The children’s cancer ward at the Kenyatta National Hospital.
When Kenyan children survive cancer, the fight does not end at remission. Instead, a
quieter, more insidious struggle begins – one fought in schools, communities, and even
families.
For 22-year-old
Kevin, life after leukemia treatment
was supposed to be a celebration. He had endured the agony of
chemotherapy, the sting of hair loss, and the loneliness of long hospital
stays. When he finally returned home to his rural village near Eldoret, the
welcome was cold. “People wouldn’t shake my hand,” he said. “Some thought I could still give them
cancer.”
At school, some classmates
refused to share desks. Some teachers eyed him warily, as if he was dying. Kevin’s scars were
visible, both the
physical ones from IV ports and the invisible ones etched deep in his psyche.
“One boy told others my family had made a deal with evil spirits to keep me
alive,” he recalled.
For Achieng, a soft-spoken osteosarcoma survivor, it was the church that
turned its back. “During service, they prayed for healing but didn’t include
me,” she said.
Researchers who encountered
such stories said they are
no longer just anecdotal. They
have published a study published in the Journal of Adolescent and Young Adult Oncology, titled “Social Reintegration and Stigma Among Childhood
Cancer Survivors in West Kenya”, giving voice to what many childhood cancer survivors (CCS) endure in silence.
Studies
have reported that cancer is often regarded as a death sentence by both the
patients and the community. “This stigma can negatively impact CCS’ social reintegration
and affect employment, relationships, and social activities throughout their
lives,” wrote lead author Susan N. Mageto, from
Kisii University, and her
colleagues.
“This study aimed to explore the survivors’
experiences of social reintegration and stigma at the school, workplace, and community
levels. Marital prospects were also examined.”
The researchers interviewed 26 childhood cancer survivors (but they were
all above 18 years during the interview) who were diagnosed
with cancer between January 1, 2010 and December 31, 2019 at Moi
Teaching and Referral Hospital in Eldoret, with at least one-year event-free survival after treatment completion.
All the survivors had
missed school during treatment, and 62 per cent had to repeat a class. “Some survivors reported
discrimination due to hair loss, amputation, and change in skin and hair
color,” the authors noted. “Schoolmates believed cancer was contagious or that
they had HIV.”
At MTRH, the most common paediatric cancers are
acute lymphocytic leukemia (ALL), Burkitt lymphoma, nephroblastoma (kidney) and
acute myeloid leukemia (AML), according to Ampath, an academic medical partnership from the US that
partners with MTRH.
The emotional toll was significant. “Fifty percent
reported negative feelings about their school experience, including fear,
loneliness, sadness, hopelessness, and even shame,” the study revealed.
One
survivor was avoided because people thought that his father was a cultist and
hence was sacrificing him.
Another
survivor explained that his cousins were not allowed to eat, sleep, or even
play with him. Survivors were also excluded from community activities such as
farming. Grandparents blamed a survivor’s mother because it was believed that
cancer was inherited from her side of the family.
Bullying was common. “Some people were against them
returning to school because they believed cancer survivors were contagious,
bewitched, or would be feared by fellow students,” the report added.
The stigma extended beyond school walls. While most
survivors could confide in their parents only a third could share their history with neighbours or
extended family. “Many (96 per cent) could
not speak openly about cancer to all members of their community,” the authors
stated.
Reasons for silence were deeply rooted in cultural
beliefs. Some communities viewed cancer as a curse or something inherited.
Survivors’ hopes for employment and relationships
were also clouded by stigma. Just 19 per cent were employed, with many citing physical limitations due to cancer
treatment. One survivor noted has been rejected for jobs because employers
think he is weak or unreliable.
Marital prospects were a pressing concern. “Some
survivors felt they were less likely to get married because others thought
childhood cancer was heritable or that their family was cursed,” the
researchers reported. One married survivor shared, “It was challenging to get a
spouse because ladies believed I had a short lifespan.”
Overall, a third feared
they were incapable of having children, and some even worried that their entire
family’s marital opportunities were tainted by their cancer history.
The stigma faced by survivors is compounded by the
grim reality of childhood cancer survival rates in Kenya. While high-income
countries boast survival rates of 80–90 per cent, Kenya’s rates languish between 20 per cent and 30 per cent, with
some studies reporting figures as low as 19 per cent
This stark disparity is attributed to late-stage
diagnoses, limited access to specialised care,
and financial barriers that hinder treatment completion.
A study conducted at Moi Teaching and Referral
Hospital highlighted that 34 per cent of
paediatric cancer patients abandoned treatment, primarily due to financial
constraints and lack of health insurance . Even among those who commenced
treatment, event-free survival was just 29 per cent,
underscoring the systemic challenges in paediatric oncology care.
The
World Health Organization’s (WHO) Global Initiative to improve the survival of
six common and curable childhood cancers to 60 per cent by 2030 is likely to
further increase the population of childhood CCS in low- and middle-income countries
(LMIC)
Survivors in the current study offered constructive paths forward. “They
recommended community and school education, peer support groups, and
counseling,” the study said. Survivors emphasised that cancer should no longer be whispered about
or feared.
Schools, they suggested, should “educate students
on cancer, its treatment, and its …and discourage
isolation, bullying, and discrimination.” They also urged teachers to respect
their privacy and not disclose their cancer history without consent.
Communities, in turn, should “allow them to share
their experiences and avoid discriminating against them.” Religious
institutions, too, were urged to play a healing role through spiritual guidance
and inclusion.
The study is co-authored by Nancy Midiwo and Sandra Langat of Ampath; Saskia
Mostert, Jesse Lemmen and Gertjan Kaspers of Vrije Universiteit of The
Netherlands; Terry Vik of Princess Máxima Center for Paediatric Oncology, The
Netherlands; and Festus Njuguna of Moi University.