2019 LCI Advocacy Summit Discusses the Stigma of Lung Cancer

On August 16 and 17, the Lung Cancer Initiative hosted the annual Advocacy Summit in Durham. Presentations centered around the theme of “Breaking the Stigma” associated with lung cancer. This theme allowed presenters to touch on a topic that is important to many, particularly lung cancer survivors.

The weekend began on Friday evening with Jennifer Garst, MD, Duke Cancer Institute, presenting “Lung Cancer 101.” Her opening presentation provided a brief background on the history of lung cancer and how treatment and research have progressed.

Cindy D’Ottavio, a lung cancer survivor in attendance “was shocked to learn from Dr. Garst that the original ribbon color designated for lung cancer was clear, as in invisible!” Dr. Garst’s presentation set the tone for an exciting weekend focused on breaking the stigma to ensure that lung cancer is never an invisible disease. The evening ended with a delicious dinner and fun round of trivia!

Saturday morning kicked off with opening remarks from LCI’s Executive Director, Paige Humble, followed by a presentation from Mohamed Mohamed, MD, PhD, Cone Health. Dr. Mohamed shared updates from the lung cancer research community and inspired attendees with the incredible advances and innovation he reported within lung cancer research.

Joan Schiller, MD, University of Virginia, introduced the concept of lung cancer as a stigmatized disease. Through referencing various research publications, she illustrated that “the stigma associated with lung cancer can not only be measured, but it can also be reduced.” Dr. Schiller is widely published and internationally recognized for her work in lung cancer clinical research; she did a wonderful job of communicating clinical research publications in a way that survivors and advocates could connect with, regardless of scientific background.

Nadine Barrett, PhD, MA, MS, Duke Cancer Institute, expanded the discussion with a presentation on stigma and implicit bias. As a medical sociologist, she highlighted the reality of each individual carrying their own implicit biases based on cultural backgrounds and experiences. Rather than deny stigmas that exist, Dr. Barrett urged attendees to recognize stigma in order to reduce it.

After a Q&A panel with the speakers, break-out sessions began for survivors and caregivers. The survivor break-out session was led by Timothy Williamson, PhD, MPH, MD Anderson. With a research background in chronic disease stigma, Dr. Williamson facilitated a conversation among survivors regarding how to act on the information presented throughout the day.

The caregiver break-out session was held at the same time by Elaine Whitford, Executive Director of the Center for Volunteer Caregiving. In Elaine’s presentation, she touched on the importance of self-care within the caregiver role. Elaine shared strategies for self-care and how to create an action plan to hold yourself accountable for self-care.

The Advocacy Summit left attendees energized and empowered. The expert presenters made clear that lung cancer is a stigmatized disease, but left the audience with ambition to break the stigma and provide hope for anyone affected. Dr. Williamson summed up the weekend well when asked what inspired him to speak at the Advocacy Summit:

“Engaging with all the attendees at the LCI Advocacy Summit is helpful for building collaborations among people with the shared vision of [reducing lung cancer stigma] through advocacy, community engagement, and research.”




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