Over the past two decades, treatment for EGFR-positive lung cancer has transformed dramatically. The introduction of tyrosine kinase inhibitors (TKIs) has led to major improvements in survival for many patients. Yet, most of what we know about this disease still comes from clinical trial data—not from patients’ real-world experiences.
That’s why LUNGevity, in partnership with the EGFR Resisters patient advocacy group, set out to close this gap. Together, we conducted a large survey, reaching 425 people living with EGFR-positive non-small cell lung cancer (NSCLC). The study, the first of its kind, was designed with patients, for patients to better capture the realities of diagnosis, treatment, and side effects.
This study was conducted through the LUNGevity Patient-Focused Research Center (Patient FoRCe), which is changing the paradigm in lung cancer from assumptions about patient preferences to evidence-based conclusions about what patients value.
What We Learned
The survey revealed both progress and challenges:
- Treatment disparities remain. Despite many participants being newly diagnosed, some did not receive care that aligned with established treatment guidelines.
- Access is uneven. Even among a highly engaged group of patients, there were clear gaps in care and treatment options.
- Patient voice matters. By working directly with patients and caregivers to design the study, we gained insights into what really impacts their quality of life and decision-making.
Why This Matters
This research goes beyond numbers—it tells the story of how people navigate the healthcare system when faced with an EGFR-positive lung cancer diagnosis. Understanding these paths helps providers, researchers, and advocates identify where the system falls short and where support is needed most.
What’s Next
These findings are just the beginning. We’ve launched a new interactive website that allows patients and caregivers to explore the data more deeply. With user-friendly filters—such as age, gender, or treatment type—anyone can learn how others’ experiences compare to their own journey or the journey of a loved one.
The Impact
Because this project was co-created with patients and caregivers, its findings reflect real needs and real barriers. The curated information will help guide future advocacy, research, and care strategies—ensuring that more patients have equitable access to the right treatments at the right time.
Read the full study here: Access to Diagnostics and Treatment for People With Metastatic EGFR-Positive NSCLC: Lessons From Project PRIORITY