Big Focus on Patients at the World Conference on Lung Cancer!

You would think there would be an emphasis on patients at all cancer conferences, wouldn’t you? After all, the end goal of attending a cancer-related conference for clinicians is, hopefully, an improvement in knowledge and practice related to patient care. However, I’ve noticed that not many conferences actually include patient-driven and patient-related topics in the main scientific conference track. Instead, these presentations are often segregated into an advocacy track and end up attended mainly by other advocates.

A conference for patients and advocates

This was not the case at the recent World Conference on Lung Cancer (WCLC) that I attended in Toronto in late September. Held annually, the WCLC is organized by the International Association for the Study of Lung Cancer (IASLC) and is attended by over 7,000 medical professionals (and patients!) from more than 100 different countries. Unlike many other oncology conferences, all lung cancer patients are granted free registrations.

The first session I went to at WCLC was the opening press conference, highlighting some of the important discussions that would occur at the 4-day meeting. Advocate and lung cancer patient Janet Freeman-Daily was invited to discuss the work of the patient-driven oncogene groups at this press conference, including the EGFR Resisters, ROS1ders, ALK Positives, Exon20 Working Group, and the RET Renegades. This was a huge opportunity to spread awareness for all of these groups! Emphasizing the importance of these patient-driven efforts, Janet’s presentation later in the conference, “Oncogene-Driven Patient-Groups: A New Era for Research Partnerships,” was included as part of a session in the scientific track of the meeting!

I was also thrilled to see that the opening plenary at WCLC, one of the most highly attended sessions of the meeting, was titled, “Patients First” and began with a talk by Lucy Kalanithi whose 36 year-old husband, Paul Kalanithi, was diagnosed with Stage IV EGFR positive lung cancer during his neurosurgical residency. Paul was working on his memoir, When Breath Becomes Air, when he died in March 2015. The memoir focuses on his struggle to understand the meaning of life and has become a #1 New York Times bestseller, translated into more than 40 languages.

My personal experience at WCLC

From a personal standpoint, the WCLC was a huge success as well. Jill Feldman, Ildi Medve and I represented the EGFR Resisters at the conference. Ildi participated in a panel discussion hosted by Bonnie Addario, Jill discussed her patient experience in the closing press conference, and we presented a poster titled “The EGFR Resisters Lung Cancer Patient Group: A Patient-Driven Initiative to Understand and Improve Treatments for EGFR+ Lung Cancer.” The poster summarized the data that we have collected from our EGFR Resisters membership survey and the key findings from our inaugural Think Tank held this past June. There was a lot of interest in us from both researchers and clinicians that resulted in the EGFR Resisters being mentioned in numerous presentations throughout the conference. We also were listed as a “Top Twitter Influencer” of WCLC as a result of sharing conference information in real time through our @EGFRResisters twitter handle.

In my opinion, the opening press conference and plenary truly set the stage for a very patient-focused and patient-friendly meeting throughout. I was able to meet other advocates and network as a result of an opening reception in the patient advocate lounge. The poster sessions at the end of each day in the exhibit hall included snacks and drinks, and truly fostered an atmosphere conducive to collaborations. It was a fantastic conference and I am very glad I was able to attend!

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.