Move Against Cancer Africa | September 2025
In 2024, Professor Bryant Lin, an esteemed primary care physician and educator at Stanford University, was diagnosed with stage IV lung cancer despite never having smoked. He’s a seasoned clinician who suddenly found himself on the other side of the consultation table, dependent, vulnerable, and uncertain. His diagnosis had a profound social and medical impact. He became aware of the severe communication, empathy, and support gaps that frequently remained unfilled in clinical care while he was a patient.
His narrative serves as a stark reminder that professionals can not only influence the healthcare experience. We require a fresh perspective that is influenced by the opinions of people who are unwell, their caregivers, and the activists who accompany them. Diseases including cancer, HIV, and uncommon ailments, are becoming more prevalent throughout Africa. However, the same people who are most impacted are frequently silenced by the institutions put in place to address them. Involvement of patients and carers in community education, research design, health policy, and service delivery is still minimal or symbolic. This is a public health failure, not just a lost chance. We learnt an important lesson from the HIV epidemic in the past: lives were saved when patient advocates and professionals worked together. Patient voices changed what was possible, from calling for fair access to antiretroviral medicine to changing stigma and influencing international health policy. Today, Africa needs the same transformative capacity to address rare and chronic diseases like cancer.
The Case for Collaboration
Research supports the idea that patient-informed health systems yield better outcomes. A 2025 study by Hamel et al. Highlighted the impact of involving diverse cancer survivors and advocates in developing the Patient-Informed Cancer Communication Scale (PICCS). This tool improved physicians’ ability to engage in patient-centred communication, especially among racially diverse groups, an urgent need in many African contexts.
Similarly, Rodríguez-Laguna and colleagues, through a collaborative ethnographic study, mapped the experiences of patients with PROS (PIK3CA-related overgrowth spectrum). Their findings revealed critical barriers, delayed diagnoses, lack of specialist care, and unmet emotional needs. These insights are possible through the inclusion of patient and caregiver narratives and offer a roadmap for health system improvement.
Another recent international multi-stakeholder study on Fibrodysplasia Ossificans Progressiva (FOP) echoed the same theme: meaningful partnerships with patient communities drive better care pathways, access to research, and health equity. These findings cannot be ignored.
But perhaps the most glaring omission is in fungal diseases, an area grossly underfunded and overlooked in Africa. A recent commentary lamented the absence of patient voices in shaping research, funding, and policy. This silence must be broken. Patients battling fungal diseases, like those with cancer or rare conditions, have rich, lived experiences that must guide scientific and health system priorities.
Why This Matters in Africa
In many African countries, healthcare is still deeply hierarchical. Doctors are revered, and patients are expected to comply without question. While respect for expertise is important, it must not come at the cost of inclusivity and compassion. Patients and their caregivers are not passive recipients of care; they are experts in their own experience. They understand the daily toll of illness, the barriers to care, the gaps in information, and the emotional labour of survival.
At Move Against Cancer Africa (MACA), our mission is rooted in the belief that data alone is not enough. Our work is deeply informed by both scientific evidence and the real-life stories of patients who live with cancer every day. We recognise that behind every diagnosis is a human being navigating a complex journey, physically, emotionally, and socially. Too often, we see clinicians working in silos, policies developed without meaningful patient engagement, and public health campaigns that fall flat because they fail to amplify the patient’s voice. This disconnect drives our commitment to bridge these gaps through patient education, research, and laboratory support. By prioritising the lived experiences of patients and caregivers, we aim to create a system that not only treats disease but truly promotes the welfare, dignity, and empowerment of every individual affected by cancer.
A Call to Action
We can, and must do better.
Imagine an African healthcare system where advocates, doctors, and patients all occupy the same table, where survivors co-design the research, where methods of service delivery are informed by caregivers, and where lived realities are reflected in policies. It is feasible and already being tested in successful international initiatives. Therefore, it is not idealistic. Physicians need to be open to hearing. Advocates must not be marginalised; they must be encouraged. The involvement of patients and caregivers must be formalised by policymakers. Stories, not just numbers, must be accommodated by researchers. Ultimately, medicine is about healing people, not only about curing illnesses. Let’s dismantle the barriers that separate us. Let’s end the silence that keeps patient voices from being heard. Together, we can create an African health system that is robust, adaptable, and genuinely people centred.
Let us not wait for more physicians to become patients before we realise this truth.
Stay connected with MACA to learn more about our ongoing efforts to improve cancer care across Africa.
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Written by: Mr Caleb Egwuenu
