ALCASE: The Alliance for Lung Cancer Advocacy‚ Support‚ and Education

By Janet Healy
Advocacy Program Manager

The dictionary defines advocacy as “pleading for or giving voice to a cause‚ often with the recommendation for public action.” Though it is often thought of as political activity‚ advocacy usually begins with one person. Although lung cancer remains the leading cancer killer of American women and men—claiming about 155‚000 lives this year alone—advocacy on behalf of people with the disease is still in its infancy.

The Alliance for Lung Cancer Advocacy‚ Support‚ and Education (ALCASE)‚ founded in 1995‚ is currently the only organization in the United States dedicated to supporting and advocating for people with or at risk for lung cancer. The organization was formed by a lung cancer patient‚ Mort Liebling‚ who was shocked to find no support groups or rehabilitation programs after his lung surgery in the mid–1980s. After Liebling’s death of unrelated causes‚ Peggy McCarthy‚ a medical educator and patient advocate‚ continued his work‚ founding ALCASE and serving as the first volunteer executive director.

ALCASE volunteers respond to thousands of inquiries a year‚ providing information and support. In addition‚ ALCASE works to increase federal funding for lung cancer research‚ sponsors “Runs for the Lungs” to increase awareness of the disease‚ and hosts a website that offers printable educational materials.

As one lung cancer survivor and an ALCASE Phone Buddy says‚ “Some of us are fighting the beast directly. Others are fighting for patients—trying to place lung cancer on the public agenda‚ or to find cures‚ or somehow mitigate the suffering caused by the disease. Strange thing about lung cancer—as bad as it is‚ it seems to attract a lot of good people.”

ALCASE participated in developing the National Cancer Institute’s Lung Cancer Progress Review Group (PRG) report. The Lung Cancer PRG report acknowledges that most people diagnosed with lung cancer are already in late stages of the disease and that current treatment options have not significantly changed the dismal survival rates. The introduction states‚ “We have allowed a ‘blame the victim’ mentality to permeate our dealings with those who contract the illness through their smoking behaviors‚ denying them‚ in the process‚ much of the social support we routinely provide for patients with other cancer diagnoses. This has hindered the development of effective‚ broadly based advocacy efforts.”

The “blame” attitude has also affected how the media covers lung cancer. A media survey from August 1999 through July 2000 found lung cancer received only 17% of the total coverage given other common cancers and was most often linked to smoking and tobacco. Even if all smoking stopped tomorrow‚ lung cancer would be with us for decades. ALCASE is advocating for development of chemopreventive agents that will protect people at risk from ever developing the disease. Our nation must not write off the tens of millions of former or current smokers who already have or may develop lung cancer. And we cannot ignore the 25‚000 people who have never smoked who will get lung cancer this year. The bottom line—no one deserves lung cancer. ALCASE volunteers serve on advisory panels for the National Cancer Institute and the National Dialogue on Cancer. But we must bring lung cancer issues before Congress as well. Despite the seemingly overwhelming obstacles‚ survivors and family members are making themselves seen and heard. They’re talking to the media‚ organizing teams for runs and walks‚ holding benefits and state rallies‚ even forming charitable foundations to raise research funding.

We believe all of these advocacy efforts are the basis for more widespread progress. As the noted anthropologist Margaret Mead said‚ “Never doubt that a small group of thoughtful‚ committed citizens can change the world; indeed‚ it’s the only thing that ever has.”

For more information‚ visit www.alcase.org. The toll–free hotline is 800–298–2436.