The 10th Anniversary National Advocacy Summit will be remembered as one of the most impactful and memorable gatherings of the lung cancer community to date. Not only did we have a record number of lung cancer survivors represented (nearly half of the 120 attendees!), but we also received more verbal commitments to support of the Women and Lung Cancer Research and Preventive Services Act than ever before.
Day 1 – LISTEN. LEARN. TRAIN.
On Tuesday, July 10, we hit the ground running with opening remarks from Laurie Fenton Ambrose, President and CEO of Lung Cancer Alliance (LCA), and Emily Eyres, Chief Operating Officer, which featured a sneak peak of LCA’s upcoming screening awareness campaign.
John Matthews, a lung cancer advocate who lost his mother to the disease, spoke about his efforts to raise awareness and funds for lung cancer through his organization, Ride Hard. Breathe Easy. Last year, he biked from Philadelphia to San Francisco in the name of lung cancer and, this year, he is encouraging the entire community to ride with him “virtually” during Lung Cancer Awareness Month in November. John is a great example of how one person can make a big difference.
Two panel discussions followed with some of the biggest names in cancer research and health policy. The first, “Trends and New Perspectives on Research,” featured leading experts: Shrujal Baxi, MD, Medical Director at Flatiron Health; Bruce E. Johnson, MD, Immediate Past President at the American Society of Clinical Oncology (ASCO); and Gregory C. Simon, JD, President of the Biden Cancer Institute. Not only did the panelists touch on the importance of patient-powered data and data collection, but they talked openly about their personal cancer experiences.
The second panel focused on the intersection of health policy and advocacy. “Moving the Needle: Collaboration to Advance Lung Cancer Research” featured: Amy Williams, Director of the National Cancer Institute’s Office of Advocacy Relations; Andrea Ferris, MBA, President of LUNGevity Foundation; Marielena McGuire, PhD, Program Manager, Lung Cancer Research Program, Congressionally Directed Medical Research Program (CDMRP); and Jim Pantelas, lung cancer survivor and longtime advocate. They touched on the importance of working together (across organizations and people) and actively participating in the process to educated policy makers and increase federal research funding for the disease.
Elridge Proctor, LCA’s Director of Health Policy, got personal with attendees in a training session on how to effectively share one’s lung cancer story. Best practices were demonstrated in a mock-congressional meeting, illustrating how different stories can support the various pieces of our “ask” on Capitol Hill, which was:
- Co-sponsor H.R. 4897/S.2358, the Women and Lung Cancer Research and Preventive Services Act of 2018
- Restore $20M in FY19 Defense Appropriations for Lung Cancer Research within the CDMRP
With this new knowledge at their fingertips, attendees broke out with their respective states to prepare for the next day’s Congressional meetings.
Day 1 concluded with a cocktail reception, featuring a motivational speech from Chris Draft, President and Founder of the Chris Draft Family Foundation.
Day 2 – HILL DAY
On Wednesday, July 11, the sun was shining, the teal was flashing and we were excited to hit the ground running! At the same time, a larger movement was underway across the country with the kick off of Advocacy Action Day, a “virtual Summit” offering tools to the lung cancer community to support and amplify the message of those on Capitol Hill.
The Congressional Briefing
We kicked off the day with a Congressional Lung Cancer Caucus briefing, “Lung Cancer: A Women’s Health Imperative,” featuring: Julie Renee Brahmer, MD, Co-Director of the Upper Aerodigestive Department at Sidney Kimmel Comprehensive Cancer Center, Johns Hopkins University; Sydney Yolande Barned, MD, Howard University Hospital; and Ella A. Kazerooni, MD, MS, Interim Chair, Professor of Radiology, Professor of Internal Medicine at Michigan Medicine University and Chair of National Lung Cancer Roundtable. The panel spoke about research on women and lung cancer (why are more and more young, never-smoking women getting lung cancer?), access to preventive services and public awareness and education campaigns—all key components of the Women and Lung Cancer legislation.
Capitol Hill Meetings
120 advocates from 28 states attended nearly 150 meetings on Capitol Hill, sharing their personal stories and communicating the needs of the broader lung cancer community. The LCA advocates are now seeing that 10 years of advocacy are yielding results. Representatives and staffers were more familiar with the devastating statistics around lung cancer and genuinely expressed compassion and a willingness to listen. A number of elected officials give verbal commitments to support the Women and Lung Cancer legislation and/or restoration of CDMRP Lung Cancer Research Program funds, and many indicated they would be joining the Congressional Lung Cancer Caucus. For elected officials not as versed in the lung cancer story, our advocates educated them on critical issues.
At one special meeting, Florida advocates observed the presentation of the 2018 Michael G. Oxley Congressional Leadership Award to U.S. Senator Marco Rubio (R-FL) for his dedication to lung cancer advocacy and his leadership in co-sponsoring the Women and Lung Cancer legislation.
The day of was a great success!
Advocacy Action Day
Both advocates on the Hill and at home were active on social media channels, broadening the message tenfold. Engagement on Twitter around the event hashtags, #LCSummit18 and #SaveHerLungs, was three times higher than our usual post engagement. Additionally, we saw a huge spike (5X more messages sent than our baseline) in emails and tweets sent directly to elected officials about the “asks.” We would never be able to impact change like we did without the help of advocates who took action all over the country.
The day concluded with a festive dinner and time for reflection. Two special advocates, Dana Quinn and John Matthews, received awards for their volunteer and leadership efforts. Each state had an opportunity to reflect on the most memorable moment of the day — some funny, some emotional, but all impactful. It was also announced that the 2019 National Advocacy Summit will be held in March 2019.
We said our goodbyes for now, with everyone knowing that the drum beat of our collective message will continue through our local efforts and beyond.
None of this could have been possible without the incredible people who make up the lung cancer community. We at Lung Cancer Alliance want to thank those who traveled from near and far to share their stories and communicate the needs of the greater community to our nation’s leaders. We also want to thank all those who supported our mission from home by participating in Advocacy Action Day. Every tweet, share and email amplified our message in the halls of Congress.