Gabriella Ssanyu Ndibalekera (L) after her cancer treatment right is Marianne Kusiima who had cancer of the kidney and after treatment, she has been in remission since 2022. PHOTO/BEATRICE NAKIBUUKA
Despite significant medical advancement globally, cancer continues to be a leading cause of death among children in Uganda. The complexities of diagnosis, treatment and access to care reveal a crisis that demands attention and action.
The Uganda Cancer Institute (UCI) registers approximately 650 children with cancer every year, but due to various challenges, many are unable to complete their treatment. Those whose parents and caretakers endure the challenges associated with cancer treatment usually celebrate their victory over cancer by walking down a red carpet every September.
At the onset of the pandemic in 2020, two-year-old Gabriella Ssanyu Ndibalekera had a low-grade fever. Her mother, Salma Mirembe, says, “We took her to TMR Hospital in Kampala where her blood count tests showed low blood levels. Dr Henry Ddungu, the haematologist diagnosed leukaemia and referred us to UCI for further management. On the day the country was put under lockdown due to Covid-19, my daughter started her cancer treatment.”
On their way to UCI, the residents of Nakanyonyi in Mukono District, would be stopped and questioned since people were not allowed to move. Fortunately, Gabriella was feeding through nasal tubes, and many times, the police would clear them to move.
“She was admitted for the first three weeks, but when she was discharged, we had to return to UCI every week for treatment. It was a requirement for us to have a letter from the RDC, but one day, we forgot to renew it and the police would not let us travel,” she recalls.
However, Mirembe was determined not to go back home because she did not want her child to miss treatment. It was this persistence that helped her Ssanyu celebrate her victory over cancer in 2022.
Gabriella had a rare type of leukaemia and was on chemotherapy for almost three years. Today, at six years old, she is on a quarterly review to monitor the cancer. Mirembe remarks that cancer is a very isolating disease that takes away the social life of the patient and the caretaker.
“Luckily, I had a supportive family,” she adds.
Kusiima’s journey
When she was five and a half years old in 2020, Marianne Kusiima developed a swelling on her stomach. Her mother, Maria Gwokyalya, was referred to several paediatric clinics that failed to diagnose her until she was referred to the UCI.
“When she was diagnosed with cancer of the kidney, I did not believe it. I kept going to several hospitals and laboratories hoping to get a different diagnosis but in vain. Fortunately, the nurses at the UCI counselled me and I came to terms with it,” Gwokyalya recalls.
In January 2022, Kusiima started her treatment and would travel to the hospital every week.
“However, transport is one of the reasons many children are unable to complete their cancer treatment. Many live far away and cannot afford the weekly transport fares,” Kusiima’s mother notes.
Kusiima is now nine years old and completed her treatment in 2023. She is, however, on long-term maintenance for cancer surveillance.
The growing concern
Globally, approximately 429,000 children and adolescents are diagnosed with cancer annually. The majority of these cases (around 90 percent) occur in low- and middle-income countries, with Africa accounting for nearly 40 percent. In Uganda, roughly 3,000 new childhood and adolescent cancers are diagnosed annually. However, only 30 percent of these children seek treatment at cancer centres in the country.
Brenda Barungi Banana, the patient support programme officer at Uganda Child Cancer Foundation (UCCF), notes that the UCI enrols about 650 new patients every year. The survival rate is between 20 to 40 percent with 57 percent abandoning treatment. Only 43 percent complete treatment.
The most common childhood cancers in Uganda include Burkitt lymphoma (a type of blood cancer), acute leukaemia (a type of blood cancer), Wilms tumour (kidney cancer), rhabdomyosarcoma (a cancer of the muscles), retinoblastoma (a cancer of the eye), and bone tumours (primarily in adolescents).
Although most childhood cancers can be cured with appropriate treatment such as generic medicines, surgery and radiotherapy, Dr Godwin Candia, the clinical coordinator at UCCF, says the three-year survival rate for childhood cancer in Uganda is as low as 20-30 percent.
“The lack of early detection remains a significant challenge in Uganda,” he adds.
Improvements in childhood cancer outcomes depend on the ability of the health system to coordinate early, ensure early case detection and referral, deliver intensive multimodal therapy, and provision of adequate supportive care for treatment-associated complications. Social support for the affected families is one of the facilitators of good cancer treatment outcomes.
In May 2017, the World Health Organisation (WHO) in collaboration with St Jude Children’s Research Hospital, launched the Global Initiative for Childhood Cancer, an initiative to increase the survival of children with cancer globally to at least 60 percent by 2030. Through the initiative, WHO and partners are supporting focus countries including Uganda, to strengthen their capacity to provide quality services for children with cancer.
Challenges
Early diagnosis of childhood cancer is crucial for effective treatment, but in Uganda, many children are not diagnosed until their cancer is in advanced stages. Symptoms are often mistaken for more common ailments, leading to delays in seeking medical care.
Dr Candia notes, “Symptoms of cancer, such as persistent fever, weight loss, or unusual lumps, can be attributed to less serious illnesses. This misunderstanding contributes to the delay in diagnosis and significantly impacts the child’s prognosis.”
Once diagnosed, the treatment journey is fraught with obstacles. The UCI is the primary facility for childhood cancer treatment, but it faces challenges such as inadequate facilities, a shortage of trained medical professionals, and a lack of essential medications. As a result, many families are forced to seek treatment abroad, which is often financially prohibitive.
