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.
At a ceremony held on 30th May 2025, themed ‘They taught us without saying a word’, the Makerere University College of Health Sciences (MakCHS) commemorated the silent teacher which are the cadavers (bodies) used in anatomy classes for medical students. In addition to a commemoration service, the event was used to create awareness and sensitise the public about the the importance of whole body donation.
The chief guest at the commemoration was Professor Mukadasi Buyinza, Deputy Vice Chancellor – Academic Affairs representing the Vice Chancellor, Professor Barnabas Nawangwe. The event attended by MakCHS students, staff and alumni was organised by students under Anatomy Society of MakCHS supported by Department of Anatomy and MakCHS leadership.
Welcoming guests to the event, Waziwu Mordecai–final year student of medicine and surgery who serves as President of the Anatomy Society, MakCHS explained that the reason for the gathering is three-pronged: to commemorate the silent teachers who make a profound contribution to medical education; to instill knowledge, compassion, and professionalism in future healthcare providers; and call on the community to support this noble act through awareness, advocacy, or future donation. ‘May the memory of our silent teachers live on in every life we will one day save’, he said.
The Anatomy society was founded in 2013 with aim of students providing peer mentorship to fellow students in lower years, such mentorship sessions help students appreciate better the anatomy of the human body. The society has supported:enhanced learning and mentorship; promoted academic participation including internal and external quizzes; and fostered connections including strengthen relationships between students across classes and with alumni.
Professor Elisa Mwaka, Head – Department of Human Anatomy welcomed all present for attending the ceremony. He thanked the College management led by the Principal, Professor Bruce Kirenga for the support provided in organizing the ceremony. He also expressed utmost appreciation to the Vice Chancellor for attending despite the competing priorities requiring his attention.
Professor Mwaka highlighted that we are here today, to pay our respect to the individuals whose bodies have been used for medical examination and research at MakCHS through offering prayers as well as sensitize people about willful/consented whole body donation.
Professor Mwaka explained that globally, sources of whole bodies for medical education and research are got through willed whole-body donation, unclaimed bodies in hospitals, imported bodies, executed persons among other means. In Uganda, unclaimed bodies in hospitals are used for medical as determined by the Uganda National Rules in the Penal Code Act of 1957.
In 2012 International Federation of Anatomy Associations (IFAA) recommended voluntary donation as the desirable and the only acceptable source for acquiring bodies. Almost all Africa countries and some European countries lack national body donation programs.
Speaking at the event, Professor Bruce Kirenga, Principal – MakCHS thanked Professor Mwaka for the insightful presentation. He welcomed Professor Buyinza to MakCHS and for accepting to attend despite the late invitation. He recognized the presence of the staff present and support towards the college activities.
Professor Kirenga underlined the importance of biomedical science under which human anatomy falls in medical education. ‘Biomedical sciences play a key role, once someone in grounded in the area, then he will be a good doctor’, he said.
The Principal also stressed that during his term of office operation efficiency will remain key ingredient for service delivery as well as rebuilding and rehabilitation of teaching and learning facilities. ‘Works to make the Biochemistry laboratory a model lab has commenced with a contract awarded to service provider; the refurbishment will be in phases’.
Professor Buyinza Mukadasi thanked the College, Human Anatomy department and the students for organizing the commemoration. ‘The amount of joy I have this morning, we should have done this a long time ago’, he said.
He expressed happiness at this commemoration for the silent teachers who unknowingly give so much to medical education and therefore mankind. He advised that community engagement to create awareness about the need for whole-body donation, regulatory compliance, and alignment to best practices.
He noted that disciplines like medicine is more like charity because medical practitioners give so much of themselves. ‘The number of people attending this ceremony is show of love for the discipline and commitment to the calling’ he said.
Professor Buyinza reiterated the commitment of Makerere University management to support MakCHS endeavours including this culture of commemorating the silent teacher. ‘Well-trained and season doctors are a result of the process explained here and the absence of bodies affects the quality of education provided and therefore the doctors produced’, he added.
Candles for the cadavers were lit and services representative of Anglican, Catholics and Muslims were conducted to remember the souls of the departed and wish them a peaceful rest. Ordinand Cosmas Ddembe for Anglican, Father Valentine Amuneke for Catholic and Dr. Haruna Kiryowa for Muslim preached the importance of respect for the dead and sacrifices of the dead for advancement of research and education in the medical field and health services.
Giving closing remarks, Professor Mwaka noted that setting up whole-body donation programs in Africa requires a holistic approach involving education, cultural sensitivity, legal structures, and partnerships with medical institutions.
Reasons why Africa has failed to establish body donation programs:
- Low awareness and willingness to donate bodies.
- Cultural and traditional beliefs
- Religious beliefs
- Fear of mishanding bodies
- Lack of legislation/ ambiguous regulations
- Lack of institutional policies and standard operating procedures
- Institutions should be encouraged to hold Services of thanksgiving or commemoration for those who have donated their bodies for medical education and research.
The following is required to change the current status:
- Cultural sensitivity and awareness
- Community engagement and awareness creation
- Educational campaigns
- Developing legal and ethical frameworks
- Building partnerships between hospitals and medical institutions
- Establishing local body donation systems i.e.,
- donation registration process,
- consent documentation,
- Logistical infrastructure necessary for the
- donation process.
- Effective communication, public trust,transparency.
- Training and professional development of healthcare providers.
- Global collaboration and funding: to share knowledge, best practices, and resources.
- Government support
- Funding and incentives
- Inclusion of body donation in national health strategies.
In a decisive step toward ending HIV as a public health threat by 2030, Uganda on Thursday, May 29, 2025, officially launched the third Uganda Population-based HIV Impact Assessment (UPHIA 2025) survey, a nationally representative household study expected to provide updated measurements on the status of the HIV epidemic by the end of the year.
The effort is led by Uganda’s Ministry of Health (MoH), with technical assistance from Makerere University School of Public Health (MakSPH), Uganda Bureau of Statistics (UBOS), Uganda Virus Research Institute (UVRI), and the U.S. Centers for Disease Control and Prevention (U.S. CDC), funded by the U.S. government through PEPFAR.
The Population-based HIV Impact Assessment (PHIA) surveys were first launched in 2014 as a global initiative at the International Center for AIDS Care and Treatment Programs (ICAP), based at Columbia University’s Mailman School of Public Health. Supported by the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR), through the U.S. CDC, the surveys have been conducted in at least 15 high-burden countries globally, including Uganda.
Led by national Ministries of Health, the PHIA surveys provide robust, population-level data on HIV prevalence, incidence, and viral suppression, offering a clear picture of epidemic trends and the effectiveness of national responses. They are designed to track progress, identify persistent gaps, and inform strategies to reach epidemic control, in line with global targets, including the fast-approaching goal of ending AIDS as a public health threat by 2030.
In Uganda, this survey was first rolled out between August 2016 and March 2017. The second followed in February 2020 but was disrupted by the COVID-19 outbreak, continuing through to March 2021. Both rounds were supported by ICAP at Columbia University, which provided technical assistance to strengthen data collection systems, improve laboratory infrastructure, and build national capacity to design, implement, and analyse the two national HIV surveys.
What sets UPHIA 2025 apart is the shift in technical leadership to Ugandan institutions for this third survey, reflecting local capacity to lead rigorous, high-quality public health research. For UPHIA 2025, Makerere University School of Public Health, in partnership with the Uganda Bureau of Statistics and the Uganda Virus Research Institute, is providing technical leadership to the Ministry of Health, alongside U.S. CDC. Implementation began with initial recruitment and training of over 300 field teams that begun on May 19, 2025, ahead of their nationwide deployment for data collection starting this June.
The first survey (UPHIA 2016) was an important milestone in informing Uganda’s national HIV response. This survey, concluded in 2017, measured, among things, the viral load suppression at the population level and provided household-based HIV testing and counselling, with results returned to participants and those who tested positive referred to care. The survey also assessed HIV incidence, HIV and syphilis prevalence, as well as hepatitis B infection rates. These findings would offer nationally representative data to track Uganda’s progress in controlling the HIV epidemic at both national and regional levels.
The next survey, UPHIA 2020, building on past success, was again executed with technical leadership from Columbia University’s ICAP, working with Uganda’s Ministry of Health alongside UVRI, UBOS, regional referral hospitals, local governments, and the U.S. CDC. It offered useful insights that showed encouraging progress, indicating that up to 88% of people living with HIV in Uganda at the time knew their status, 98% of them were on treatment, and 90% had achieved viral suppression. These results reflected momentum toward the UNAIDS global 95-95-95 targets, ensuring that most people living with HIV are diagnosed, treated, and have the virus under control, and advancing the broader goal of ending the epidemic by 2030.
Since the release of these findings nearly five years ago, which helped shape national HIV programming in Uganda, the country has made notable progress, but challenges remain. The UPHIA 2020 findings reported major gaps in testing coverage, particularly among young people and men. The results were also instrumental in identifying service delivery shortfalls and guiding decisions on resource allocation, program design, and policy. Yet today, Uganda remains one of the most heavily burdened countries in the world, with over 1.5 million people living with HIV and over 50,000 preventable new infections recorded per year.
It is this trend that Uganda’s Ministry of Health is working urgently to reverse. Launching UPHIA 2025 at the Ministry’s headquarters in Kampala on May 29, 2025, amidst great hope and expectation among the participants, Uganda’s Minister of Health, Dr. Jane Ruth Aceng Ocero, noted that the long-anticipated and previously delayed survey had arrived at such a critical moment. She welcomed UPHIA 2025 as both a measure of the country’s resilience and a guide for the final stretch toward ending AIDS by 2030, now just a few years away.
“The UPHIA 2025 survey comes at a strategic time to help us recalibrate and refocus our efforts,” the Health Minister said, underscoring the importance of its outcomes. “This will be Uganda’s final population-based HIV survey before 2030, the target year for ending AIDS as a public health threat. The findings will serve as a baseline for tracking our progress toward this national and global goal. They will also guide the next phase of strategic planning, ensuring that the final push toward 2030 is grounded in robust and reliable data.”
This third round of the survey will be carried out in 6,685 randomly selected households across the country. The exercise will involve interviews with approximately 15,000 individuals aged at least 15 and selected through a national household listing by UBOS. Of those, around 14,980 are expected to provide blood samples for HIV testing and analysis of viral suppression and other health indicators. The survey will also include interviews with 1,300 children and adolescents aged 10 to 14, though no blood draws will be taken from this group. Participation is voluntary, free of charge, and requires consent from the head of each household.
Dr. Aceng explained that beyond providing updated estimates of HIV prevalence, incidence, and viral load suppression, and examining regional and demographic disparities, the survey, which will cover the rest of the year, will include a qualitative post-survey assessment component to gather insights from people living with HIV, particularly those not virally suppressed, to understand their challenges and strengthen support services. Also, for the first time, this survey will assess the burden of non-communicable diseases among people living with HIV and include focused interviews with adolescents aged 10 to 14 in Mid-North and Mid-Eastern Uganda, where viral suppression was reported to be lowest in UPHIA 2020.
These activities are made possible thanks to the development support from the U.S. government, which invested $10 million (about UGX 37 billion) for this survey. Speaking at the UPHIA 2025 launch, U.S. Ambassador to Uganda William W. Popp noted that the United States has partnered with Uganda for over three decades to help people live longer, healthier lives;
“The bulk of our annual support, approximately $500 million this year, is dedicated to health programs, making the U.S. government the largest single provider of health assistance to Uganda,” the Ambassador said. He added, “Through PEPFAR, the United States has played a major role in Uganda’s progress toward ending HIV as a public health threat. Since 2003, when Uganda became one of the first countries to implement the program, we have invested nearly three billion dollars—almost 11 trillion Uganda shillings—in HIV prevention, care, and treatment services, saving millions of lives and making both our countries safer from HIV.”
With the benefit of hindsight, Uganda’s early encounter with HIV in the 1980s marked the beginning of one of the region’s most severe epidemics. But over the decades, a determined national response, driven by political leadership, community mobilisation, collaboration and global support, has delivered measurable progress. In the recent past, adult HIV prevalence fell from 7.2% in 2010 to 5.1% in 2023. Among women, it declined from 8.5% to 6.6%, and among men from 5.8% to 3.6%. AIDS-related deaths dropped from 53,000 to 20,000 over the same period, with female mortality declining by 66% and child deaths by 77%.
All these gains, amidst the challenge, go to show what is possible with sustained commitment. What is more, throughout this long journey of Uganda’s battle with eradicating HIV, Makerere University School of Public Health has played a pivotal role. From the early work of Prof. David Serwadda, whose ground-breaking research during the initial detection of HIV helped shape Uganda’s early response, to last year’s 2024 landmark Purpose 1 study on the twice-yearly injectable Lenacapavir that proved 100% efficacy in preventing HIV infection, MakSPH has remained at the forefront of innovation, evidence generation, and policy influence.
That legacy continues today, with the School providing technical leadership to the Ministry of Health in the implementation of UPHIA 2025. At the launch, MakSPH Dean Prof. Rhoda Wanyenze expressed pride in the School’s role as a trusted partner in Uganda’s fight against HIV and other public health challenges. She noted that for over 70 years, during which the School has existed, MakSPH has helped shape the country’s public health landscape through rigorous research, training, and policy support, anchored by a strong, long-standing partnership with the Ministry of Health and partners.
She also noted that the collaboration between Makerere University and the U.S. CDC has helped build national capacity in surveillance and epidemiology, while also strengthening Uganda’s ability to lead high-quality, large-scale national surveys, asserting that:
“The partnership between Makerere University and CDC has not only helped build national capacity in surveillance and epidemiology, but has also strengthened our ability to lead high-quality, large-scale national surveys. After two decades of joint work, we are proud that UPHIA 2024–2025 is now a fully Ugandan-led effort. This is critical to the sustainability of the skills and knowledge generation to inform our local response.”
The survey builds on MakSPH’s experience conducting similar national studies, including those on tuberculosis, prison health, family planning, schistosomiasis, and non-communicable diseases such as the STEPS survey. It will leverage the School’s strong capacity in research and impact evaluation, both in Uganda and across the African region, with a firm commitment to delivering high-quality data guided by the same rigour and integrity that have defined our work over the years, Prof. Wanyenze affirmed.
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