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Project PRIORITY: Why it matters to the EGFR-positive lung cancer community

*December 2019*

Project PRIORITY (Patient Reported Initiative On Resistance, Incidence, Treatment studY), is a collaboration between LUNGevity Foundation and the EGFR Resisters—a grassroots, patient-driven community dedicated exclusively to changing EGFR-positive lung cancer into a manageable chronic disease.

Goal of Project PRIORITY

To understand unmet needs of the EGFR-positive lung cancer community.

Project PRIORITY was kicked off in April 2019 with an international, longitudinal survey aimed at understanding the diagnostic and treatment journey of EGFR-positive patients. Preliminary results (the study is ongoing) were presented two international lung cancer conferences:

  • IASLC’s 20th World Conference on Lung Cancer (WCLC) in Barcelona presented by Ivy Elkins
  • 2019 North America Conference on Lung Cancer (NACLC) in Chicago presented by Jill Feldman

The Community Webinar was designed to showcase results of Project PRIORITY to the EGFR-positive lung cancer community. We are grateful to the lung cancer patients and caregivers who took the time to participate in Project PRIORITY.  Without you, the study wouldn’t exist!

The Webinar included presentations from Jill and Ivy and was moderated by Dr. Upal Basu Roy of LUNGevity Foundation.  A summary of the main findings of Project PRIORITY is listed below.

  1. First, patients are not receiving biomarker testing, the initial step to accessing precision medicine. Biomarker testing is required to identify the right patient to be matched to the right treatment at the right time. Results from the EGFR-positive lung cancer community demonstrate that only around 40% patients in the US and 10% patients outside the US received some form of comprehensive biomarker testing, either as part of their diagnosis, or at progression or recurrence.


  1. Second, EGFR-positive patients have a much lower history of active tobacco exposure (only 16% report active tobacco exposure) and a much higher history of passive tobacco exposure (35%), consistent with previous published studies, indicating that this community of patients has a different epidemiological profile compared to the general lung cancer patient population. This finding is especially important since it demonstrates that findings from Project PRIORITY may be generalizable to the EGFR lung cancer population.


  1. Third, patients are still not receiving the FDA-approved standard of care as their first drug (first-line treatment). Only 35% of patients in the US and 17% patients outside the US report receiving the standard of care, the EGFR TKI Tagrisso® (osimertinib).


  1. Fourth, an EGFR lung cancer diagnosis can significantly impact the quality of life of patients, as evidenced from the high rates of hospitalization seen in patients. Despite this population of patients being young (average age of diagnosis = 55 years) and relatively healthy (no major co-morbidities present), 63% of the respondents reported having undergone hospitalization.


  1. Fifth, 25% of respondents reported being diagnosed with clinical depression by their healthcare providers, highlighting that mental health needs for this community need to be addressed in healthcare practice.


  1. Ensure all patients have access to treatment regardless of race, age, socioeconomic status, etc. in both US and in other countries
  2. Improve attention to mental health needs and referrals for addressing patients needs
  3. Proactively manage side effects to reduce hospitalizations
  4. .Increase awareness on importance of testing and treatment sequence, including emphasis on not doing WBR before test results

The recorded webinar is now available for viewing on demand. Stay tuned for the longitudinal survey!