of Public Health (MakSPH) and other faculties, reinforcing a broader university-wide commitment to evidence-based policy and community impact.
Since 2016, Makerere has participated in more than 30 UNICEF-supported research projects, which emphasize a deep mutual trust and shared mission. The Vice Chancellor noted that this history laid a robust foundation for the new MoU while also underlining opportunities to broaden collaboration beyond the health sector.
Among the notable prior initiatives is MakSPH’s joint work with UBOS and UNICEF, supported by EU funding, on the first comprehensive Food Security and Nutrition Assessment in ten districts of Northern Uganda and the West Nile region (2019). The findings of this work informed targeted nutrition programs and strategies to combat malnutrition among vulnerable populations, shaping policy directions at local and national levels.
In 2023, MakSPH, in collaboration with the National Planning Authority (NPA) and UNICEF, along with FHI360 and the Ministry of Health, produced an updated Situation Analysis of Newborn Health in Uganda. The document has guided the ministry’s national strategy development, including costed investments to improve newborn health across the country.
Professor Rhoda Wanyenze, Dean of MakSPH, hailed the partnership as a continuation of a long-standing relationship, noting that UNICEF’s support was instrumental in establishing the Makerere University Centre of Excellence for Maternal Newborn & Child Health (MNCH) in 2013.
“It’s such a delight, a great honor to finally get to this event where we can formalize our partnership with UNICEF. The partnership between UNICEF and Makerere has been a long-standing one, and we have worked together for decades, which has driven critical research and informed national policies,” she said. She emphasized that both institutions share a passion for tackling adolescent health challenges, particularly early pregnancies and marriages, which remain persistent barriers to progress.
The MoU extends collaboration beyond the School of Public Health. The Vice Chancellor noted productive partnerships across other departments, including the Department of Journalism and Communication and the College of Humanities and Social Sciences, emphasizing how diverse disciplines can contribute to evidence-based policy and community well-being.
Another important example is the Caring for the Caregiver (CFC) intervention led by the Makerere Institute of Teacher Education and Research (MITER) in the College of Education and External Studies (CEES). This was implemented in partnership with the Ministry of Health, UNICEF Uganda, and international partners. The evaluation examined caregiver emotional wellbeing, social support, and parenting stress in rural Uganda, contributing to the growing evidence base for nurturing care in resource-constrained settings.
Also, the School of Statistics and Planning in the College of Business and Management Sciences (CoBAMS) has partnered with UNICEF to tackle urgent socio-economic and public health challenges. A key example is the Socio-economic Impact Assessment of the 2022 Ebola Virus Disease outbreak in Mubende and Kassanda districts, which examined household-level shocks, community coping strategies, and the wider disruption of livelihoods. The study’s findings have informed national policy dialogue and action planning, emphasizing that there must be stronger preparedness measures.
According to the Vice Chancellor, the university’s broader engagement with UNICEF as a driver of research, innovation, and community outreach benefits children and families throughout Uganda.
For Dr. Nandy the partnership will support student involvement in real-world operational and programmatic work, creating pipelines for young scholars to contribute to child welfare initiatives.
Both parties expressed a shared vision of translating research findings into concrete actions that strengthen child protection and opportunities for learning and development. The collaboration is expected to yield new efforts for effective interventions, sharpen the policy dialogue, and catalyze scalable innovations that improve the daily lives of Uganda’s children.
Health
Makerere University College of Health Sciences marks Centenary with expansion of Super-Specialized healthcare Training
On 30th July 2025, Makerere University hit a milestone in specialized healthcare training as it proudly graduated 16 fellows from their Paediatric Hematology and Oncology (PHO) Fellowship Programme. These dedicated physicians who successfully completed a two-year rigorous fellowship program will serve as elite experts in treating life-threatening blood disorders and cancers in children.
The pioneering fellowship program of Makerere University College of Health Sciences (MakCHS) commenced in 2016. This cohort included fellows from Uganda, Kenya, South Sudan, Tanzania, Malawi, Nigeria, and Congo which enhances Africa’s capacity to deliver highly specialized care, promising improved survival rates and quality of life for countless young patients.
In his address to the congregation, Professor Barnabas Nawangwe, Vice Chancellor – Makerere University emphasized the university’s guiding vision of research-led, noting that the institution remains committed to producing highly skilled professionals who address Uganda’s and Africa’s evolving health challenges while acknowledging the resilient hard work of fellows during training and the vital sacrifice as well as support from family and friends.
Prof. Nawangwe recounted Makerere’s significant historical contributions to public health and medical research recalling the College of Health Sciences’ past achievements, including it’s 1964 recognition for lymphoma research leading to nomination for a Nobel Prize for the discovery of the cells that cause the cancer of the lymphoma. He cited the university’s instrumental efforts and contribution in combatting disease on the continent like the Ebola, Marburg, Nodding Disease and the recent COVID-19 pandemic.
He outlined Uganda’s demographic realities and the resultant increase in health challenges with exponential growth of a young population alongside the alarming statistics of childhood cancer and sickle cell disease. With an estimated “7,000 children and adolescents cancer with less than 50% access in treatment,” and over “20,000 babies are born with sickle cell every year,” the need for specialized care is critical, he said. Professor Nawangwe also stressed the urgency of the situation, “It is reported that many of the deaths from cancer and blood disorders are preventable,” stating, “We must produce enough doctors to manage the disease burden we have.”
Prof. Nawangwe recognized the instrumental role of partners such as Texas Children’s Global and Baylor College of Medicine, among others, who supported MakCHS in setting up the PHO fellowship that began in 2016. He underlined the success of the program, which has since trained 24 paediatricians serving as healthcare leaders across Africa.
In his remarks, Professor Bruce Kirenga, Principal – MakCHS highlighted the institution’s century of medical training excellence and its forward-looking vision as the College holds its third graduation ceremony of the PHO Fellowship Program. He emphasized MakCHS’ commitment to advancing healthcare in the region, adding that this future is geared towards more scientific research, innovation and cutting-edge medical care.
Professor Kirenga proudly announced that the fellowship program is the first of their sub-specialized training programs. He revealed the expansion of these crucial programs, noting that the college currently offers three additional sub-specialized training pathways: Neonatology, Interventional Radiology, and Fetal and Maternal Medicine, with two more programs under review; in this regard, Professor Kirenga extended gratitude to partners and collaborators, affirming the college’s unwavering dedication to its mission.
Representing the Director General Health of Services and Permanent Secretary of the Ministry of Health, Dr. Richard Mugahi – Commissioner for Child and New-born Health highlighted the vital role of the new specialists in transforming Uganda’s healthcare landscape. Dr. Mugahi emphasized the graduation as not only fellows’ dedication, but also an important step forward for Uganda’s healthcare system citing the critical need for their expertise.
He detailed the alarming burden of childhood cancer in Uganda, with 1,500 to 3,000 new cases reported annually, yet only 30% access specialized treatment, resulting in tragically low survival rates of 20-30% beyond three years. In response, the Ministry of Health is strengthening its partnership with Makerere University, recognizing that “the role of research, the role of academia is well highlighted and emphasized,” and crucial for producing skilled professionals.
Dr. Mugahi announced the government’s strategic plans to absorb these new specialists, actively developing human resource structures and mobilizing resources to utilize their skills nationwide. He also revealed ongoing efforts to decentralize cancer care through regional centres, citing the operational facility in Gulu and planned sites in Arua, Mbarara, and Mbale, all of which will strongly need the fellows’ expertise to serve our population. He concluded by reiterating the core mission: “Our mission is clear. We now have the inputs, you’re one of the inputs of providing Uganda with the best possible quality of care.” He stated.
Encouragingly, Dr. Rosemary Byanyima Mulago National Referral Hospital (MNRH) revealed that the Hospital is charting a new course towards offering highly specialized medical services, emphasizing that they can only offer that when they have people who have trained as super-specialists.
“This strategic move is predicated to building a robust local human resource, specifically super-specialists, whose rigorous training pathway extends beyond a first degree and master’s to include a specialized fellowship. The traditional approach of training abroad is very expensive” Dr. Byanyima noted. To overcome this, Mulago is actively working with collaborators to build the capacity to train locally. This innovative model involves sponsoring a select few for training abroad, who then return to establish and lead local programs, significantly enhancing the hospital’s self-sufficiency.
“Mulago is uniquely positioned as an ideal training ground due to its infrastructure. We have the equipment. And of course, there are many patients who require the service.” Dr. Byanyima said. She noted that while Mulago provides the environment, it collaborates with accredited training institutions like Makerere University for academic awards.
The benefits of local training are multifaceted; it not only builds internal capacity but also allows the hospital to continuously identify and address service delivery gaps in infrastructure, equipment, medicines, and sundries, Dr. Byanyima added. Local training is also cheaper and eases the very strenuous emotional burden on advanced-age trainees with families, who would otherwise have to relocate abroad for years. Crucially, as these experts train, they simultaneously offer services, with patients directly benefiting from their evolving skills. In addition, she noted, Mulago leverages collaborations to acquire essential resources, while simultaneously lobbying the government for sustained funding to ensure the long-term continuity of the services.
Addressing the escalating challenge of non-communicable diseases (NCDs) like cancer and diabetes, Dr. Byanyima acknowledged the continuously increasing number of patients, necessitating a proportional increase in human resource infrastructure, medicines and surgeries to be able to meet the demand. She also stated Mulago’s role in health education at the tertiary level, empowering patients to disseminate crucial health information within their families and communities, complementing primary healthcare prevention efforts by the Ministry.
In his speech, Dr. Joseph Lubega, a Children’s Cancer and Blood disease Specialist and Assistant Professor at Baylor College of Medicine, Texas Children’s Hospital, USA, recognized the significant advancements in child healthcare across Africa with specialists trained in children’s cancer and sickle cell disease.
Dr. Lubega emphasized the profound impact of PHO Fellowship Program on patient outcomes stating that ‘whereas when we started this work, most children with cancer anywhere in Africa would die within a month of a diagnosis, now most of them are cured.’ Despite this progress, he stressed the imperative to expand reach beyond major cities like Nairobi, Kampala, and Dar es Salaam, aiming for comprehensive coverage across all countries, especially given the much bigger challenge posed by sickle cell disease. The ultimate goal, he explained, is for the specialists to train lower health workers in their countries, ensuring every child is reached.
Challenging the conventional focus on infectious diseases in Africa, Dr. Lubega advocated for greater attention to non-communicable diseases (NCDs), saying, “Sickle cell disease is one of the most common non-communicable diseases. It is part of African DNA, 2% of new-borns get this diseases.” He noted that unlike acute infections, NCDs demand lifelong follow-up and community-based care, necessitating a re-evaluation of health system training.
One of the fellows, Dr. Ankunda Siyadora who works with Mbarara Regional Referral Hospital, noted that the fellowship will revolutionize the landscape of childhood cancer and blood disorder care in Western Uganda. In her words, “my passion was ignited during internship at St. Mary’s Hospital in Gulu, Uganda. I witnessed numerous children suffering from advanced Burkitt’s lymphoma, often receiving only palliative comfort. That made me a bit sad, but also built the passion I have for paediatric haematology.” she recounted.
Motivated by the stark contrast between 80% survival rates in Western countries and the grim reality she encountered, Dr. Ankunda’s desire is to change the narrative that every child with cancer or blood disorder should die or be in pain. Her fellowship, she believes, will lessen the burden by ensuring every child who has a cancer or a blood disorder, gets an early diagnosis and then get the right treatment for their disease.
Addressing the common misconception that childhood cancers stem from environmental or lifestyle factors, she clarified that “in children, it’s more about the genetics, it’s just a mistake, something went wrong in the genetics, it’s nothing to do with the family or the environment, majority, close to 99% of childhood cancers, are a result of spontaneous mutation.” While a small percentage (1-3%) can be inherited, like retinoblastoma, most cases are simply “bad luck, nothing to do with the environment, nothing to do with your parents.” This understanding is crucial for families, alleviating guilt and redirecting focus to early intervention.
The experts will be pivotal in improving care for children with blood disorders and cancers, addressing the country’s high childhood cancer burden and with the Ministry of Health planning will integrate these specialists into the healthcare system and establish regional cancer centres. This in turn will increase access to specialized care, improve treatment outcomes, and enhance the quality of life for children with cancer and blood disorders in Uganda and beyond.
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