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Lung Cancer: The Stigmatized Disease

Guest: Linda Wenger; Host: Christopher Springmann
TRT: 9:45

Christopher Springmann:    Lung cancer takes more lives than any other cancer.  This year it will kill an estimated 160,000 plus Americans, more than breast, colon and prostates cancers combined.  Yet while lung cancer remains largely a death sentence—just 16 percent of those diagnosed are alive five years later—the federal government funds far less research on the disease than for other common cancers.  The discrepancy is darkest when death rates are taken into account, an issue that deeply concerns our next guest.  She is Linda Wenger, Executive Director of the Uniting Against Lung Cancer Research Foundation.  Thanks so much for joining us today, Linda, on Body Language.

Linda Wenger:    Thank you for having me.

CS:    I’ve looked at the numbers and the statistics and, frankly, they don’t lie.  The survival rates, the funding rates for lung cancer are appallingly low, especially as compared to breast cancer.

LW:    Yes.  It’s a pretty grim story.  I’ll give you an example.  Breast cancer received $26,000 per cancer death by the federal government last year, where lung cancer received about $1400 per cancer death.  That’s a huge discrepancy, especially considering how many more cases there are of lung cancer than breast cancer.

CS:    Well, you know, it’s interesting.  There seems to be a perception issue surrounding lung cancer versus breast cancer.  Let me read a quote from Samantha King who wrote a book called “Pink Ribbons Incorporated,” in which she examined why breast cancer more than any other illness has become an ubiquitous marketing movement.  And the answer, she said, is that the most significant risk factors for breast cancer, such as genetics and age, can’t be altered by women, which is why it’s regarded as a “blameless disease”.  It attacks women.  You know, your mother, your sister, your aunt, your grandmother, your daughter…

LW:    Yes, well…

CS:    …who account for the bulk of America’s purchasing power, too.  And, frankly, it attacks, she said, the very symbol of femininity, the breast.  Lung cancer is quite different in terms of the public’s perception, isn’t it?

LW:    It is, absolutely.

CS:    In fact, it’s actually a disease that is stigmatized.

LW:    Correct.

CS:    Why is that?

LW:    Well, because of its strong association with smoking.

CS:    Oh.

LW:    I think the anti-smoking campaigns have been maybe a little bit too successful.  Everybody’s aware that smoking is a terrible thing.  And, of course, it’s also an addiction and a difficult one to quit.  So you have people who are being blamed for their disease, and all of us in the advocacy community believe that nobody deserves to have cancer, and that’s something that should be, you know, just common sense.  I just want to tell you, though, twice as many women will die from lung cancer this year as from breast cancer.  It is a women’s issue.  And we don’t really even know why women are so susceptible to lung cancer, and a growing number of women who never smoked at all or who quit smoking decades ago are getting lung cancer is a real problem that we’re trying to solve with research.

CS:    Well, one famous example is Dana Reeve, the singer/actress and widow of Christopher Reeve, the actor, who is best known for his role in Superman.  Now, Dana was a non-smoker who was just beginning to emerge from the grief of losing her husband when she was diagnosed with Stage IV lung cancer at age 44.  One of the problems as I understand it with lung cancer is that it is frequently detected only when it becomes symptomatic.

LW:    Correct.  You have a woman like Dana and many others who are in their 40s who are healthy.  They exercise.  They eat well.

CS:    They do everything right.

LW:    That’s right.  And they go to their doctor with breathing problems or pains in their chest and they’re going to be told they have asthma or COPD.  They’re not even going to be seen as candidates for testing for lung cancer.

CS:    Well, speaking of COPD, which also includes chronic bronchitis and emphysema, my mother, who was a smoker, was diagnosed with emphysema.  And while they were there, they did some imaging.  And lo and behold, they discovered that she had another co-morbidity, lung cancer.  That is not an unusual way that lung cancer is picked up.  In fact, frequently it’s picked up by accident.

LW:    Absolutely.  I hear that story a lot.  One of our board members is a two-time lung cancer survivor, and it was found the first time because she pulled a muscle in Pilates and had–you know, they took a closer look.  But early detection is a real issue for lung cancer.  It’s a problem that’s definitely been solved with breast cancer and others.  But with lung cancer, a study about a year ago found that people who are very, very heavy smokers—if they had a CT scan, it could reduce the morbidity by 20 percent.  But, again, a healthy young woman who has never smoked—they’re not going to give her a CT scan because they’re not going to suspect it.

CS:    Well, one important question to ask a doctor, especially with respiratory conditions, is “Doctor, what else could it be?  Could it be lung cancer?”  And if they say, “No.  You’re too young.  You don’t fit the demographic,” I would insist on a test.  It’s pretty inexpensive and, frankly, quite effective.

LW:    Well, there’s a lot of controversy about who should have CT scans.  That’s something that even within the lung cancer community is being heavily discussed.  But I think as more and more of our physicians are become aware that lung cancer is growing within the never-smoking population, I think that will hopefully change.

CS:    Our guest is Linda Wenger, Executive Director of the Uniting Against Lung Cancer Research Foundation.  Linda, what is your URL for our listeners who would like to get more information about lung cancer and perhaps even donate?

LW:    Thank you.  That’s www.unitingagainstlungcancer.org.

CS:    How do we get beyond the world of the stigma about lung cancer, which I believe is tied to the reduced funding we see for lung cancer versus, let’s say, prostate or breast cancer?

LW:    There’s no question.  There’s no question that the funding is an issue because of the stigma.  I think the biggest change in attitude will occur as people survive a little bit longer with lung cancer, and that’s one of the things that we can actually say is a good thing that’s happening right now.  Research in the last five years has uncovered mutations that cause lung cancer.  Then the pharmaceutical companies have been able to develop therapies that attack those specific mutations.  So we have people who are living a little bit longer.  That could make the big difference.  We’ll have champions who can actually stand up for lung cancer the way we have breast cancer survivors, AIDS survivors, people who can champion the cause.

CS:    Well, it’s interesting that you should mention AIDS.  Stacy Palmer, who’s the editor of The Chronicle of Philanthropy, said that “AIDS lost its stigma in large part because Hollywood tastemakers took up the cause,” and that’s a quote.  Similarly, when Betty Ford came forward about her breast cancer in 1974, it moved the disease out of the shadow and literally out of the closet.  So changing perception about lung cancer is imminently possible and, frankly, a worthy goal that will help drive additional funding, especially from the federal government and, of course, folks like you and me.

LW:    That’s right.  Well, it is very difficult to get a celebrity or the family of a deceased celebrity to admit that the person died of lung cancer.  The stigma is just too great, and we’re constantly being told of people who are saying that, “Okay.  This person had breast cancer” when they really had lung cancer.  It’s seen as less stigmatized.  It’s not seen as a self-induced disease.

CS:    Well, as we mentioned earlier, much of the—oh, gosh—growth.  That’s probably the wrong word of lung cancer.  The increase in lung cancer rates is occurring among never-smoking women and also people who, you know, a decade or a generation ago saw the light and stopped smoking and have extended their life because of that decision.  However, they still acquired lung cancer.  We should be cheering those people on and not demonizing or stigmatizing them.

LW:    Absolutely.  I’m very hopeful that attitudes will change.  Again, I think that survivors are going to make the difference.  When you have that person around and still in your life, you can be grateful that they’ve beaten a disease.  I think that changes your feeling about it and hopefully more people will come out and be supportive, will join the events that we have that other advocacy organizations have and put a face to lung cancer.

CS:    A human face to lung cancer.  How can people learn more about your organization and those events, Linda?  What is your URL, please?

LW:    It’s www.unitingagainstlungcancer.org

CS:    Our guest has been Linda Wenger, Executive Director of the Uniting Against Lung Cancer Research Foundation, which is determined to change the public perception of lung cancer in America and give people who have that disease the sense of dignity and respect, frankly, they deserve.  I’m Christopher Springmann and you are listening to Body Language on Radio MD.