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.
Makerere University and the Aids Healthcare Foundation (AHF) Uganda Cares on July 30, 2025 held a meeting focused on establishing and strengthening collaboration between the two institutions in the fight against HIV/AIDS. The collaboration will particularly focus on prevention and care services for the University’s student population.
Speaking at the event, the Deputy University Secretary, Mr. Kizito Simon who presided over the meeting mentioned that Makerere University is involved in human capital development, aiming to create a healthy population alongside an educated one. “It’s not only good to have an educated population, but a healthy population as well,” he noted.
Mr. Kizito stated that the government supports various interventions in HIV prevention, care, and treatment, with the Makerere University Infectious Diseases Institute (IDI) playing a leading supportive role. On this note, he encouraged AHF Uganda Cares to equally come on board in order to strengthen the fight against HIV/AIDS.
The Deputy University Secretary outlined the Makerere University strategic plan’s prioritization of engagement and partnerships with various sectors, including ministries, departments, agencies, international organizations, civil society, and the private sector in order to strengthen its research-led aspirations. He therefore encouraged Uganda Cares to support HIV AIDS services, including prevention, care, and treatment, and to collaborate in research and innovation, especially with faculty members already engaged in HIV AIDS-related research.
However, he highlighted the demographic vulnerability of Uganda’s young population, with 73.2% aged between zero and thirty years old, making them a high risk group for infections. “This is more than just a time bomb for all of us here, because this is the population which we are hoping to be productive in the later years,” he pointed out.
Mr. Kizito expressed appreciation for the wellness clinic initiative, which is poised to provide accessible sexual reproductive health services to students at no cost. On this note, he stressed the need to publicize these services to ensure students are aware of the available resources and are supported to overcome shyness and reluctance to seek help.
The 91st Guild President Makerere University, H.E. Ssentamu Churchill James with concern noted the increasing levels of irresponsible behavior among young people, which has led to the high risk of contracting STDs, and welcomed initiatives proposed by AHF Uganda Cares.
He further highlighted the recent concluded HIV awareness campaign with Guild Leaders and the Director of the Makerere University Hospital. The campaign was aimed at educating students about HIV and other STDs, emphasizing the importance of knowledge and awareness.
H.E. Ssentamu pointed out that the first year students who are soon arriving on Campus are a key target audience for these awareness efforts. He stressed the importance of abstinence but also emphasized the need for protection in case of emergencies.
The 91st Guild President suggested the possibility of counseling for those who have already contracted STDs. “I hope we can have an attachment of counselling for people that have already contracted diseases,” he stated.
He took note of existing efforts such as the government’s stock of contraception and the presence of health ministers at every hall of residence. In this regard, he proposed a linkage between the initiative and these health committee members through the Guild Minister of Health Affairs to ensure continuity.
The National Medical Director-AHF Uganda Cares, Dr. Lubanga Augustine expressed gratitude for the opportunity to discuss collaboration with Makerere University. He particularly noted previous collaborations and the need to seize opportunities for future collaboration.
He highlighted that AHF Uganda Cares provides cutting-edge medicine regardless of the patient’s ability to pay and advocates for conducive policies to increase access to HIV and STI services.
Dr. Lubanga emphasized the importance of addressing the gap in young people’s access to health services particularly for sexual health issues. He noted that even parents and guardians often avoid discussing sexual issues contributing to a lack of education awareness among young people.
He pointed out that funding for HIV prevention has shifted towards treatment despite the need for continued prevention efforts. In this, he called for increased advocacy and partnerships to secure funding for health services particularly for young people. He appreciated past interventions such as installing condom dispensers in hostels and the need for renewed partnerships with university leaders.
Dr. Lubanga expressed willingness to collaborate with the University Hospital to ensure that no one is left behind in HIV and STI services. As a sign of their commitment, AHF Uganda Cares handed over condom dispensers and condoms to the university.
Dr. Byamugisha Josaphat, Director at the Makerere University Hospital emphasized the importance of prevention in health, through programs such as STI prevention, HIV early treatment, and health education “Prevention is better than cure,” he said. He highlighted that the hospital has got satellite clinics at the Makerere University Agricultural Research Institute Kabanyolo (MUARIK) and the Jinja Campus, serving a significant number of students, staff and the public.
The Director discussed the need for health education and information materials, including pamphlets and WhatsApp messages, to educate students and the public about HIV. “The university is already running health education programs for students and surrounding communities,” he stated.
Dr. Byamugisha further highlighted the importance of male circumcision as a preventive measure against HIV, which is already being offered at the university hospital. “We are aware that safe male circumcision can prevent about 60% of male HIV,” he explained.
He talked about the need for supplies and human resources for screening, emphasizing the importance of protecting the university community and surrounding areas. “The university hospital aims to go beyond just serving students but also help the broader community,” he added.
The Hospital Director emphasized the importance of peer-to-peer interaction between students and staff to enhance health education and support as this could help the students open up more on sexual issues which may not be the case with a person who is older than them. He further explained students undertaking internship at the Makerere University Hospital already have the advantage of easily talking to the staff about these issues.
Dr. Byamugisha highlighted the need for post-exposure prophylaxis (PEP) drugs and counseling, ensuring that people understand the importance of taking these drugs. He suggested specific targets for collaboration, such as supporting a medical officer and providing services rather than cash. “Many a time we don’t need cash, we need in-kind support through a person or provision of a service,” he stated.
In his final remarks, he appealed for support to make services more accessible to students and reiterated the importance of collaboration to protect students and the broader community.
The Deputy Principal, College of Engineering, Design, Art and Technology (CEDAT)-Prof. Kizito Maria Kasule, highlighted that 75% of young people contracting HIV are between the ages of 14 and 24, indicating a need for targeted prevention efforts.
He pointed out the poverty among girls as a significant issue contributing to the spread of HIV because they look at the sexual related practices as means of earning a living which has led to the high spread of these infections.
Prof. Kasule emphasized the importance of involving different religious institutions to sensitize people about the organization’s work and counteract negative perceptions. He suggested that the organization should collaborate with various religious institutions. “Even Born Agains are involved in the sexual relationships but cannot come out to express themselves,” he added.
He stressed the importance of open discussions about gender and sexuality free from fear and trouble, and he raised the need for sensitization within and outside the institution.
Coordinator of the HIV program at AHF Uganda Cares, Mrs. Mbabazi Martha, introduced the girl’s act program which aims to empower young women to address issues affecting them at various levels, from primary school to national policy. “The program encourages young women to raise their voices and influence policies that affect their lives,” she commented.
She highlighted the success of the program in engaging young people and influencing policy changes at different levels of governance, such as the distribution of sanitary pads in schools and communities.
Mrs. Mbabazi emphasized the importance of skilling centers for young girls to gain economic independence and avoid exploitation. She highlighted the success of webinars and dialogues in raising awareness and influencing behavior change. In closing, she called for continued collaboration with various stakeholders to support the empowerment of young people and address the root causes of HIV infection.
Mr. Amojong Trevor, a representative from AHF Uganda Cares, introduced the “Boys to Men” initiative program to address poor health seeking behavior and lack of testing among boys. He emphasized that the need to empower girls should go hand in hand with focusing on boys to prevent the spread of HIV.
He mentioned the low demand of female condoms and suggested demonstration on how to use them to increase awareness and usage.
About AHF Uganda Cares
Aids Healthcare Foundation (AHF) Uganda Cares an NGO based in the USA operating in 47 countries, including 14 in Africa. AHF Uganda Cares started in 2002 in the Masaka region and now operates in 32 districts with over seven health facilities. The organization supports over 203,000 lives on HIV treatment and has tested over 7 million Ugandans for HIV.
The organization offers HIV prevention services, including the ABC (Abstinence, Be Faithful, Condom) approach, and provides about 6 million condoms annually.
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