Profiles in Advocacy

Lung Cancer Alliance advocates are passionate about raising awareness of lung cancer.

Lung Cancer Alliance (LCA) is dedicated to “reversing decades of stigma and neglect by empowering those with or at risk for the disease, elevating awareness, and changing health policy.” To that end the Washington, DC–based organization works to engage advocates across the country to raise awareness of the disease and its related issues and to help create positive change. Kay Cofrancesco, director of advocacy relations at LCA, says that the organization works diligently to educate prospective advocates about the value of advocacy work: “Lung Cancer Alliance has information on our website and at all of our events to engage both men and women in advocacy. In addition, we host an annual Capitol Forum here in DC. We invite advocates and volunteers from across the country to come to Washington, DC, where we teach them how to talk to their elected officials and the media. We teach them about becoming effective advocates and how to use their voices for the entire lung cancer community.”

The following stories represent just a few of the many advocates working around the country on behalf of LCA and the lung cancer community.

Diane Legg

Diagnosed with non–small cell lung cancer in 2004 at the age of 42, Diane Legg was shocked to learn that former and never-smokers were susceptible to the disease. An active, otherwise healthy mother of three, Diane had never considered herself at risk of lung cancer. “I thought only longtime heavy smokers got the disease,” she says. “I had no idea that never-smokers or former smokers were getting lung cancer. I was completely ignorant of how prevalent this disease was and how dismal the survival rates were.”

Having learned much more about the disease and its impact during her own treatment and recovery, Diane has become a passionate advocate, determined to educate others and raise awareness of the disease. Here, Diane describes the role that advocacy plays in her own story and why she encourages other survivors to become active advocates:

I believe it can be very powerful to share your story. Lung cancer can be a very lonely disease due to the stigma it carries. After being diagnosed with lung cancer and learning the statistics, I was stunned by the lack of research that had been done, the lack of progress relative to screening and survival rates, and the lack of understanding by the general public, medical community, and government about the disease itself. Due to the lack of survivors, lung cancer also has few to advocate for it. We need people to share their stories to educate others about the disease and start getting funding to reverse the statistics and the stigma.

Those who have been touched by lung cancer quickly realize that not all cancers receive equal funding and attention. Those cancers with the largest number of grassroots advocates have received ever-increasing amounts of both public and private funding for early detection and research, accounting for steady increases in survival rates.

Sadly, few women know that lung cancer is more deadly than breast cancer. Almost twice as many women die of lung cancer than breast cancer each year. Nor do many women know that lung cancer is increasing in non-smoking women at alarming rates. An estimated 30,000 people who never smoked or were never exposed to significant smoke died of lung cancer in 2007—and nearly two-thirds of them were women. The biggest increase has been among non-smoking women under age 50.

Six years ago, I started working with Lung Cancer Alliance, the only national nonprofit organization dedicated solely to patient support and advocacy for people living with lung cancer and those at risk of the disease. Currently, I am co-chair of the New England Chapter of LCA, where we are working with other advocates to bring awareness and legislative changes on both the state and federal levels. I am committed to speaking out about the devastation that lung cancer is having on our families today and to raising awareness in order to change the face of this disease.

In 2006 I started Shine a Light on Lung Cancer Vigil in Boston to honor and remember those who have been touched by the disease and to raise awareness. This year there will be more than 60 vigils in more than 30 states and in two countries to shine a light on lung cancer and bring it out of the shadows.

Because of the stigma and the blame associated with lung cancer, the investment in research and early detection has been delayed and underfunded relative to its public health impact. This underfunding is greatly responsible for the dismal 15.5 percent five-year survival rate. Lung cancer, the most underfunded of all major cancers, has few survivors to advocate for changes in public health policies that have led to decades of neglect. This is why it is so important to tell our stories—we need to change this and we need to change it now!

Karen Arscott, DO

Upon her diagnosis with lung cancer, physician Karen Arscott (see profile on page 50) couldn’t believe how little progress was being made in lung cancer funding and awareness. “As a physician I was appalled at the fact that the mortality rate for lung cancer had not changed in at least 30 years,” Karen says. “Further, I was shocked by how little physicians knew about treatment options, and, for that matter, how few options there are.” With a medical background and experience with communicating healthcare issues in the public sphere, Karen felt compelled to step into advocacy.

Since she has become active with Lung Cancer Alliance, Karen has been involved in fundraising efforts, has traveled to Capitol Hill to advocate for funding and legislation, and has helped organize the annual Shine a Light on Lung Cancer Vigil in her area. Having seen firsthand the impact that these and other advocacy efforts can have, Karen urges others to do what they can: “Jump in—ask others what needs to be done and how to do it, and have fun!”

Jenny White

Jenny White was diagnosed with lung cancer in October 2010 at age 49. A never-smoker with no major risk factors for the disease, Jenny underwent surgery to have the Stage 1A tumor removed and has since been cancer-free. Because she was diagnosed so early and had such effective treatment, Jenny struggled initially to consider herself a “survivor.” “I did not feel like I had earned the right,” she says. “As someone said, I had the ‘Cinderella of lung cancer stories.’”

In time Jenny has come to realize that her early diagnosis and good prognosis mean that she can offer her voice on behalf of the many whose stories did not have such a fairy-tale ending. “I finally came to terms with the title when I realized how amazingly blessed I was to have had my lung cancer diagnosed so early,” she says. “After realizing the magnitude of my early diagnosis, I decided to be a voice for those diagnosed too late.”

Now Jenny is working with Lung Cancer Alliance to help raise awareness and funding for the disease. Having hosted Nashville’s first Shine a Light on Lung Cancer Vigil this past fall (an annual LCA event), Jenny continues to advocate through her role as chairman of both the first-ever State Lung Cancer Committee for Tennessee and the Lung Cancer Committee for Middle Tennessee through the Tennessee Cancer Coalition and the Tennessee Comprehensive Cancer Control Plan.

In all of her advocacy efforts, Jenny is motivated by a deep-seated desire to make a difference for those affected by lung cancer, and she urges others to look within for the fire to create change. “For me,” she says, “the most important component of advocacy work is finding your passion. Changing minds and moving others to action will be challenging. Staying true to your passion will keep you focused and motivated.”