Health
Study Reveals Epilepsy Prevalence & Treatment Barriers in Uganda, Urgent Need for Awareness & Resources
By Davidson Ndyabahika & Julius Mugaga Tukacungurwa
A new study conducted in Uganda has unveiled the prevalence of epilepsy and identified significant barriers to treatment. The study conducted by Makerere University School of Public Health in partnership with Ministry of Health and Duke Global Neurosurgery and neurology, utilized community-based screening methods, found that urgent action is needed to increase awareness and allocate more resources to address this pressing public health issue.
Nearly 80% of individuals with epilepsy reside in low- and middle-income countries (LMICs), and a staggering 75% of those with epilepsy in LMICs do not have access to treatment. This alarming trend is further exacerbated by the stigma surrounding epilepsy, which often leads people to avoid seeking medical care due to fear of discrimination or social ostracization. The study underscores the urgent need to address the barriers to treatment, including stigma, and allocate more resources to improve epilepsy care in LMICs.
By providing a community-based descriptive statement about epilepsy in Uganda, this study sought to contribute vital information for intervention planning, addressing the urgent need for increased awareness, support, and access to treatment for people living with epilepsy in Uganda.
At the Epilepsy National Prevalence Study Dissemination and Dialogue meeting held on Wednesday, April 5, 2023 at the Golden Tulip Hotel in Kampala, Professor Anthony Fuller, the USA & Duke Neurosurgery Principal Investigator, revealed concerning findings.
The study unveiled that the national prevalence rate of epilepsy in Uganda is alarmingly high at 1.69 per cent, indicating that over 770,000 Ugandans are living with the disease. Professor Fuller’s presentation shed light on the urgent need for increased awareness, support, and intervention for those affected by epilepsy in Uganda.
During the investigation, participants were asked about their experiences with epilepsy, including symptoms such as shaking, falling, loss of consciousness, bladder control, and abnormal sensations. These questions were part of the primary screen in Phase One of the study, aimed at gathering information on epilepsy-related experiences in the past year.
With a meticulous screening process, the study examined 35,056 individuals suspected to have epilepsy, of whom 2,284 were found positive for unadjusted epilepsy, translating to a prevalence rate of 6.52% in the primary phase.
In the secondary phase, 732 individuals were confirmed positive for unadjusted epilepsy, resulting in a prevalence rate of 2.09%. In this phase, participants were asked about the frequency of attacks, occurrence in children during fever, and association with malaria-related hospitalization. These questions sought to gather additional information to aid in assessing and analyzing the nature and context of participants’ experiences with epilepsy.
Through rigorous clinical validation, including Neuro validation and electroencephalogram (EEG) tests, 594 individuals were confirmed to have epilepsy, bringing the final prevalence rate to 1.69%.
In the Central region, out of 11,746 individuals screened, 198 were confirmed positive for epilepsy, while 11,548 were negative, resulting in a prevalence rate of 1.69%. In the Eastern region, 125 out of 5,776 screened were positive, with a prevalence rate of 2.16%. In the Northern region, 68 out of 5,037 screened were positive, resulting in a prevalence rate of 1.35%. Lastly, in the Western region, 203 out of 12,497 screened were positive, with a prevalence rate of 1.62%.
These regional findings shed light on the distribution of epilepsy cases in Uganda and highlight the need for tailored interventions and support at a local level. “The epilepsy prevalence is unevenly distributed, ranging from zero to over 5% in specific districts,” says study report.
Dr. Fredrick E Makumbi, an Associate Professor and a Ugandan Principal Investigator for the study from MakSPH, highlighted the gap in community awareness regarding epilepsy treatment, leading to an increased prevalence rate.
He pointed out that the youth, aged 18 to 35, had a prevalence rate of 2.37 percent, while those aged 36 to 60 had a prevalence rate of 2.33 percent. Along with other investigators and participants, Professor Makumbi emphasized the need for further studies to identify driving factors and take equitable action.
Dr. Angelina Kakooza Mwesige, a Co-Principal Investigator for Uganda who is also a Senior Lecturer and Paediatric Neurologist in the Department of Paediatrics and Child Health, Makerere University School of Medicine noted interesting gender regional variations of epilepsy with higher prevalence in women compared to men.
In the Eastern region, the prevalence rate was higher in females at 2.40% compared to males at 1.97%. Similarly, in the Central region, the prevalence rate was 1.81% in females and 1.53% in males. In the Northern region, the prevalence rate was 1.33% in females compared to 1.37% in males, while in the Western region, it was 1.54% in females and 1.72% in males.
This revelation according to Dr. Kakooza has prompted further consideration for conducting a specialized study to investigate the underlying factors contributing to this statistic.
“We found the overall prevalence rate is 1.73% in female compared to 1.63% in male. We do not know the reason yet but we are investigating this. Also, what we found out, the medicine that can help treat this disease and the trained specialists are not enough. We need to ensure equal and free access to medicine for all. I appeal to all Ugandans, a person with this disease, just like any other disease deserves our support and care,” said Dr. Kakooza.
Dr. Daniel Kyabayinze, the Director of Public Health at the Ministry of Health -Uganda, thanked the researchers for the great study and acknowledged that epilepsy requires lifelong treatment and highlighted the need to continuously provide treatment for all those affected.
According to Dr. Kyabayinze, the government plans to use the study’s findings to estimate the treatment needs, and Kyabayinze expressed confidence that further examination by Makerere University School of Public Health’s partners will help identify associated factors, such as potential agents or organisms, that can be modified to combat epilepsy. He also noted that while some individuals are already receiving treatment, many Ugandans face challenges in affording the necessary treatment for epilepsy.
Dr. Kyabayinze emphasized the importance of placing mental health specialists in various locations across the country to ensure access to services, stating, “There is also a need to intensify sensitization efforts to avoid stigmatizing people with epilepsy and ensure they receive the services they need.”
Ms. Nina Mago, Founder and Program Advisor of Purple Bench Initiative, underscores the need policy makers to prioritize healthcare needs of individuals with epilepsy to needs of people with epilepsy. She emphasizes affordable access to good quality medication.
“When you have medication, you have less seizures and you become more confident on being independent, to participate in activities which may include going to school, holding up a job, social interaction but all this is possible when there is also strong awareness,” says Nina.
Ms. Mago, says epilepsy is a life-threatening condition; “I came up with a connotation of a phone battery, as a notification of battery low shows up, equally relates to a life about to be lost.”
Dr. Olaro Charles, the Director Health services – Clinical in the Ministry of Health stated that epilepsy remains one of the common mental health conditions in Uganda. He said that they have just concluded a joint review mission and found out that from all their mental health facilities, epilepsy constitute to almost 55.4% of patients.
“If you look at 2019/2020 they were about 314,000 then came to about 340,000 and then last year it was 251,000. This mapping however is very important because it helps us to plan for care. If we do the same in those regions with high prevalence, we may be able to plan well”. Dr. Oralo.
Dr. Sarah Nekesa, Executive Director of Epilepsy Support Association Uganda, called on members of Parliament to increase the budget for mental health drugs, including epilepsy medication, and ensure their availability. She emphasized the need for integrating epilepsy services with other healthcare services to improve accessibility.
Additionally, Dr. Nekesa highlighted the importance of grassroots awareness to combat stigma, and urged the government to allocate adequate human resources and support from health workers to encourage peer talks and build confidence among people living with epilepsy.
“We should increase the drug availability in health facilities and make sure that a person with epilepsy is able to get medication whenever they need it. Epilepsy is not understood by everyone so if everybody understands epilepsy it would be easier for treatment and stigma to go down and integration of epilepsy in every service that is given to the community”. Said Dr. Nekesa.
Health
Ekyaalo Diagnostics; Johns Hopkins University Partners with Makerere and MUST to Advance AI Innovation for Breast Cancer Diagnosis
By Joseph Odoi
Globally, Breast cancer remains a serious health challenge, with the World Health Organization (2022) reporting over 2.3 million new cases annually and nearly 670,000 deaths. In Uganda, breast cancer is one of the leading cancers among women, yet the majority of patients are diagnosed at late stages due to delays in accessing diagnostic services, most of which are centralized at the Uganda Cancer Institute (UCI) in Kampala. Since 72% of Uganda’s population lives in rural areas, women often face late diagnosis due to long travel distances. Even after accessing care, results can take 1–6 months due to the slow process of transporting samples to central laboratories. This delay directly impacts the timely start of treatment.
To address this gap, Johns Hopkins University in collaboration with Makerere University and Mbarara University of Science and Technology (MUST), is spearheading innovative solutions that leverage artificial intelligence (AI) and low-cost technologies to improve early diagnosis and treatment.
As part of this collaboration, the Centre for Maternal, Newborn, and Child Health Research at Makerere University School of Public Health led by Associate Professor Peter Waiswa in July hosted a team of graduate biomedical engineers from the Center for Bioengineering Innovation and Design (CBID) at John Hopkins University.
The team is developing a low-cost, AI-powered technology called Ekyaalo Diagnostics, aimed at reducing the turnaround time for breast cancer diagnosis, especially in hard-to-reach areas. As part of their work, they undertook a learning tour at the Ministry of Health, Uganda Cancer Institute, and regional cancer referral centres. The purpose was to map stakeholders in the breast cancer space, gather Ekyaalo diagnostic technology usability feedback, and understand the local innovation ecosystem in breast cancer care.
Ekyaalo Diagnostics and Bringing Pathology Closer to Communities
The flagship innovation, Ekyaalo Diagnostics, is a portable AI-powered whole-slide scanner (WSS) designed to digitize cytology samples at Health Centre IVs and General Hospitals. These digitized images are securely transmitted to pathologists at higher-level facilities for timely review, eliminating the need for physically transporting samples to Kampala.
This technology has the potential to reduce diagnosis delays from several months to just a few days, thereby improving survival outcomes for breast cancer patients.
Building Local Solutions to Global Challenges
In addition to Ekyaalo Diagnostics, Makerere researchers at the Department of Biomedical Engineering are also advancing other innovations such as development of artificial breast prototypes to be used in educating women on breast cancer symptoms while Research at Mbarara University led by Dr. William Waswa, are developing PapsAI, a low-cost automated tool that support whole slide scanning of slides for cervical cancer screening.
These initiatives are aligned with the National Cancer Control Plan (NCCP) of the Ministry of Health, which emphasizes prevention, early detection, timely diagnosis.
Design Challenges and Considerations
Despite the progress being made, challenges persist, according to the team’s findings from the tour,these technologies hold great promise however their success in Uganda will depend on addressing some critical barriers.
One of the biggest challenges is limited staffing. Many lower-level health facilities lack trained laboratory personnel to prepare slides. For this reason, new technologies must be designed to be simple, user-friendly, and capable of being adopted after short training sessions.
Another major barrier is equipment maintenance. Past medical innovations in Uganda have often struggled with frequent breakdowns and software failures. The team emphasized that new diagnostic tools must be affordable, durable, and resistant to common system crashes if they are to serve rural health facilities effectively.
Finally, high operational costs continue to undermine sustainability. Some innovations fail because their maintenance costs are too high or because they are incompatible with existing health systems. Ensuring cost-effectiveness and system integration will therefore be vital for the long-term success of breast cancer diagnostic technologies in Uganda.
MORE ABOUT THE PROJECT
The project is led by the Johns Hopkins Center for Bioengineering Innovation and Design (CBID) in collaboration with Makerere’s Department of Biomedical Engineering and MUST researchers. Field learning tours have already been conducted at Mulago National Referral Hospital, Jinja, Mbarara, and Fort Portal Regional Referral Hospitals, with input from clinicians, technologists, and innovators in Uganda’s health ecosystem.
The Johns Hopkins team has conducted usability interviews with clinicians, laboratory technologists, and surgeons at multiple hospitals including Mulago, Jinja, Mbarara, and Fort Portal. They have also engaged with Uganda’s innovation ecosystem, including makerspaces and industry partners. It has been noted that the Ministry of Health together with Partners working on treatment of cancer has drafted the National Cancer Control Plan (NCCP) that is aimed at reducing incidence, morbidity and mortality through prevention and early treatment and palliative care. The Plan will give guide on health education, early detection, and diagnosis among others Special thanks go to the Center for Bioengineering Innovation and Design (CIBID) Johns Hopkins University for funding this field learning tour, Centre for Maternal Newborn and Child Health Research at School of Public health (Makerere University) for hosting the team, Departments of Bioengineering at Makerere University and Mbarara University of Science and Technology, Mulago pathology department and the Uganda cancer institute, Regional Referral hospitals of Jinja, Mbarara and Fort Portal among other General hospitals and Health center IVs visited for technical input.
Health
VectorCam Project; Makerere, Johns Hopkins, and MoH to Scale Up AI-Powered Malaria Surveillance across Uganda
On August 20, 2025, Makerere University School of Public Health (MakSPH) convened a timely workshop on Strengthening Equitable Partnerships in International Research Collaboration in Uganda. Held at the MakSPH Auditorium, the event brought together researchers, policymakers, and institutional leaders to reflect on how Uganda, and indeed the wider region, can engage more effectively and derive greater benefit from global research collaborations.
Delivering the keynote address, Prof. David Musoke Serwadda, a Professor Emeritus at Makerere University and a globally recognised HIV researcher and epidemiologist, urged a rethinking of how international research partnerships are structured. A former head of the Institute of Public Health (IPH) and later Dean of the School, serving between 2003 and 2009, Serwadda is also the founding director of the Rakai Health Sciences Programme (RHSP), which is one of Uganda’s most influential research initiatives on HIV. While acknowledging the many benefits Uganda has gained from global research collaborations, he cautioned that too many times, these partnerships remain transactional, shaped by donor priorities, bound to project cycles, and offering limited long-term value to local institutions once projects close.
Prof. Serwadda, himself a globally recognised and well-accomplished researcher, with over four decades of experience and numerous awards for his contributions to science and global health, observed that Ugandan partners are many times included in research projects for visibility rather than substance, often excluded from core roles such as Principal Investigators or from influencing agenda-setting, budget control, and authorship. “Partnerships are not an end in themselves; they exist to help us achieve mutually agreed objectives built on shared responsibility and reciprocal obligations. Too often, Southern institutions are brought into projects late, simply for optics. That is not equitable collaboration,” he insisted.
During his talk, he stressed that this imbalance undermines both research quality and sustainability, noting that normally, when local researchers are sidelined, studies often fail to align with national priorities or build capacity that endures. By contrast, partnerships that are grounded in mutual respect, fair resource sharing, co-design, and shared decision-making have the impact of producing knowledge that is globally relevant and locally impactful.
“Equity in partnerships is about fairness, ensuring that all partners, regardless of context, can contribute meaningfully. This also requires responsibility on our part in the Global South. We must insist on involvement from project conception, negotiate fair terms, and strengthen our own systems to manage collaborations effectively,” Prof. Serwadda advised, emphasising that strong institutions, clear strategy, agenda and objectives are key for local institutions to engage in mutually fair and beneficial research collaborations at the global and continental stage.
As Director and later Dean of MakSPH, Prof. David Serwadda spearheaded numerous research collaborations and attracted substantial grants that elevated the School and the University’s global standing. Today, MakSPH is recognised as Makerere University’s flagship unit for its wide-ranging partnerships and robust research management systems. Since its beginnings as a small Department of Preventive Medicine in 1954, through its transformation into the first Institute of Public Health in sub-Saharan Africa in 1975, its elevation to School status in 2007, and most recently its reinstatement as a standalone School with college status within Makerere University in January 2025, a status first granted in 2001, MakSPH has built a 70-year legacy of advancing public health through research, training, and policy engagement.
The School’s evolution, as often couched by its leadership, has been anchored on strategic and strong partnerships. These collaborations, be they local, regional or global, have driven health systems innovation, strengthened capacity, and informed policy, making partnerships the cornerstone of the School’s past achievements and future ambitions. At the celebration of the School’s 70th Anniversary, marked in December 2024, Makerere University Vice Chancellor Prof. Barnabas Nawangwe hailed MakSPH’s research output, community impact, and strong partnerships cultivated throughout the years. The Mak VC cited the School’s pioneering role in the HIV response led by Prof. Serwadda in the 1980s, the establishment of nutrition centres such as the Mwana Mugimu Unit at Mulago Hospital and across Uganda by the late Prof. John Kakitahi in the 1990s with support from Rotary International, and community projects like Kasangati Health Centre along Gayaza Road with support from the Rockefeller Foundation in the late 1950s, which advanced public education on healthy environments and wellness.
“The School of Public Health brings in almost half of all research grants at Makerere University, both in number and value, and these partnerships have been central to tackling Uganda’s public health challenges. From pioneering HIV/AIDS work that shaped global prevention strategies to interventions in maternal health, malaria, and infectious diseases, MakSPH has consistently combined academic excellence with community service. Its leadership during the COVID-19 pandemic further showed its ability to respond to national health emergencies with evidence-based solutions that directly benefit the people,” Prof. Nawangwe said with gratitude for the work done by the School through collaboration.
In 2024, the School had over 350 peer-reviewed publications in high-impact international journals as a result of this wide network and partnerships. MakSPH currently maintains a strong mix of North–South and South–South collaborations. Within the continent, the School is actively working in more than 25 countries, often partnering with multiple institutions within individual countries to advance research, capacity building, and policy influence. One such recent collaboration is the Partnership to Enhance Technical Support for Analytical Capacity and Data Use in Eastern & Southern Africa (PERSuADE) Project, funded by the Global Fund. Under PERSuADE, MakSPH, the prime grant recipient, hosted the secretariat led by Dean Prof. Rhoda Wanyenze as Principal Investigator, tasked with overall coordination across 12 countries, while a Steering Committee chaired by Prof. David Serwadda provided oversight.
PERSuADE was implemented in two phases between 2018 and 2023. The project brought together 12 universities and 12 Ministries of Health in East and Southern Africa to strengthen analytical capacity and promote data use in national health programmes, cascading skills to districts and lower facilities. In its second phase, the project trained over 1,500 health staff, including 934 at the sub-national level, in data analysis and use, and generated more than 80 analytical outputs on HIV, TB, and malaria. These informed National Strategic Plans in seven countries and improved programme strategies in all 12. Sixteen in-service staff from seven countries received specialised training in HIV key population surveillance, health information systems, and data use. The project also piloted the Maturity Index Model in five countries, helping ministries track progress in institutionalising data-driven decision-making.
In Uganda, the PERSuADE project was implemented in Kiboga, Buikwe, Kasanda, Mukono, and Mityana districts, selected by the Ministry of Health. According to the Principal Investigator, Prof. Rhoda Wanyenze, strengthening data analysis and use has greatly enhanced the capacity of Ministries of Health to deliver targeted interventions that directly benefit communities. She noted that improved analytical skills at national and subnational levels now enable ministries to identify disparities in HIV, TB, and malaria burdens, while district and facility health workers can use data to strengthen local service delivery. “With better data, districts can plan more efficiently, allocate medicines, and implement tailored prevention campaigns to address specific risks, raise awareness, and reduce new infections,” she said, emphasising the role of equitable collaboration as a key success factor in Uganda and across the continent for this partnership.
Indeed, during a learning visit to Uganda in September 2024, Dr. Estifanos Biru Shargie, Senior Specialist for Monitoring, Evaluation, and Country Analysis at the Global Fund, commended the PERSuADE Project for strengthening local capacity and fostering sustainable health system improvements through South-South partnerships among schools and ministries. “The impact has been significant. In Kiboga, I was impressed by how teams mapped gaps in services and addressed them over four years, using data to inform decisions and monitor progress. Working with Makerere University School of Public Health has been an honour. The School blends academic excellence with practical implementation, backed by strong financial management and a long-standing relationship with the Ministry of Health. Their coordination, networking, and efficiency have been exemplary,” Dr. Shargie said.
Another currently ongoing initiative at the School is the African Leadership and Management Training for Impact in Malaria Eradication (ALAMIME) program, led by MakSPH with ten participating institutions across nine malaria-endemic countries, funded by the Bill & Melinda Gates Foundation. Co-led by Prof. Elizeus Rutebemberwa and Prof. Dosithée Ngo Bebe, ALAMIME is cultivating the leadership Africa needs to defeat malaria by strengthening institutions, building capacity, and fostering regional networks. In 2024 alone, the program trained over 250 participants, nearly half women, from national malaria programs, ministries, and NGOs. Through structured training, alumni-led webinars, and cross-country exchanges, the program has demonstrated how equitable, multi-country partnerships translate investment into sustainable systems and shared momentum toward malaria elimination.
For nearly 15 years now, MakSPH has also hosted the NTU–Mak Partnership, a collaboration between Makerere University and Nottingham Trent University, first conceived in 2010, with Assoc. Prof. David Musoke and Prof. Linda Gibson as the Uganda and UK Co-Leads. One of the key reasons for the success of this partnership is equity, and it has since attracted over £1.4 million in grants, trained more than 900 Village Health Teams in Wakiso District, supported over 350 practitioners in antimicrobial stewardship, and facilitated exchanges for more than 200 students and faculty. It has also equipped community health workers to respond to non-communicable diseases, antimicrobial resistance, and the COVID-19 pandemic, while generating over 30 peer-reviewed publications and convening global platforms such as the first International Community Health Worker Symposium, held in Kampala in 2017.
Dr. Musoke, the Co-Principal Investigator for the project on strengthening equitable research collaborations in Uganda, described the NTU-Mak partnership as a model North–South partnership that has produced both joint scholarship and lasting institutional ties. He noted that its success has inspired wider collaborations, as the current project on equitable partnerships builds on this foundation. Emerging from a British Academy regional workshop in Nairobi in 2024, MakSPH extended its engagement to Mountains of the Moon University (MMU), Uganda Martyrs University (UMU), and the National Agricultural Research Organisation (NARO). Together with Nottingham Trent University, these institutions are now advancing reforms to embed equity in research partnerships across Uganda’s research ecosystem.
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