Prisca Githuka, Cancer Advocate, Founder of Pink Hearts Cancer Support Foundation, shared a post by on LinkedIn:
“Not a Doctor, But an Expert: The Power of Lived Experience in Cancer Care
Over the years, I have participated in numerous webinars, conferences and meetings as a person with lived experience of cancer. These are not just conversations. They are spaces where policies are shaped and decisions are made that directly affect patients’ lives.
In November 2025, I participated in the African Organisation for Research and Training in Cancer (AORTIC) Conference in Hammamet, Tunisia, through the support of Global Focus on Cancer (GFC) under their V.O.I.C.E initiative. I had the honor of sitting on a high-level panel alongside respected oncology leaders: Dr. Zainab Baguddu, President-Elect of the Union for International Cancer Control (UICC); Dr. Miriam Mutebi, President of AORTIC and Board Member of UICC; and Dr. Gladwell Kiarie, President of the Kenya Society for Haematologists and Oncologists (KESHO).
I felt confident on that panel because I knew I was fully equipped to contribute as one qualified by virtue of lived experience. I deeply appreciated that AORTIC and Global Focus on Cancer recognize the value of lived experience and understood that having me there was not symbolic, but necessary.
These moments matter. Not because of titles, but because they affirm that lived experience belongs in decision-making spaces.
Yet many forums remain dominated by clinicians and researchers, with very few people who have actually lived the disease. And yet, lived experience carries data no study can fully capture. Often, when someone like me takes a seat at the table, sometimes the assumption is made that we must also be doctors.
I always clarify:
I am not a medical doctor.
I am a cancer survivor-qualified by my lived experience.
My 12-year cancer journey has been my training ground. I have lived diagnosis, treatment, long-term side effects, inequities in access to care, stigma, financial toxicity, time toxicity and systemic barriers. These are realities that data alone cannot fully explain, especially in low and middle income countries.
I may not carry the title of clinician or clinical investigator, but I proudly carry the title ‘Qualified by Experience.’ That qualification brings insight no textbook can teach and no dataset can replace.
As a patient advocate, I will continue relentlessly to push for people with lived experience to be present where decisions are made….not as tokens, but as equal partners. Not as observers, but as co-creators of solutions.
Because without lived experience at the center, patient-centered solutions will always remain incomplete.”
Other articles featuring Prisca Githuka on OncoDaily.
