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.
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:
Uganda has released the preliminary findings of the 2025 Uganda Population-Based HIV Impact Assessment (UPHIA 2025), a national household survey that provides a current picture of the country’s HIV response and selected non-communicable disease indicators.
At the Uganda Media Centre today, 1 October 2026, the Minister of Health, Hon. Dr Chris Baryomunsi, released the preliminary results and said the evidence would guide policy, resource allocation and service improvement, with particular attention to people and communities with the greatest gaps. He urged Ugandans to know their HIV status, use prevention services and, when diagnosed, start treatment promptly and adhere to it.
Among adults aged 15 years and above, HIV prevalence was 5.9 percent, including 7.3 percent among women and 4.1 percent among men. Among adults aged 15–64, prevalence was also 5.9 percent, unchanged from 2020/21. Across the country, prevalence ranged from 1.3 percent in Karamoja to 8.0 percent in the South Western region. Of adults living with HIV, 85.3 percent knew their status; 99.1 percent of those aware were on treatment; and 96.5 percent of those on treatment had achieved viral load suppression. HIV-status awareness remains the central gap in the 95-95-95 cascade.
The survey also measured selected non-communicable disease indicators for the first time. Elevated blood pressure affected 15.5 percent of adults, while 24.8 percent had overweight or obesity and 0.9 percent had raised blood glucose.
Conducted from July to September 2025, UPHIA 2025 was the first population-based HIV impact assessment to be fully country-led. The Ministry of Health provided overall leadership, while Makerere University School of Public Health served as the prime implementing organisation, working with UVRI, UBOS, regional referral hospitals and local governments. PEPFAR funded the survey through the U.S. CDC.
Watch the UPHIA 2025 preliminary results launch:
https://www.youtube.com/live/QfHFBaJ-L-w
Read the UPHIA 2025 summary results:
https://drive.google.com/file/d/1nElGNwgcAcZyAo9CLCQKRpO2jJgyxjSc/view?usp=drive_link
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