Health
Ugandan sickle cell researchers keep pace with aging patients
Article courtesy Fogarty International Center
September/October 2024 | Volume 23 Number 5
Until recently in Uganda, most children with sickle cell disease (SCD) never celebrated their fifth birthday—only 30% lived past this milestone. This low survival rate was mainly due to inadequate health care interventions for these children, plus lack of widespread newborn screening, explains Dr. Sarah Kiguli , a professor at Makerere University College of Health Sciences. Things are different today. Over the past decade, the East African nation has instituted a policy of screening newborns while strengthening strategies to manage their health. This means more children with SCD are growing into adolescence and adulthood.
Challenges still exist, says Kiguli. For example, the community and district facilities where many Ugandan children are born cannot provide comprehensive services, including newborn screening. Another issue: the risk of SCD complications related to kidneys, lungs, heart—almost all organs—grows higher as patients grow older, yet scientific research in Uganda hasn’t caught up with the reality of these longer lives. As a result, teens and adults with SCD don’t get “the care they deserve,” says Kiguli.
“It’s very painful for us pediatricians to see our patients encounter challenges and problems when they transition to adult care.”
Renewed research focus
Despite years devoted to children’s health, Kiguli believes it’s time to prioritize studies exploring appropriate SCD management in teens and adults. “We need solutions that address all the patients’ needs, including reproductive health, as they transition out of childhood.” She’s spearheaded a multidisciplinary research training program for researchers focused on the needs of people with SCD at all ages: Enhancing Research capacity for Sickle Cell Disease and related NCDs across the Lifespan in Uganda (ENRICH).
“Among our PhDs, we don’t have anyone from pediatrics—and that’s fine,” says Kiguli. Importantly, the researchers are trained as a group to amplify the benefits of multidisciplinary collaboration. “We’ve been working in silos—pediatricians alone, physicians alone, social scientists alone—that won’t help us address the comprehensive needs of these patients.”
Methodology has also been given sufficient consideration. “We provide both individual and team mentorship from the beginning,” said Kiguli. Monthly meetings help trainees develop personal development goals and career path plans in the hope they will continue in the field. The program also provides research training to health professionals, such as medical doctors, laboratory personnel, and nurses, who are not necessarily doing degree programs, “so those who manage patients routinely might also benefit,” said Kiguli.
South-to-South unity
For the project, Makerere University has partnered with Busitema University, located in eastern Uganda, where “prevalence of the sickle cell trait is as high as 20%,” says Kiguli. (Sickle cell trait refers to when a person has inherited one mutated allele of the sickle cell gene, not two.) This local prevalence contrasts with about 13% prevalence elsewhere in the country. Studying the disease in a high burden locale is highly relevant, because results may influence policy and treatment guidelines.
Kiguli has other reasons for collaborating with Busitema University, which is less than 15 years old. “We want to build capacity at this young institution since our colleagues there have less chance of doing research than we at Makerere do.” Working and supervising trainees together will give Busitema’s faculty much-needed experience, while providing opportunities for faculty at both universities to learn from each other. Kiguli also hopes the new collaboration will advance progress made as result of the universities’ past partnerships. “Capacity must be built in a sustainable way,” says Kiguli.
“It’s important to work collaboratively and not competitively—this is just as important for Makerere University as it is for Busitema University.”
ENRICH trainees talk about their projects
Dr. Jackline Akello
Dr. Jackline Akello, PhD candidate
Dr. Jackline Akello, PhD candidate
My project is “Sickle cell disease in pregnancy: Experiences in provision and access to care and adverse pregnancy outcomes at Mbale and Kawempe Referral Hospitals.” As an obstetrician and gynecologist, I work as a lecturer at Makerere University and provide clinical care at the two national referral hospitals. I have encountered significant challenges in managing pregnant women with sickle cell disease (SCD) due to a number of healthcare navigation challenges. Additionally, the diverse cultural beliefs associated with SCD in Uganda affect access to care and ultimately outcome and quality of life for the patient.
By October, I will have started the enrolment of 161 pregnant women with confirmed SCD for my project. These participants will be followed throughout their pregnancies to track maternal and fetal complications, including stillbirths and low birth weight. Their experiences with the healthcare system will also be explored. As a Safe Motherhood champion, I have been focusing on hypertensive disorders in pregnancy, including pre-eclampsia, but this October at the Safe Motherhood Conference I will discuss the effects of SCD during pregnancy with the Ministry of Health. One of the endpoints of my study is to improve care for pregnant women who have SCD to enhance their pregnancy experience and outcomes.
Dr. George Paasi
Dr. George Paasi, PhD candidate
Dr. George Paasi, PhD candidate
My project is “The Clinical Epidemiology, Spatiotemporal Patterns and Disease Modifiers of Severe Malaria among Children with Sickle Cell Disease in Eastern Uganda.” Uganda ranks fourth among countries with high burden of SCD and is in the top 10 with respect to malaria burden. Eastern Uganda has the highest burden of both diseases. My project addresses this dual burden of SCD and malaria in eastern Uganda—I want to decipher the SCD-malaria syndemic in this region.
I’m a medical doctor, I have a master’s in public health, and I just finished a fellowship in infectious disease, epidemiology, and biostatistics. I’ve worked at Mbale Clinical Research Institute for the last 10 years. Previously, I worked on an NIH-funded trial in Africa called Realizing Effectiveness Across Continents with Hydroxyurea (REACH) as a medical officer, and now I’m embarking on this PhD training. My hope is that the findings from my study will improve the identification of patients with SCD at risk of adverse outcomes when they get malaria. I also want to identify, through spatial temporal analysis, hotspot locations that require priority interventions. I also want to gain skills as an independent researcher in SCD and make a meaningful contribution to this field.
Dr. Anita Arinda
Dr. Anita Arinda, PhD candidate
My project is “Prevalence, associated factors, course and impact of major depressive disorder in adolescents with SCD in Mulago National Referral Hospital.” We have limited data on mental health of adolescents with SCD, so that’s why my project mainly looks at depression in adolescents (ages 10 to 17).
In our setting, we are fortunate that children with SCD live past their fifth birthday thanks to improved health care, but this presents new challenges. During adolescence, patients enter a crucial stage where they’re trying to develop their identity, yet they’re also beginning to understand the implications of their condition—that having this serious health condition cuts their life short. I want to understand their experiences. How does depression in adolescents with SCD differ from depression in adolescents without SCD? We know that sickle cell disease causes inflammation, so does that contribute to their depression? How does depression affect clinical outcomes, if at all?
If we can understand the underlying mechanisms of depression in teens with SCD, then we might find new ways to manage their care (as opposed to conventional treatment with antidepressants). I’ll do my research at Mulago National Referral Hospital, which has a clinic dedicated to children and teens with sickle cell disease. The clinic provides many services, but unfortunately no specialized mental health services. One day I hope that changes, so that children with SCD and depression can get help early.
Health
Makerere-Incubated Safe Bangle Technologies Wins Prestigious World Summit Award for Innovation Against GBV
By Joseph Odoi
In a groundbreaking achievement, SafeBangle Technologies, an innovation incubated at Makerere University, has won the prestigious World Summit Award 2025 for its groundbreaking contribution to the fight against gender-based violence (GBV) in Africa. This remarkable honor comes in recognition of the development and implementation of a real-time domestic violence reporting bracelet.
The award was presented to the SafeBangle team that was represented by Saul Kabali, Messach Luminsa, and Janet Christine Nabaloga from SafeBangle Technologies at the WSA Global Congress in Hyderabad, India, where Uganda’s innovation potential was proudly showcased on a global stage.
The award was conferred in the Inclusion & Empowerment category for Safe Bangle’s cutting-edge solution; a wearable safety bracelet designed to address the pressing challenge of gender-based violence (GBV) across Africa.
The SafeBangle is a smartwatch-like, real-time domestic violence reporting bracelet that allows users to send SMS alerts via a single button press. Its core mission is to create a safer, more secure environment for women and children in Africa through innovative, affordable tech solutions.
According to Saul Kabali and Messach Luminsa, the innovators behind SafeBangle from SafeBangle Technologies, hosted at the Resilient African Network Lab. This award is very timely and a recognition that cements the importance of community rooted technology.
The team further stated that ‘’This award is a powerful affirmation of our mission and refuels our commitment to empowering Ugandan women and girls through innovation and technology. It influences our next steps by opening doors to new partnerships, increasing our credibility, and accelerating efforts to scale the SafeBangle nationally. We’re now more equipped to positively impact the daily lives of Ugandan women and girls through our SafeBangle bracelet.
To further the innovation, the team has called upon government to support the Safe Bangle Innovation
‘’Governments can support us by providing funding, facilitating policy support, and creating collaborative platforms for innovation. NGOs can help with grassroots outreach, and connect us to potential donors and funders interested in solving Sexual and Gender Based Violence amongst vulnerable communities; and tech partners can enhance scalability through infrastructure, data insights, and capacity building.
Moving forward, the team emphasized the importance of uniting innovation, partnership, and purpose to scale impact. “As we empower communities, invest in local solutions, and promote collaboration, we can transform how technology protects and uplifts women and girls across Uganda,” added the award-winning team.
The Story Behind the Safe Bangle Bracelet Innovation
According to the Safe Bangle innovators Saul Kabali and Messach Luminsa , ‘’The inspiration behind SafeBangle came from a deeply personal place. ‘’We heard countless stories of women who couldn’t call for help during moments of danger. We were deeply affected by the story of Aisha, a young woman in a rural village who was attacked while walking home alone at night. With no way to call for help, she felt helpless and vulnerable. This incident made us realize the critical need for immediate reporting alert tools, accessible to women like Aisha. We knew technology could play a crucial role and this incident awakened a strong desire in us to create a solution’’
To Makerere University School of Public Health’s Dr. Juliet Kiguli, who collaborated closely with the team during the rollout of the bracelet, this award is a vote of confidence in the work of Makerere University, whose core function focuses on teaching, learning, community engagement, research, and innovation, all contributing to the university’s efforts in addressing domestic violence.
‘’The award-winning innovation stems from the findings of a longitudinal study led by the Makerere University School of Public Health.
While carrying out a study after the Covid-19 Pandemic, we identified gaps when it comes to reporting and response to Gender Based Violence (GBV) among women in informal settlements. Therefore, we used to incorporate the SafeBangle intervention to solve the problem of lack of affordable and immediate reporting mechanisms for violence using a bracelet that reports violence in real time
We’re excited about the progress so far, and with this recognition, we hope that more like-minded partners will join us to scale this initiative and ultimately help make the world a safer place for all.” Added Dr Kiguli of the Safe Bangle innovation potential
The research team, comprising Dr. Juliet Kiguli (Principal Investigator), Dr. Roy Mayega (Deputy Chief of Party, RAN), and Dr. Agnes Nyabigambo (Study Coordinator), piloted the bracelet under the PEER (Partnerships for Enhanced Engagement in Research) program with support from USAID and the National Academies of Sciences.
A consortium of partners, including SafeBangle Technologies, Makerere School of Public Health/RAN , the Medical College of Wisconsin, and Somero Uganda, implemented the rollout of the Domestic Violence Real-Time Reporting Bracelet. The initiative was supported by USAID and the National Academy of Sciences in Washington, DC. Key contributors to the project included Dr Juliet Kiguli Roy Mayega from Makerere University School of Public Health, Dr. Kelly Robbins, Dr. Lina Stankute-Alexander, Dr. Brent Wells, Dr. Melissa Trimble, and Uganda’s Dr. Gloria Kasozi at USAID. Wisconsin Madison Medical University’s Prof. Julia Dickson-Gomez was also a collaborator.
In terms of the acceptability of the SafeBangle innovation as a solution to GBV, the team has piloted the technology with more than 1,000 users, resulting in a 63% reduction in response times
During the event, SafeBangle Team participated in the “Equity by Design” panel, sharing insights on inclusive technology development with global experts including Dorothy Gordon, Abhishek Singh from India’s Ministry of Electronics and IT, Baroness Beeban Kidron, and representatives from UNESCO and WE Hub.
About SafeBangle Technologies
SafeBangle Technologies is a Ugandan social enterprise hosted at Resilient African Network Lab focused on addressing gender-based violence through innovative safety solutions. The company combines wearable technology with an interactive web platform to provide real-time reporting of violence and physical assaults, even in areas without internet connectivity. Founded in 2018, SafeBangle operates with a mission to make safety accessible and affordable for vulnerable populations, especially women and children.
Health
A Humble Petition from the Marabou Storks of Kampala to His Excellency, President Yoweri Kaguta Museveni
Your Excellency,
We send you warm greetings from the skies above Kampala — from your old, bald-headed friends, the Marabou Storks, or as we are fondly called, the Kalooli. We are not the prettiest of birds, with our wrinkled faces, hunched shoulders, and sharp beaks, but we carry an important duty. Where others see waste and decay, we see purpose. We are nature’s cleaners, recycling what would otherwise rot and cause harm.
Some count us among Africa’s “Ugly Five,” alongside hyenas, vultures, wildebeests, and warthogs, but we take no offense. Beauty was never the Creator’s mission for our mission, but service was. We glide quietly between life and death, keeping the balance, cleaning the mess, and doing the work that must be done.
Today, we come to you not with complaints, but with a plea for partnership, to protect our shared home and ensure a cleaner, healthier Uganda for all. We still remember the day in 2008, Mr. President, when you gave the Uganda Wildlife Authority and the Kampala Capital City Authority instructions to “kindly relocate us” from the esteemed grounds of State House, Nakasero. We don’t harbor angry feelings. Truly. We realized back then, as we do now, that not everyone finds our odd looks or the noble scent that naturally results from a lifetime of cleaning your lovely nation appealing.
Your Excellency, we are modest. And forgiving. We maintained our composure even when we were discussed in Parliament in 2020, when honorable members referred to us as “health threats” and asked that we leave the Parliament gardens. We birds, after all, literally have thicker skin!
We are better citizens now. Thanks to Makerere University‘s kind hospitality, we have discovered a new haven. We express our deep thanks to Vice Chancellor Professor Barnabas Nawangwe for preserving the ancient trees, the very canopies that now provide us with protection, generation after generation. Students here lovingly refer to us as “the real professors of Makerere,” observing us as we keep a watchful eye on campus life with our sage, steady gaze. Some people think it’s a blessing to see a Kalooli before an exam. We take selfies with other people. We have kind of turned into little celebrities, sir. We appreciate the tranquility, love and peace you provided, with your comrade freedom fighters. They bring uhuru to these trees, and our kids pray for you every day for more life.
However, we come before you today not just to reminisce, but to raise important concerns not for ourselves alone, but for the survival of Uganda’s fragile ecosystem.
We are concerned about the growing crisis in waste, plastics, and environmental decay.
Your Excellency, you are a man who loves numbers. Allow us to present some:
- 768 metric tons — that is the amount of food waste produced DAILY in Kampala alone.
- 65% to 79% of solid waste in Kampala landfills consists of food waste.
- The dairy industry in Uganda loses $23 million annually from waste alone, according to the Food Rights Alliance.
- 135,804 tons of plastic waste generated in the Kampala Metropolitan Area recently.
- 42% of that waste remains uncollected, leading to clogged drains, flood risks, pollution of wetlands, and of course, diseases.
- Shockingly, 10% of this waste ends up in Uganda’s precious water systems!
Your Excellency,
It might surprise you but it’s true. Between 2018 and 2021, Uganda produced 12,330 tons of recycled polyethylene (rPET). And that’s not all conservative estimates predict a 91% increase in production between 2022 and 2025, should imports stay the same.
Mr. President, we Marabou Storks have served loyally as your unpaid, unsung environmental officers. While your citizens discard waste carelessly, we fly across the city, scavenging, sorting, and managing organic decay. We are your frontline solid waste managers, yet without uniforms, pensions, or even a simple “thank you.”
We join you in mourning the tragic loss of life that occurred at Kiteezi Landfill. We experienced devastation because the birds that live there consider that place their territory. We directly observed your people’s struggle to survive while they navigated hazardous unstable waste piles. Our deepest condolences go out to the families who lost loved ones and to every Ugandan citizen. The disaster served as a harsh reminder that waste mismanagement impacts people directly beyond just environmental concerns. Working together as environmental custodians we ask you to take action to prevent more deaths from occurring beneath waste mountain piles.
Just for context, Mr. President, since you fondly like science, here is the scientific truth about us
You may recall Dr. Derek Pomeroy and Mr. Michael Kibuule, distinguished researchers at Makerere University, who in 2021 published the history of our kind in Uganda. They noted:
- Over 1,200 nesting pairs once graced Kampala city alone.
- Over 800 Marabous nested at Makerere University.
- Uganda likely hosts the largest urban colony of Marabou Storks in the world.
Dr. Pomeroy and Kibuule should receive Katonga medals because we recognize their devotion to us. They have loved us. Dr. Pomeroy first came to Uganda in 1969 to work in Makerere University‘s Department of Zoology. He developed deep affection for us and demonstrated excellent understanding. He has written affectionately about us. He knows we are innocent. Dr. Pomeroy maintains his affiliation to Makerere University while conducting independent research as both a Zoologist and an ecologist.
Mr. President, in the beginning, our existence was in the untamed savanna. We transitioned to urban areas alongside human development to assist with cleanup duties rather than to create any disturbance. We came to clean up the areas where you discarded bones and waste. Ronald Norman Magill stated that despite being part of Africa’s “Ugly Five,” we remain crucial to ecosystems because our simple and gritty nature is what makes us indispensable. Our role includes feeding on dead animals and decomposing matter to prevent diseases and sustain soil health through silent and selfless recycling of life.
Your Excellency, here are our humble pleas to you, Our President
- Please urge your people to plant trees.
Our homes are disappearing completely. Sky scrapers are popping up everywhere we used to patch. Your Excellency, we merely ask that you recognize our role and protect our habitats; we are not opposed to development. In order to locate nesting sites, we now have to travel a considerable distance between Kiteezi, Lubigi, and the University. For all creatures, feathery, four-legged, and two-legged—healthy trees translate into richer soils, cleaner air, better rainfall, and cooler cities. - Please strengthen plastic waste management.
Your laws Mr. President, the 10-Year Restoration Plan, the National Environment Act 2019, and the Extended Producer Responsibility rules are all positive steps, but laws that do nothing are just as useful as wings on a tortoise. Please advocate for implementation, particularly in the areas of public education on responsible dumping and enforcement. We implore you to encourage your people to stop illegal dumping, sort their waste, recycle, and treat the environment as a gift rather than a trash can. - Please invest boldly in waste infrastructure.
Your Excellency, - If Parliament can enjoy a small patriotic “thank you” of the legendary “100 silver coins” for safeguarding peace, surely a few crumbs can reach us, the Marabou Storks; Kampala’s tireless, unpaid sanitation workers, as a token of national gratitude. Imagine what a few billion shillings for KCCA, for trucks, bins, and civic education could achieve. A cleaner Kampala would mean less wandering for us and less embarrassment for you when tourists meet our noble, bald-headed selves. At least then, we would feast in dignity, not after cross-country marathons over scattered rubbish.
- Support Community Environmental Heroes.
Students, youth, schools, churches, and communities are already doing cleanup drives. Support them with grants, incentives, recognition, and encouragement. Empower a new generation of eco-warriors.
Mr. President, we, Marabou Storks are no longer the nuisance you once sought to relocate.
We are living proof that resilience, adaptation, and hard work can co-exist even in a changing, urbanized world.
All we ask now is for you and your government to join wings with us, birds and humans alike to clean up Kampala, to green Uganda, and to create a legacy that future generations will bless you for.
Let us work together, so that Uganda shines not under mounds of waste, but under canopies of trees, rivers flowing freely, and skies where even the humble Kalooli can soar proudly.
Yours sincerely,
The Marabou Storks of Kampala
The writer is a science and health communicator
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