January 20, 2003
Did You Smoke?
When I was diagnosed with lung cancer in 1998, I learned some sobering facts: that lung cancer was the #1 cancer killer of both men and women; that lung cancer kills more people each year than breast, prostate and colon cancer combined; and that more than 85% of people diagnosed with lung cancer will die from their disease.
At the time, I could not fathom how these devastating circumstances were possible - why were there no effective treatments for the deadliest cancer killer? Where was the public outcry about the enormous toll in human lives? Where was the money for research? Where were the lung cancer advocates?
It didn't take long for me to learn the answer: lung cancer is seen by the public as a self-inflicted disease. A constant reminder of this is the inevitable first question people ask when they hear I have lung cancer: "Did you smoke?" I often wonder why people with coronary artery disease aren't confronted with the same question. Or why people with colon cancer aren't interrogated about their diets. It used to anger me when someone asked whether I smoked. But now I use the question as an opportunity to combat the perception that people with lung cancer are smokers who deserve what they get. Here are some things to think about:
Lung cancer is not just for smokers - Between 10-15% of the 170,000 people who get lung cancer each year have never smoked. That's over 20,000 people - more than the number of people diagnosed each year with liver cancer, cervical cancer, brain cancer, or multiple myeloma. There is an increasing incidence of lung cancer in young, nonsmoking women and no one knows why.
90% of people who smoke begin smoking in their teenage years - a deadly addiction that persists into adulthood. Tobacco companies continue to play an unconscionable role in perpetuating smoking among young people.
Approximately 50% of people diagnosed with lung cancer each year are not smokers - they are former smokers and people who have never smoked.
The ramifications of the smoking stigma are profound. The lack of public support for people with lung cancer has resulted in fewer services for patients and fewer dollars for research. Lung cancer is vastly underfunded relative to other common cancers. In 2000, the National Cancer Institute estimated that it spent only $1,200 per lung cancer death, compared to $11,400 for breast cancer and $8,000 for prostate cancer. This huge disparity in funding levels has translated into less effective treatments, unacceptably high mortality rates and a paucity of support services for people with lung cancer. Awareness and fundraising events that are routine for other common cancers - hospital galas, walk-a-thons, wine tastings - are rare for lung cancer. Celebrities who have lung cancer or who have family members with lung cancer are unwilling to associate themselves with a stigmatized disease. Politicians who accept money from tobacco interests have shown no willingness to address lung cancer as the enormous public health problem that it is. Most notable is the striking lack of coverage in the media for the #1 cancer killer.
On a personal level this lack of public support and empathy is demoralizing to those of us fighting a deadly disease. Many lung cancer patients do feel guilty about causing their lung cancer through smoking. This guilt, combined with the public prejudice against people with a self-inflicted disease, serves to stifle those who could best advocate for increased support for lung cancer.The good news is that we can all work toward eliminating the stigma of this disease by putting a face on lung cancer. People with lung cancer should not be afraid to speak up and identify themselves as lung cancer survivors. The public needs to know that people with lung cancer are mothers, fathers, sisters, brothers, loved ones, and friends, young and old. They are not smokers. A smoker is an abstract concept, not a person with a life-threatening disease who is worthy of our caring and support. People with lung cancer have names, faces, and families, and deserve the same respect afforded people with other cancers. Humanizing lung cancer is the important first step toward ensuring that people with lung cancer will no longer be invisible.
Karen Parles, MLS
Executive Director, The Lung Cancer Online Foundation