NAIROBI, Kenya May 7 -There is a quiet danger in diseases that do not announce themselves loudly. They settle in, grow in silence, and by the time they are discovered, the battle has already tilted. In Kenya, Colorectal Cancer (CRC) is increasingly becoming one such disease, normally detected late, understood poorly, and endured often in isolation.
It is within this unsettling reality that Strathmore University, through its Centre for Research in Therapeutic Sciences (CREATES), alongside partners including the Africa Bioethics Network (ABN) and the Kenya Ostomy Association (KOA), undertook one of the country’s most comprehensive studies on Colorectal Cancer care. The Comprehensive Approach for Resilience and Empowerment in Colorectal Cancer Patients (CARE-CRC) project set out not merely to study the disease, but to listen to those living through it.
The study sought to understand what it truly means to live with colorectal cancer in Kenya.
Conducted across Nairobi, Nyeri, Eldoret, and Kisumu, the study brought together voices often absent from clinical conversations, including those of patients, survivors, caregivers, and healthcare providers. Through 76 survey responses, in-depth interviews, and Focus Group Discussions (FDG), a picture emerged of a healthcare system grappling with structural gaps rather than isolated inefficiencies.
Patients described long, winding journeys to diagnosis, often misdiagnosed multiple times with conditions such as ulcers, typhoid, or hemorrhoids before finally arriving at the truth. By then, for many, the disease had already progressed to advanced stages. In fact, late-stage diagnosis remains one of the most pressing challenges, with a significant proportion of patients only seeking or receiving care when symptoms become severe.
Perhaps the riveting finding of the CARE-CRC study is the overwhelming financial and emotional toll borne by patients and their families.
An estimated 83% of colorectal cancer survivors experience lasting financial strain, often extending well beyond treatment. Medical costs, lack of insurance coverage for essential services such as colonoscopies and ostomy supplies, and loss of income combine to create what many described as economic devastation.
One survivor’s reality echoes through the findings. “Survival does not mark the end of the struggle, it merely changes its shape.”
Psychologically, the burden is just as heavy. About 63% of patients reported fear of recurrence, while 59% experience chronic pain or fatigue, underscoring the lingering physical and emotional toll of the disease. Only about 40% felt able to fully enjoy life after treatment.
Yet, despite this, support systems remain fragmented or entirely absent.
“There is no CRC-specific support group I am aware of,” one healthcare provider noted in the study findings, an observation that underscores a critical gap in survivorship care.
For Caroline Shisubili Maingi, a co-investigator from Strathmore University, this research is is deeply personal.
“My interest in colorectal cancer research is deeply personal,” she reflects. “My father was diagnosed with CRC and passed away in 2019, at a time when awareness of the disease in Kenya was limited and access to specialized care was constrained.”
That experience became the seed for a research agenda grounded not just in data, but in lived reality.
Motivated by the gaps she witnessed firsthand, Maingi, working alongside Principal Investigator Prof. Bernhards Ogutu (CREATES), and co-investigators Mercury Angayo Shitindo (Africa Bioethics Network) and Salome Agallo (Kenya Ostomy Association), successfully secured funding from the National Cancer Institute of Kenya to undertake the CARE-CRC study.
What followed was an intensive, multi-site engagement with patients, survivors, caregivers, and practitioners, generating insights that are as human as they are scientific.
When the findings were presented at a stakeholder dissemination workshop in Nairobi in March 2026, the reaction was immediate and unequivocal.
“This study has given us the reality check… we are looking at mambo kwa ground (things on the ground). These are the people, the numbers, the statistics behind what is being reported,” noted one cancer advocate, emphasising how the research bridges the gap between statistics and lived experience.
Indeed, stakeholders across the board agreed that the study provides a foundation for action.
From calls to integrate survivorship into routine care, to strengthening primary healthcare systems for early detection, to expanding financial protection under universal health coverage, the recommendations advocate for a system that must evolve.
A particularly compelling shift that emerged from the discussions is the reframing of survivorship, not as a passive phase after treatment, but as an active, structured component of care. Survivors and stakeholders argued that survivors can and should play a central role as advocates, educators, and even patient navigators, guiding others through the system.
The CARE-CRC study arrives at a critical moment for Kenya’s healthcare landscape.
Colorectal cancer is no longer a peripheral concern, it is a growing public health challenge, increasingly affecting younger populations and exposing systemic weaknesses in detection, treatment, and long-term care.
Yet, within this challenge lies an opportunity.
By centering patient voices, integrating palliative care early, and embedding survivorship into policy and practice, Kenya has the potential to redefine cancer care as a commitment to dignity, quality of life, and holistic healing.
Yet the study also pushes the conversation beyond national borders. Is there a way the matter can escalate to the EAC region? Is there a way, in addition to early diagnosis, that a manufacturing plant for supplies can be constructed to deal with imports and expenses? The question is as urgent as it is ambitious. Because if the burden of colorectal cancer is regional, then perhaps the solutions must be too.
As the study makes clear, the solutions are not out of reach. The evidence is robust. The voices are clear. What remains is the will to act. And for patients and families navigating colorectal cancer today, that action cannot come soon enough.