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.
Uganda has strengthened its ability to respond rapidly to Ebola and Marburg outbreaks once cases are confirmed, but delays in frontline detection, health worker exposure, emergency financing bottlenecks and incomplete implementation of lessons from previous outbreaks continue to undermine preparedness, a study has found.
The findings were presented today, October 6, 2026, during a country validation workshop convened by the Meeting Targets and Maintaining Epidemic Control (EPiC) project, to examine lessons from Uganda’s response to filovirus disease outbreaks. The study was undertaken by Makerere University School of Public Health and FHI 360.
Presented by Dr. Steven Kabwama, the synthesis examined Uganda’s experience with recurrent Ebola virus disease (EVD) and Marburg virus disease (MVD) outbreaks between 2000 and 2026, drawing particularly on After-Action Reviews from the 2017 Marburg outbreak and the 2019, 2022 and 2025 Ebola outbreaks. The work seeks to consolidate recurring strengths, weaknesses, innovations and lessons that had previously been documented separately.
Uganda has recorded 12 filovirus outbreaks over the 26-year period, including nine Ebola and three Marburg outbreaks, according to the research team. Among the four outbreaks examined closely were the 2017 Marburg outbreak in Kween and Kapchorwa, the cross-border Ebola outbreak in Kasese in 2019, the multi-district Sudan Ebola virus outbreak in 2022, and the 2025 outbreak whose index case was a health worker.
Strong systems after confirmation
Across the outbreaks reviewed, the synthesis found that Uganda has developed significant capacity to mobilise after laboratory confirmation. National and district task forces and technical response structures are activated quickly, supported by strong laboratory capacity, established coordination mechanisms and increasingly sophisticated surveillance systems.
The country has also built laboratory capacity around the Uganda Virus Research Institute, mobile laboratories, genomic sequencing, sample referral systems and the Results Dispatch System. Digital surveillance tools, Village Health Teams, survivor champions and established national and district coordination structures have further strengthened response capacity.
Detection remains a weak point
However, the findings point to a critical problem before confirmation: recognising a possible outbreak early enough.
For outbreaks originating within Uganda, the synthesis found that the period between a patient’s first presentation and confirmation ranged from nine to 27 days. This the study found is linked to low clinical suspicion and weaknesses in screening. Other recurring challenges included delayed access to emergency financing, infections among health workers, disruptions to essential health services, community mistrust and stigma, and limited follow-through on recommendations from previous After-Action Reviews.
Opening the workshop, the Dean, Prof. Rhoda Wanyenze, said understanding these delays requires going beyond identifying broad weaknesses to examining where response systems fail in practice.
“We can identify a broad challenge such as delayed detection from the literature, but your experience on the ground can help us understand the specific factors that create that challenge,” Prof. Wanyenze said while addressing district health officials from across the country.
“When we begin looking for solutions, we need to be able to target the actual problems rather than simply identifying broad challenges.”
The workshop brought together partners and colleagues from districts, including people directly involved in outbreak response, to validate the synthesis against frontline experience. Prof. Wanyenze noted that published literature, scientific papers and response reports cannot capture every operational reality, making practitioner experience essential to understanding where delays occur and what interventions have worked. Remarks validation workshop
Turning outbreak experience into continuous readiness
Among the priority actions proposed are stronger screening and alert systems for earlier detection; ring-fenced emergency financing and more reliable responder payment systems; routine infection prevention and control training; stronger occupational protection for health workers; continued investment in laboratories and genomic sequencing; and preparedness extending beyond districts traditionally considered outbreak hotspots. The study also recommends stronger community engagement and a formal mechanism to track and finance implementation of recommendations from After-Action Reviews.
Dr. Andrew Acero, Director of the EPiC project at FHI 360’s Uganda Office said the central challenge is ensuring that experience accumulated during successive outbreaks translates into lasting institutional capacity.
“The real value lies in ensuring that what we learn changes what we do. Our findings should inform policy, shape guidelines and training, strengthen systems and ultimately improve practice.”
He noted that preparedness cannot begin only after an emergency has been declared, but must be built through sustained relationships, systems and capacity before outbreaks occur. Remarks validation workshop
The EPiC project is led by FHI 360 with core partners including Right to Care, Palladium and Population Services International.
Uganda’s latest national HIV survey reveals lower viral suppression among adolescents and young adults living with HIV than among older adults, even as the country records substantial improvements in controlling the virus. The findings come from Uganda Population-Based HIV Impact Assessment (UPHIA 2025), a national household survey examining HIV prevalence and whether people living with the virus know their status, receive treatment, and achieve viral suppression.
Releasing the preliminary UPHIA 2025 findings at the Uganda Media Centre on 1 October 2026, Minister of Health Hon. Dr. Chris Baryomunsi called for earlier prevention and testing, particularly among adolescent girls and young women, alongside support for treatment adherence. “We must reach out to the young people, ensure that they have information, they test, take treatment, and adhere to the treatment guidance,” he urged.
Hon. Baryomunsi recalled how fear had discouraged testing during his university years: “I remember when we were at university, we went for testing at the university hospital. We sat there for three hours. Some of us left without even testing because it was scary.” Today, he explained, “even if you test HIV positive, you can be initiated on treatment, and you live normally like the rest of those who don’t have HIV.”
UPHIA 2025 was locally led under the Ministry of Health’s overall leadership, with Makerere University School of Public Health serving as the prime implementer, a role ICAP at Columbia University held in the previous two surveys. The Uganda Bureau of Statistics led sampling, while the Uganda Virus Research Institute and National Health Laboratory and Diagnostic Services led laboratory operations. Regional referral hospitals and local governments supported implementation, and the U.S. government provided US$10 million through PEPFAR, along with technical assistance from the U.S. CDC.
UPHIA collected data from July to September 2025 among people aged 15 and above, including those outside routine treatment services. Of 6,283 eligible households, 94.4% completed interviews. Researchers interviewed 13,801 people and tested 13,477 for HIV.
Testing followed Uganda’s national algorithm, with laboratory confirmation of positive samples, viral-load measurement, and checks for antiretroviral medicines to establish treatment use. Researchers weighted the estimates to account for the sampling design. Participants received counselling and results, and those who tested positive were referred for treatment.
Hon. Baryomunsi thanked participants and their families for welcoming survey staff and contributing their time, information and samples, without which the national evidence would not have been available.
National progress and the youth gap
The survey estimated HIV prevalence, which means the proportion of people living with HIV, at 5.9% among those aged 15 and above, corresponding to about 1.496 million people in this age group nationwide. Prevalence was 7.3% among women and 4.1% among men, ranging from 1.3% in Karamoja to 8% in the South Western region.
Among people aged 15 and above living with HIV, 86% had achieved viral suppression, meaning a low amount of HIV in the blood, measured in UPHIA as fewer than 1,000 copies per millilitre. Suppression stood at 69.3% among adolescents and young adults aged 15–24 living with HIV, compared with 89.9% among those aged 50 and above. These estimates cover people living with HIV regardless of whether they know their status or receive treatment.
HIV prevalence among people aged 15–24 was 1.5%, including 2% among young women and 1% among young men. Among young women, prevalence was 1.3% at ages 15–19 and 2.8% at ages 20–24. These differences support attention to earlier prevention and testing, although they do not establish when infections occurred.
The highest prevalence estimates occurred among middle-aged adults: 15.7% among women aged 40–44 and 11.7% among men aged 45–49. Lower suppression among young people therefore requires attention alongside the higher HIV prevalence among middle-aged adults. Comparing the same age group across both surveys, viral suppression among people aged 15–64 increased from 74.9% in 2020–21 to 86.1% in 2025, while HIV prevalence remained at 5.9%.
Diagnosis and the path to 2030
The treatment results identify diagnosis as the main national gap. Among people aged 15 and above living with HIV, 85.3% knew their status. Of those aware, 99.1% were receiving treatment; among those receiving treatment, 96.5% had achieved suppression.
The 95-95-95 targets aimed for 95% of people living with HIV to know their status, 95% of those diagnosed to receive treatment, and 95% of those receiving treatment to achieve viral suppression by 2025. Among people aged 15 and above, Uganda exceeded the treatment and suppression targets, while diagnosis remained below target. UNAIDS’s Global AIDS Strategy 2026–2031 retains these targets towards ending AIDS as a public health threat by 2030.
According to WHO, viral suppression protects health and helps prevent HIV transmission. Uncontrolled HIV weakens the immune system, increasing the risk of serious illness. With continued treatment as prescribed, sexual transmission risk is negligible when HIV remains suppressed but detectable, and zero when undetectable. The Uganda AIDS Commission estimated over 34,000 new HIV infections in 2025, underscoring the importance of early diagnosis, timely treatment, and sustained suppression alongside other prevention measures.
The demographic stakes are substantial. People aged 15–24 constituted 21.2% of Uganda’s population in the 2024 census. The country’s Fourth National Development Plan, covering 2025–2030, prioritises a healthy, knowledgeable, skilled and productive population and reducing HIV through primary health care. Protecting young people’s health, therefore, supports their participation in education, work, and national development; UPHIA helps identify where services need greater attention.
Turning evidence into action
The study’s conclusions identify three priorities: sustain treatment outcomes, find people unaware of their status, and improve suppression among younger people. Permanent Secretary Dr. Diana Atwine connected the findings to the Ministry’s planning.
“We do believe that these results are a true reflection of what is happening in our country as far as the HIV status is concerned, and we do believe that it will give us a very clear direction and the roadmap that we are going to take in the next five years to target and to get our targets achieved.”
Acting on these priorities requires funding for services and research. Hon. Baryomunsi outlined plans to target resources where needs are greatest, strengthen district services and align partner support with government priorities. Responding to journalists’ questions, he noted the government’s intention to increase domestic funding for the HIV response, including research.
“The HIV/AIDS response, including research and surveys such as this one, has largely been funded by partners in the past. The government of Uganda is committed to allocating more resources from our domestic budget to support the response and research,” he noted.
For the first time in the UPHIA series, the survey assessed selected noncommunicable disease indicators among people aged 15 and above: 15.5% had elevated blood pressure, 24.8% were overweight or obese, and 0.9% had raised random blood glucose. These screening findings align with the Ministry’s integration agenda and Hon. Baryomunsi’s call to bring HIV and chronic care services together to address people’s wider health needs.
Speaking at the release of the preliminary results, U.S. Embassy Chargé d’Affaires Mikael (Mika) Cleverley described UPHIA 2025 as the first Population-Based HIV Impact Assessment worldwide fully led and implemented by the country itself.
“The study was led by Ugandan scientists, Ugandan managers, Ugandan public servants, Ugandan field teams, from design to data collection to analysis. And this is what two decades of focused strategic U.S. foreign investments in the public health sector was meant to produce, is to reinforce Ugandan leadership and Ugandan-led efforts.”
At the survey launch on 29 May 2025, MakSPH Dean Prof. Rhoda Wanyenze highlighted the partnership’s contribution: “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.”
The Dean added: “After two decades of joint work, we are proud that UPHIA is now a fully Ugandan-led effort. This is critical to the sustainability of the skills and knowledge generation to inform our local response.”
UPHIA 2025 shows how far Uganda’s HIV response has advanced and where gaps remain. As the country works towards ending AIDS as a public health threat by 2030, reaching young people with testing, treatment, and continued care will be essential to extending those gains.
Read the full UPHIA 2025 summary results here:
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