The history of Lung Cancer Alliance (LCA) traces back to Mort Liebling in 1979. Given a diagnosis of lung cancer, Mort reached out for information and resources for his struggle—and discovered there was none. So he built his own rehabilitation program and released a brochure of his exercises, “Spirit and Breath.” In the process he found an entire “invisible” cancer community also looking for compassionate support.
As word of “Spirit and Breath” spread, Mort began representing the lung cancer community at meetings. He also became a symbol of hope and compassion, and a voice for those impacted by the disease.
One of the many people who reached out to him was Peggy McCarthy, who had become aware of the lack of treatment and resources available to the lung cancer community through her work developing educational programs for healthcare professionals and the public. A working relationship and a friendship blossomed. And, as his health began to decline, Mort asked Peggy to carry on his work.
The Alliance for Lung Cancer Advocacy, Support, and Education (ALCASE) was founded in Vancouver, WA, in 1995 just before Mort’s death. Its aim was to advocate for increased awareness and to provide psychosocial support and education about the disease. ALCASE’s first actions were launching a newsletter entitled Spirit and Breath in honor of Mort, a toll-free information hotline and Phone Buddy Program, a peer-to-peer mentoring and support service. ALCASE also hosted major lung cancer symposia in ten US cities providing continuing education to physicians, nurses and pharmacists caring for people with lung cancer and received funding to create a comprehensive manual on lung cancer for patients and their families. In addition, ALCASE began to advocate for increased research funding at the National Cancer Institute.
The advocacy efforts took off in earnest in 1999 when two-time lung cancer survivor Sheila Ross convinced ALCASE that the only way to truly accelerate increases in survival rates was to be at the center of the policy discussion. A former congressional staffer with two decades of experience on Capitol Hill, Sheila became the first advocate to walk the halls of Congress to bring attention to the needs of the lung cancer community and to speak out about the importance of early detection. (Read more about Sheila: Hometown Hero: Sheila Ross of Eastport, A Tribute to Sheila Ross.) In 2004, she was instrumental in relocating the organization to Washington, DC, and restructuring and rebranding it as Lung Cancer Alliance. Sheila also enlisted the help of her friend and former U.S. Senate staff colleague Laurie Fenton Ambrose to serve as President & CEO.
Together, Sheila and Laurie worked to establish lung cancer as a national health priority. They fought hard to combat the stigma and misconceptions about the disease and they pressed for early detection and treatment research. They also made screening for lung cancer a core organizational priority with burgeoning research proving the lifesaving benefits of screening with low-dose CT for those at risk.
Over time, they made progress. Thanks to Sheila and Laurie’s tireless advocacy, new research pipelines were established and funded. New scientific frameworks were created to guide lung cancer research strategies. Coverage and reimbursement for lung cancer screening were secured. A light was shone on the disparate impact of the disease on men and women. LCA also brought to light the impact of lung cancer on the underserved, the military and military veterans. And, over time, LCA grew in strength, numbers and impact—and the organization went on to become one of the nation’s top charities dedicated solely to providing patient support and advocacy for people living with or at risk for lung cancer.