Louisiana Lung Cancer Advocate Travels to D.C Seeking Research Funding

St. Charles Parish resident and lung cancer advocate Ellen Siedel visited Washington, D.C. to meet with her members of Congress during the American Lung Association’s LUNG FORCE Advocacy Day on March 29. As a part of the nationwide event, Ellen joined more than 40 other people across the country who have been impacted by lung cancer to ask lawmakers to support $51 billion in research funding for the National Institutes of Health (NIH), $11.6 billion in funding for the Centers for Disease Control and Prevention (CDC) and to support and protect Medicaid.

“Late in 2013, 930 miles apart, I sat on the other line of a phone call with my mom that changed our lives,” shares Siedel. “My mom had just been diagnosed with stage 4 lung cancer. I sat there that night, on the phone with her, trying to calm her down, to think positive. We were going to fight.”

“During the next year, we laughed, we cried, we fought over silly things. She moved in with my then fiancé (and now husband) and myself, and we resumed a normal life. The staff at the hospital helped us apply for healthcare coverage, which was the only way she was able to afford the very expensive lung cancer treatments. That coverage gave us an additional seven months of a normal-ish life.”

“Then one day, it wasn't normal. She went quickly, which when we look back at things, was better than any other alternative. In the end, she knew we were there, saw a picture of her grandsons, felt us hold her hand. We had gotten a full year together.”

“There are so many things that she isn't going to be here for - my wedding, watching her grand kids grow up, holding my hand as I give birth. And every day I wish I had more time – more time to laugh, cry, fight, hold her, hug her, kiss her. So that is why I feel it so necessary to be here for Advocacy Day. I am her voice and that of thousands of others who can't be here with us. I am her legacy, and I will be an advocate and champion every day so that, hopefully, another family doesn't have to experience that loss.”

During Advocacy Day, Siedel met with representatives from Senator Bill Cassidy’s, Senator John Neely Kennedy’s and Representative Troy Carter’s offices to share her personal experience with lung cancer and explain why investments in public health, research funding and quality and affordable healthcare are important to her.

The American Lung Association launched LUNG FORCE Advocacy Day in 2016 to ask members of Congress to support robust, sustainable and predictable federal funding increases for lung cancer research, prevention and quality and affordable healthcare. As a part of Advocacy Day, LUNG FORCE Heroes have succeeded in helping increase NIH lung cancer research funding by over 115%. Since 2016, more than 50 new therapies have been approved by the FDA to treat lung cancer—giving more hope to those impacted by this disease. In 2022, Heroes successfully urged Congress to extend funding for tax credits so more than three million Americans were able to keep affordable healthcare coverage through the federal and state marketplaces.

Siedel encourages others in Louisiana to advocate for lung cancer research and healthcare protections by contacting their members of Congress, which they can do at Lung.org/AdvocacyDay. Learn more about Siedel’s story and the LUNG FORCE initiative at LUNGFORCE.org.

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About the American Lung Association

The American Lung Association is the leading organization working to save lives by improving lung health and preventing lung disease through education, advocacy and research. The work of the American Lung Association is focused on four strategic imperatives: to defeat lung cancer; to champion clean air for all; to improve the quality of life for those with lung disease and their families; and to create a tobacco-free future. For more information about the American Lung Association, a holder of the coveted 4-star rating from Charity Navigator and a Platinum-Level GuideStar Member, or to support the work it does, call 1-800-LUNGUSA (1-800-586-4872) or visit: Lung.org.

About LUNG FORCE

The American Lung Association's LUNG FORCE initiative unites women, men and caregivers across the country to stand together against lung cancer, the leading cancer killer. Increased awareness about lung cancer, more education on lifesaving screening and more research funding are critical to fuel lifesaving breakthroughs. Through education, advocacy and research, LUNG FORCE works to provide hope to all those impacted by the disease and save more lives. Find out more at LUNGFORCE.org.

American Lung Association • 55 W. Wacker Drive, Suite 1150 • Chicago, IL 60601

1331 Pennsylvania Ave. NW, Ste. 1425 North • Washington, D.C. 20004

1-800-LUNGUSA (1-800-586-4872) Lung.org