The Bulletin, September 23, 2005
By Markian Hawryluk

The Invisible Victims

Lung cancer victims suffer from smoking stigma

Diagnosed last year with advanced lung cancer, Sandy Britt can't stand to hear the question she always knows is coming. Did you smoke?

"I actually feel like I have to offer up that information," she says. "I feel like I have to defend myself. I didn't deserve this cancer. I didn't ask for this cancer. It really infuriates me to have a smoker's disease when I hate smoking."

The 42-year-old Alameda, Calif., woman has never smoked. She even belonged to a nonsmoker's rights group. Yet, she bears the brunt of the public scorn for a disease perceived to be brought on by its victims. Because of its close link with smoking, lung cancer carries a stigma that garners little public sympathy and inadequate research funding.

Lung cancer kills more Americans than breast cancer, colon cancer and prostate cancer - combined. Yet few people realize the toll it's taking.

When it came time to choose a color for the lung cancer awareness band that raises money for research, advocates chose a transparent band. Lung cancer patients, they say, are the invisible constituency.

Culture of blame

"People really do have the feeling that people who get lung cancer had to be smokers and so they brought it on themselves," says Tom Labrecque, Jr., the son of the late Chase Manhattan president who died of lung cancer several years ago.

At his father's funeral, a family friend approached Labrecque to give his condolences.

"Tom, I'm really sorry for your loss," he said. "I didn't realize your father was a smoker."

He wasn't.

"It just kind of really hit home to me how people think, 'Lung cancer? Smoking.'" Labrecque says. "When people are diagnosed with AIDS, you don't hear people saying, 'Wow, I didn't know you practiced unsafe sex.' But with smokers, oh yeah, take the gloves off. It's a stigma that's been there and it's very hard to peel off."

That connection has been hammered home by years of anti-smoking public service messages that suggest if you smoke you can get lung cancer and that quitting smoking is the best way to reduce your risk. Both statements are undoubtedly true, but they only tell a portion of the story.

"The challenge has been that the very, very worthwhile fight to decrease smoking levels in this country, for all kinds of health benefits, has been so successful, people think they know the whole story of lung cancer," says Susan Mantel, executive director of Joan's Legacy, a lung cancer patient advocacy group.

"And it really stops for them at: if you really don't want to get lung cancer, don't smoke."

Caught in the crossfire

Studies indicate that between 15 and 20 percent of people diagnosed with lung cancer never smoked, and the majority of new lung cancer patients either never smoked or quit smoking years before. Joan's Legacy was founded in honor of Joan Scarangello McNeive, a New York television writer and producer, and a nonsmoker, who died of lung cancer at age 47. The question of whether you were a smoker or not is so pervasive that many lung cancer patients refuse to answer, regardless of whether they were smokers or not, Mantel says.

"They are just stunned. They expected sympathy to the fact that they have a life-threatening disease," she says. "Some of them stop admitting they have lung cancer."

Dr. Archie Bleyer, a Bend oncologist, says the campaign against smoking is a double-edged sword.

"In our society, it's such an onerous burden to admit that you are a smoker," he says. "It's a good thing that we make it that discomforting (to smoke), but for those who have and can't stop, it's a real burden. Psychologically, we create another set of problems."

Bleyer says patients who continue to smoke often feel that they are a failure and carry a tremendous amount of guilt.

"They sense that they failed society, failed their families, failed their spouses, failed their parents even," he says. "That permeates them consciously or unconsciously."

Dr. Ed Boyle, director of thoracic surgery at Bend Memorial Clinic, has seen the impact of public perception from both sides. He has treated lung cancer patients for most of his professional career, but also lost his mother to lung cancer.

"They take a disproportionately high amount of blame in the public eye, for what's happened to them, and it's not right," he says. "It's disproportionately harsh on somebody who's going to die."

Lack of sympathy

Lori Monroe, 46, a cardiac care nurse from Bowling Green, Ky., had quit smoking 17 years before being diagnosed with advanced lung cancer in 2001. She says the public attitude about lung cancer adds another layer of stress on patients.

"Instead of getting support, you've got the dual burden or emotional impact of having this life-threatening disease, that you've got to fight for your life, and everybody feels that you deserved it," she says. "It was automatically, 'This is because you smoked.'"

Monroe says the question of smoking was always either the first or second out of people's mouths when they heard of her diagnosis.

"It's very much associated with the guilt. Well, you caused your own disease. What did you expect? This is due to your own stupidity," she says. "I got so that I would just ask them back, 'Are you suggesting that I somehow deserved this?'"

Monroe says she believes most people ask because they want to somehow assure themselves that they are immune to such a horrifying disease.

"It is a hard battle," she says. "I think that a lot of lung cancer patient don't even expect that they deserve good treatment."

As a cardiac care nurse, Monroe cares for people whose behavior and lifestyle have contributed to their heart problems. But nobody blames a patient for his heart disease because he ate too much fried food or didn't exercise.

"You just don't do that to people," she says, "except with lung cancer."

The common view of lung cancer is that it affects older men who smoke, yet more than three quarters of the nonsmokers who get lung cancer are women between the ages 30 and 50.

"Women in general are not aware of their risk," says Regina Vidaver, executive director of Women Against Lung Cancer. "We're now to the point where almost twice as many women are dying from lung cancer than from breast cancer. We need women to be aware that this is a women's disease."

The other problem for nonsmokers, particularly women, is that they don't fit the profile for lung cancer and so their doctors often miss the symptoms. Britt has a history of lung cancer in her family. Her father smoked and died of lung cancer. Her brother quit smoking early but also died from the disease. Yet her family history wasn't considered by her physicians. In 2001, she had an abnormal chest X-ray, but the doctors discounted lung cancer because she didn't smoke. Her lung cancer went another three years before an allergist got suspicious about her cough.

"Being a young woman, being a nonsmoker, that works against you," she says. "Then you get the disease and you find that it's a totally stigmatized, unsympathetic, hated cancer. It makes having a fatal disease like this 10 times worse."

Funding shortfall

One of the reflections of how the public views lung cancer is the amount of funding that goes to lung cancer research, Boyle says.
"It's disproportionately low compared to the amount of suffering and loss of life that's related to it," he says.

According to data from the Centers for Disease Control, lung cancer research receives substantially less funding per death than breast, colon or prostate cancer. Boyle says that is a direct result of the stigma associated with lung cancer and smoking. But there are other factors in play as well.

"Lung cancer, for both men and women, has made very little progress compared to those three," Bleyer says. "So you put your money where you're making progress."

Advocates say lung cancer research is caught in a catch-22. Without adequate funding there is less chance of making progress, but without making progress, it is tough to get more funding.

"Success begets success," Bleyer says. "If you have a return on investment, you want to invest more."

For the most part, public health officials also have chosen to invest their limited resources in prevention rather than research.

"For many of the other cancers we deal with, we don't know what causes them or if we do know, we can't do anything about it," says Dr. Michael Perry, a lung cancer expert from the University of Missouri Ellis Fischel Cancer Center in Columbia, Mo. "This is a cancer that we have a pretty good idea of what causes it. We just aren't doing a very good job about getting people to quit smoking."

The lung cancer community counters that the overwhelming emphasis on smoking cessation to address lung cancer mortality rates provides little benefit to never-smokers and former smokers.

"A lot of people with the federal government do believe there is a larger payoff in investing in prevention than there is in the research," Vidaver says. "Our view is that that is very short-sighted. Absolutely there need to be funds for prevention and cessation, but that can't be it."

Resource distribution

Sue Fratt, chief executive officer of the American Lung Association of Oregon, says it's an issue of where resources can have the most benefit.

"The reality is that the treatment for lung cancer is expensive, and often times, if the person does not have the financial means and insurance to cover their own expenses, it's passed on to the general cost of health care," she says. "Whereas if we work to prevent people from starting to smoke in the first place, it's a long-term cost benefit. It would run into the millions and millions of dollars for potential cancers saved."

The American Medical Association has been a vocal proponent of smoking cessation efforts, but says it shouldn't come at the expense of research.

"It should not have to an either-or choice," says Dr. Ron Davis, a preventive medicine physician and an AMA trustee. "Lung cancer is still the number one cause of cancer death in both men and women in the United States. Research on the early detection and treatment of lung cancer needs to continue, but we need to make sure we are allocating substantial funding toward helping smokers quit and preventing youth from taking smoking or other forms of tobacco use."

Jenny Breslow, a spokeswoman with the Oregon chapter of the American Cancer Society, says the group doesn't set parameters for how much of its research funding should be allocated for lung cancer as opposed to other cancers. The group solicits grants proposals and relies on independent physicians and researchers to advise them which grants to fund.

Lung cancer advocacy groups contend that the funding disparity has resulted in little progress in combating the disease. There have been no significant reductions in lung cancer mortality rates in 30 years. Only about 15 percent of lung cancer patients survive for more than five years post-diagnosis. Survivorship for breast, colon and prostate cancers are all above 90 percent.

That also means that advocates for other forms of cancer can rely on countless numbers of survivors to tell their story and gain sympathy for their cause. Lung cancer has few such heroes. With few cases caught early, most patients have limited time and energy to advocate as they struggle with the disease. Family and friends sometimes pick up the cause, but often are reluctant to have their loved one associated with the condition.

Mantel says she's noticed families of nonsmokers are much more likely to get involved in the fight.

"They felt absolutely unambivalent," she says. "There was no guilt, there was no 'I should have done more," or for the patient, 'I should have quit.' They're just mad."

Many lung cancer advocates say the movement for greater recognition and fairer treatment is still in its infancy. The Lung Cancer Alliance recently reorganized and moved from Washington state to Washington, D.C., to help educate lawmakers about lung cancer.

Lung cancer research should be "at least funded to the levels that prostate and breast cancer are funded from a federal standpoint," Alliance director Laurie Fenton says. "Let's just start there. We are the leading killer taking the lives of twice the number of women as breast and cervical cancer, three times the number of men as prostate. These are statistics that have existed for decades. And yet, there's never been the push to do more."

Labrecque says lung cancer advocacy groups have yet to come together in any cohesive way and that many have been territorial about their resources and contacts.

"All of us do it for different reasons and at the end of the day, it's very emotional," he says. "When you try to get groups to work together, it gets very difficult and very contentious very fast. At times, the lung cancer community has been its own worst enemy."

He says the movement is fractured along smoking and non-smoking, prevention and research, and screening or treatment lines.

Celebrity cause

There's hope among advocates that the recent media attention to the death of Peter Jennings, a former smoker, and the diagnosis of Dana Reeve, a never-smoker, will be a milestone in their efforts.

"I would say Dana Reeves coming out with her diagnosis did more for lung cancer awareness than any thing that any of us working in the movement could have ever done," Fenton says.

Reeves is helping to drive home the message that lung cancer can happen to anybody, not just smokers.

"That's when people start paying attention," Fenton says. "It's really viewed as a self-inflicted disease and that diminishes the public's capability to be sympathetic and it diminishes people's sense of this could happen to me."

Many of the groups are involved in fundraising and support lung cancer research directly. While the money is crucial to their efforts, many say it's public opinion that really makes the difference.

"Everybody could make a donation, but everybody could also reach out to somebody with lung cancer with compassion," Mantel says. "And that would be a really important step in shifting the whole dynamic."

For lung cancer patients like Britt and Monroe, the clock continues to tick. Monroe has undergone four surgeries to date, despite being told by some doctors her condition was inoperable. Britt has had good results with the drug Iressa, reaching a point where her cancer is no longer growing. Drugs such as Iressa and Tarceva are showing a particular benefit for nonsmokers and women, but still do not represent a cure.

"I'm beating the odds. Statistically, I should be dead," Britt says. "All of us on Iressa and Tarceva, we live from scan to scan. Every time I have to have one, it's am I going to live or am I going to die. I'm praying that it will hold it back for long enough for them to figure out the next treatment."