Lung Cancer Advocacy Heads East to Washington

Like a phoenix rising from the ashes of a smoked tobacco product, lung cancer advocacy has metamorphosed from its Western roots to re-emerge and establish its presence on Capitol Hill. The Lung Cancer Alliance (LCA)—formerly known as the Alliance for Lung Cancer Advocacy, Support and Education, or ALCASE—has shortened its name and sharpened its mission to bring the biggest cancer killer of them all out of the closet, and into the minds of the American public and its federal legislators. “We've relocated our headquarters to Washington, DC, renovated our organization with new staff and a new logo—‘No More Excuses; No More Lung Cancer’—and taken a more aggressive stance on advocacy,” said the organization's new President, Laurie Fenton, who served two decades on Capitol Hill in various legislative staff capacities in both the Senate and House, as well as Chief of Staff to Commerce Secretary Don Evans. In a telephone interview, Ms. Fenton and Sheila Ross, another 20-year veteran of the Hill, as well as a two-time lung cancer survivor and LCA's special counsel, discussed the recent organizational changes and charges. Many lung cancer patients have long been treated as second-class patients, partially because of the stigma carried with the condition regarding its perceived preventability. The newly revamped organization intends to continue ALCASE's commitment to education and support, and add a massive dose of political advocacy to raise awareness about lung cancer and put federal research funding on a more equal par with its other cancer cousins. Lung Cancer Lags Behind in Federal Research Funding Ms. Fenton noted that the total 2005 allocated federal research funding per death due to lung cancer is $1,829, as contrasted with $5,216 for colorectal cancer; $14,369 for prostate cancer; and $23,474 for breast cancer. Yet, she said, lung cancer is the leading cause of cancer death in the United States, causing 30% of all deaths due to cancer, which is greater than the combined number of Americans who will succumb to breast, prostate, colorectal, liver, and kidney cancers and melanoma this year. Lung cancer advocacy has long suffered from a low survivorship constituency due to high mortality, as well as its “self-inflicted” stigma. A powerful tobacco lobby probably hasn't helped encourage advocacy recruitment. Raise Awareness of Both General Public & Washington Legislators Ms. Fenton said she hopes to take the Lung Cancer Alliance's awareness campaign to both the general public and Washington legislators through newspaper advertising and an eight-city “Together, Facing Lung Cancer” event featuring Jimmie Holland, MD, Chair of Psychiatric Oncology at Memorial Sloan-Kettering Cancer Center and Professor of Psychiatry at Weill Medical College of Cornell University. Scheduled to run from June through November—which is Lung Cancer Awareness Month—this free educational program dedicated to helping patients and caregivers receive the necessary information and support, is sponsored by Genentech Inc. and OSI Pharmaceuticals. The tour will visit cancer centers in Tampa, San Francisco, Boston, Nashville, Denver, Baltimore, New York City, and Pittsburgh, five of which have lung SPORE (Specialized Programs of Research Excellence) grants, and will have Dr. Holland, local cancer specialists, and LCA representatives engage in a “town-hall” discussion about the importance of having patients and caregivers work with personal support teams.Figure: Eric Rosenthal, now an independent medical journalist, founded the NCI-designated Cancer Centers Public Affairs Network; has organized conferences about the media and medical/cancer communications issues, and is a member of the NCI Director's Consumer Liaison Group.The newspaper campaign was launched in early May with ads appearing in the New York Times, Wall Street Journal, and Washington Post. According to Ms. Fenton, the first ad featuring lung cancer survivor Karen Parles and created by Diane Rothschild, also a lung cancer survivor, ran once a week for three weeks in carefully selected sections of each paper. For example, the Times' ad was on the Op-Ed page; the Post's was on its federal page—“the first page readers look at to see what's happening in Washington”—and the Journal's ran in the front section. Immediately below a photo of Ms. Parles (who is not personally identified in the ad), reads the copy: “This lung cancer patient can't stop smoking. Because she never started.” The body of the copy notes that more than half of the people currently being diagnosed with lung cancer are either non-smokers or former smokers, and states, “In spite of this, the stigma of smoking is still so great that lung cancer is under-funded, under-researched, and generally ignored by Congress.” It concludes with, “It's time to treat lung cancer research with the same urgency that we bring to every other major cancer.” “Because the most lethal cancer in the country can no longer be hidden behind a smoke screen.”FigureAnd is followed by the slogan, “No More Excuses. No More Lung Cancer.” Ms. Fenton said the national awareness campaign will roll out in phases with about one dozen ads planned. Although she did not know the total cost of the newspaper strategy, she said it would be funded through the Alliance's general funds, about one third of which comes from individual donors and foundations, with the balance from pharmaceutical and biotech companies including Astra Zeneca, Genentech, Eli Lilly, and Millennium. “We have to elevate awareness about this disease to the public and policy leaders,” she said. “It's hard to ask for things from Congress because members are uneducated about lung cancer, so we're laying the groundwork.” “Our intent is basic—to communicate for the first time what lung cancer is all about—most notably that it's the biggest cancer killer.” The Alliance plans to work with organizations such as the American Legacy Foundation, which is dedicated to “building a world where young people reject tobacco and anyone can quit.” LCA also has an interest in developing strategies for early diagnosis and screening for lung cancer using CT scans, and will continue its education and support programs such as the Lung Cancer Hotline (1-800-298-2436); Phone Buddy Program; Web Site (www.lungcanceralliance.org); Clinical Trials Matching Service; and Spirit & Breath newsletter. ‘Unsinkable Molly Brown and Whirling Dervish’ Ms. Fenton referred to special counsel Sheila Ross “as an unsinkable Molly Brown and whirling dervish, who, for two years was the only person in Washington who did anything about lung cancer,” and got ALCASE's board of directors to consider the organization's name, mission, leadership, and location changes. “When I was first diagnosed with lung cancer in 1992, I received my treatment and didn't spend any time investigating the disease, because I felt guilty about it,” Ms. Ross related. Her tenure on Capitol Hill included working for various Democratic and Republican representatives and senators, as well as serving as a member of Hillary Clinton's health care task force, and as Chief of Staff to representatives from the Virgin Islands and other US territories. She likened getting respect for the territories with the challenge faced helping to spearhead the fledgling lung cancer advocacy movement. Then, forced to retire during her second bout with lung cancer in the early 2000s, she decided to learn more about the disease, including its high numbers and limited funding. “I couldn't believe public health had failed so miserably,” she said. “I had worked in Washington for 20 years and realized I didn't know a thing about lung cancer. I also realized that ALCASE had to be located in Washington, and a fortuitous meeting with Jane Reese Colbourne, past Executive Director of the National Breast Cancer Coalition, helped make this become a reality.” Ms. Colbourne, a breast cancer survivor, had lost both her parents to lung cancer, and was an organizational management consultant. Shortly following her mother's death, Ms. Colbourne met Ms. Ross, and the two began analyzing and planning what had to be done to promote lung cancer advocacy, which resulted in the recommendation to close ALCASE headquarters in Vancouver, WA. In May, the organization's founder, Margaret M. McCarthy, and two other board members were replaced by three new LCA board members. Serving as interim Executive Director, Ms. Colbourne restructured ALCASE into LCA, and recruited Ms. Fenton, who realized when she met Ms. Ross that the two had known each other in the 1990s when both were working in the Senate, and admitted she had no idea back then that Ms. Ross was a lung cancer survivor. Today, Ms. Colbourne continues as a consultant to the organization, and the three, with two additional program managers, constitute the LCA Washington office. Ms. Ross states in a pitch letter to the media that “the problem is not the science, but the politics. Lung cancer has the stigma of smoking and too few survivors to amass a grass roots lobbying army that has proven so effective for other cancers and diseases. The story of lung cancer illustrates the flip side of making public health decisions based on politics.” Time will tell if the public awareness campaign will help turn the tide.

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