Ellen Siedel lost her mother eight years ago, but Siedel’s work since that day has kept her memory very much alive.
A Bayou Gauche resident and lung cancer advocate, 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,” Siedel said. “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.”
Those seven months came in addition to an initial prognosis of six months to live, and after battling out of a coma that she’d fallen into just as Siedel moved back to Louisiana from Chicago. Siedel called the extra time she was given with her mother “amazing” and something she is truly grateful for.
“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,” Siedel said.
Following her mother’s death, emotions began flooding in.
“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,” Siedel said. “So that is why I feel it so necessary to (participate in) 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.”
Siedel has also lost two friends to lung cancer since her mother’s passing, both in their 30s, and two other family members have also been diagnosed, further fortifying her drive to be an advocate.
“It’s the No. 1 killer of both men and women – lung cancer,” Siedel said.
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.
There’s always strength in numbers – and personal stories and accounts, Siedel believes, goes much further than showing statistics alone.
“Anyone can show a graph, but when you put a face to a problem, it makes people think, ‘Hey, she looks like my cousin, or my aunt, or your mom looks like my mom,’ and you can relate. It gives a human side of an issue that’s so broad in our country”
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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