Reflections on ASCO

In early June, I attended the annual meeting of the American Society of Clinical Oncology (ASCO) as a Patient Advocate. Held every year in Chicago, ASCO draws close to 40,000 oncologists and other medical professionals from around the world to McCormick Place in downtown Chicago for five days of presentations and discussions, all related to discoveries in cancer therapies.

Attending as an advocate & survivor

Unlike some other conferences, there is a fee for Patient Advocates to attend ASCO of $295. This rate doesn’t distinguish between a paid Patient Advocate attending as an employee of an organization and a volunteer Patient Advocate who is also a cancer patient. For volunteer advocates such as my friend Jill Feldman and myself, it is often difficult to attend such conferences because of registration fees plus hotel and other travel expenses.

For ASCO this year, however, we were fortunate to be able to work with CEC Oncology, a division of Creative Educational Concepts (CEC), based in Lexington, Kentucky. We met Joni Fowler, the owner and founder of CEC, through Twitter when she heard about the founding of the EGFR Resisters Lung Cancer Patient Group. CEC Oncology provides oncology education for clinicians in various practice settings with the goal of improving patient care. With respect to EGFR+ lung cancer, CEC Oncology and the EGFR Resisters have similar goals so we decided to collaborate.

Advocating for the EGFR community

As a result of a grant secured by CEC Oncology, Jill and I were able to attend ASCO and lead an offsite EGFR Think Tank concurrent with the conference to discuss unmet needs in EGFR+ lung cancer, both in the clinic and in research. We presented aggregate data gathered from our survey of members to major thought leaders in the EGFR lung cancer community, including four medical oncologists, a pathologist, a radiation oncologist and a nurse and then brainstormed ideas for meeting gaps in testing, treatment, and research. It was an incredible experience and an invaluable way to gather direct, useful information. We have many avenues we are planning to follow-up with on the behalf of the EGFR Resisters in the coming months.

In addition to the Think Tank, we were also able to have separate individual meetings with key oncologists and others in the EGFR community since ASCO brought them all together in the same location. We attended sessions and poster presentations and thus had the opportunities to talk to researchers with novel ideas. As a result of evening receptions hosted by pharmaceutical and other healthcare companies, there were lots of opportunities to network more informally and share the goals and work of the EGFR Resisters with others. There was tons of excitement about the work we and other patient-led oncogene-focused lung cancer groups are doing.

Exhausted but energized

Jill and I returned home from ASCO exhausted from the five days, but energized about the future and the opportunities the EGFR Resisters will have for making a difference in patients’ outcomes.

Editor’s Note: We are extremely saddened to say that on June 23, 2024, Ivy Elkins passed away. Ivy’s advocacy efforts and writing continue to reach many. She will be deeply missed.