In Uganda, the financial and emotional toll of sickle cell disease is immense, leaving families to struggle with social isolation, high medical costs, and uncertainty about their children’s futures. Growing awareness and support offer hope for better care.
About 80% of Ugandan children born with sickle cell disease do not survive past the age of five. Photo: Andrew S.
In 2000, Mabel Akiniya tragically lost her two oldest children, who passed away at the ages of one and four. “No one could tell me what was wrong,” recalls Akinya, who lives in a remote village in eastern Uganda. “They failed to thrive and were constantly sick and anaemic. I even sought help from prophets, hoping for divine intervention.”
Those years were the darkest of her life. Her children required weekly clinic visits; they suffered from jaundice, cried relentlessly from the pain, and were unable to eat. “I felt so alone, so weak. There were moments I prayed for God to take me and my babies because watching them suffer while I was helpless was unbearable,” Akinya says.
Compounding her despair was the fact her local community offered no support—only whispers that she had cheated on her husband and was being punished, that her family was cursed, or that she was a witch.
“It was horrible because even some health workers refused to attend to us,” Akinya says. “No one would touch my children or even look at them. Even family avoided us, as if we were contagious.” Her husband tried to be supportive, but he had to take a job in another town for better pay as the family was struggling to make ends meet.
After they died, Akinya demanded a postmortem and learned her children had sickle cell disease. Sickle cell disease refers to a group of rare inherited red blood cell disorders that can cause chronic pain and complications like severe bacterial infections, stroke, lung problems, and kidney disease.
Sub-Saharan Africa carries the greatest burden of sickle cell disease globally, accounting for 75% of all cases worldwide—which was estimated at 7.74 million in 2021. Uganda has the fifth-highest burden of sickle cell disease in Africa; a study published in 2016 estimated that at least 15,000 babies were born with the condition in Uganda each year. About 80% of these children do not survive past the age of five, according to a 2025 review.
For families like Akinya’s, the financial and emotional toll of caring for children with sickle cell disease can be devastating. The stigma surrounding the rare disease, compounded by ignorance and fear, often leaves families feeling isolated and unsupported.
Severe emotional toll on families
Approximately 300 million people worldwide have sickle cell trait, which occurs when they inherit one sickle cell gene and one normal gene. While those with the trait typically do not experience symptoms of sickle cell disease, they can pass the trait on to their children.
Sickle cell trait is more common among people of African descent. In the US, for example, 9% of African Americans carry the trait, compared to 0.2% of Caucasian people. In Uganda, the prevalence of sickle cell trait is estimated to be around 13%.
Sickle cell trait is more common in areas where malaria is endemic. It is believed that the genetic mutation causing sickle cell disease emerged in Africa thousands of years ago as a protective adaptation against malaria, a historically significant cause of death on the continent.
The emotional toll of sickle cell disease on families in Uganda like Akinya’s is exacerbated by a lack of awareness and understanding of the disease and its genetic causes. Parents often struggle with the uncertainty of not knowing their own sickle cell status, leading to feelings of guilt or regret if their child is diagnosed.
“Having sickle cell [disease] means being weak... Throughout my life I was given dates when I would die. First it was five years, then 10, 15, 22. I am now 50 years old.”
“Having sickle cell [disease] means being weak—you catch any germ or disease passing by and indeed I caught everything,” says Ruth Mukiibi, who was diagnosed with sickle cell disease when she was six months old.
Doctors advised her parents to separate so they would not have more children together. They were also told that Mukiibi wouldn’t live long, so they shouldn’t waste resources on her. She says her father, who had 13 healthy children from a previous marriage, responded by saying that if the family didn’t have much time, they should love Mukiibi for the little time they had with her.
In the meantime, they sought treatment from doctors, traditional healers, prophets, and clergy. “My parents, especially my father, took great care of me. I was in and out of hospital, but they kept at it, encouraging me to be a leader. My mother told me that having sickle cell disease was not a passport to be lazy or play victim,” Mukiibi says.
It was difficult to explain to her siblings why she was treated differently and this caused a lot of jealousy and resentment. “I chose the food we would eat and the vacations we would take, but this was just my parents trying to make my life as pleasurable as possible, not knowing whether the next crises would be my last on earth,” Mukiibi explains.
Against all odds, Mukiibi has defied expectations and continues to live with sickle cell disease. In 2000, she founded the Sickle Cell Association of Uganda; she now partners with the Ministry of Health and other stakeholders to raise awareness and combat the disease. “Throughout my life I was given dates when I would die. First it was five years, then 10, 15, 22. I am now 50 years old,” she says. “Instead of teaching economics with my [teaching] degree, I now teach about sickle cell disease.”
Medication remains out of reach
For many people in Uganda living with sickle cell disease, and for their families, the financial burden of treatment is crippling. The most common treatment regimen for sickle cell disease in the country is threefold: a drug called hydroxyurea to aid pain management and reduce the need for blood transfusions; folic acid, which is believed to help the body make more red blood cells; and anti-malarial medication, as mortality is high among people with sickle disease who become infected with malaria.
There are challenges with adhering to the regimen, particularly with hydroxyurea, which requires monthly check-ups where blood is drawn to monitor the performance of red blood cells. Many people are reluctant to undergo this monthly process and there is a high rate of default. Mukiibi does not take the drug because she is “tired of being pricked”. Instead, she takes a monthly dose of anti-malarial medication and drinks at least five litres of water every day to make sure her blood cells remain healthy and do not clog up.
“It’s really a dire situation for people with sickle cell disease, especially when living in rural areas with limited access to medical services. It’s by God’s grace that they survive.”
The biggest hurdle, however, is access to the drugs. Large referral hospitals sometimes administer them for free through the public health system, but there are often shortages. Some people with the means get them through private facilities, where they are obliged to pay USh2000 (US$53.25) for 250mg—typically enough for about two months. Traveling to health facilities adds to this cost.
In a country were 41% of people live on less than US$1.90 a day, not many of the 73% of the Ugandan population that lives in rural areas can afford to pay for treatment. “It’s really a dire situation for people with sickle cell disease, especially when living in rural areas with limited access to medical services. It’s by God’s grace that they survive,” Mukiibi says.
Sickle cell trait is more common in areas where malaria is endemic. Photo: Arne Hoel/The World Bank
Private health insurance coverage is typically limited to people in formal employment, and even for them, benefits are often capped and insurance rarely covers the full costs associated with long-term illnesses like sickle cell disease. Mukiibi laments that many insurance companies are hesitant to cover people with sickle cell disease due to the frequency of hospital admissions and the extent of treatment required. People also often find that insurance does not cover all their medical bills, and they end up paying higher premiums.
Normalising screening for sickle cell disease
The emotional and financial burden is compounded by another powerful factor: stigma. “Much of our work revolves around raising awareness because cultural secrecy and limited access to accurate information fuel myths and stigma,” Mukiibi says.
Dr Ann Akiteng, deputy director of the Uganda Initiative for Integrated Management of Non-Communicable Diseases (UINCD), agrees the impact of sickle cell disease extends beyond health, affecting the psychosocial and economic wellbeing of people and their families. In rural areas, in particular, she says the disease is often poorly understood, leading to stigma and misconception.
“We are supporting screening for newborns and encouraging people to test for traits before marrying, just as you would for HIV.”
Akiteng’s work with Package of Essential Non-communicable Disease Interventions-Plus (PEN-Plus) aims to address these challenges by providing vital resources for sickle cell disease screening, particularly in underserved rural communities.
“We are supporting screening for newborns,” Akiteng says, “and encouraging people to test for traits before marrying, just as you would for HIV.” She explains that in the past there were no counselling and testing sites, but PEN-Plus now has clinics and supports facilities offering these services.
Mukiibi, who is a mother of three children, says she made sure her husband tested for sickle cell trait before they got married. “It’s not something many people think about, but really it should be par for the course as part of pre-marital counselling,” she says.
Raising awareness of sickle cell disease
Akiteng admits there is a lot more to be done in Uganda to improve care delivery for people with sickle cell disease and reduce the associated emotional and financial burdens. There remains a lack of data to track national prevalence and identify where needs are greatest; facilities for testing, screening, and dispensing medication are also insufficient. Just like other non-communicable diseases (NCDs), there is a lack of financing for sickle cell disease research and treatment—which, Akiteng says, needs to change.
Efforts are, however, being made to address these challenges. The Ugandan government, in collaboration with the World Health Organization (WHO), is prioritising responses to sickle cell disease. Initiatives include establishing screening programs to identify carriers of the sickle cell trait and implementing public health campaigns to raise awareness and reduce stigma associated with the disease.
The government also collaborates with academics like Dr Philip Kasirye, a paediatrician with a special interest in blood disorders who has studied the cost-effectiveness of treatments for sickle cell disease and the complexities of managing it in low-income settings.
Healthcare workers treat a child with sickle cell disease; greater awareness will help reduce stigma. Photo: Derek Hensen
Kasirye works at the National Referral Hospital, which runs the largest and oldest sickle cell program in the country (begun in 1968). “Our patient portfolio runs to over 20,000 people registered with us,” he says. “At a national level we have a sickle cell coordinating office under the NCDs department and this coordinates care across the country.”
Moreover, because of the high burden of sickle cell disease in Uganda, prospects for gene therapy trials are emerging, which could potentially save and prolong the lives of people living with the disease.
Mukiibi says greater awareness and understanding of sickle cell disease will help to reduce stigma and ease the emotional toll endured by people and their families. What she hopes to see one day is posters or billboards promoting open conversation about sickle cell disease in Uganda. “Then I will know that at last sickle cell [disease] has a place at the table,” she says.
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