The outcast disease
Lung cancer fight is out of sightBy VIRGINIA ANDERSON
The Atlanta Journal-ConstitutionNovember 30, 2003
Lung Cancer Awareness Month ends today; were you aware?
Lung cancer kills tens of thousands more people than breast cancer does. But during the past month of "awareness," there have been no pink ribbon pins for lung cancer, no long marches for a cure, no postage stamps or T-shirts or bras or candy at checkout counters. Breast Cancer Awareness Month, in October, had all that and more.
Advocates of lung cancer research know their disease lacks the cachet of breast cancer. Their chosen symbol is a clear plastic ribbon. Invisible. They know that lung cancer patients often are blamed for having the disease; breast cancer patients never are.
"There's absolutely no question in my mind that we all have sympathy for breast cancer patients," said Dr. Fadlo Khuri, associate director for clinical
and translational research at Emory's Winship Cancer Institute. "They're young, they're well-spoken. And there's no question it's a terrible disease."
But, Khuri said, "let's face facts. Lung cancer is a worse disease."
Cancer researchers, Khuri included, will be quick to add that all cancers are awful and that research for all is underfunded.
"Cancer gets two pennies out of every thousand [pennies spent on research],"said Jonathan Simons, Winship's director. "And it affects one in two men, and one in three women. If terrorists shot at every other house, do you think we would stand for that?"
And yet, lung cancer research gets fewer dollars from state and federal governments, even though lung cancer kills more people. And even wider is the gap between grants from private foundations for lung cancer compared with breast cancer; the latter disease afflicts many more women, but it kills far fewer.
At the root of the funding breach may be a lack of compassion for lung cancer sufferers, advocates and researchers say. They describe the disease as the outcast cancer.
"Oh, I know the big reason," says former Gov. Roy Barnes, who established the Georgia Cancer Coalition. "It's blame. They think people brought it on themselves by smoking, and I agree to some extent. But that doesn't mean we just ignore these people."
Nearly nine in 10 lung cancers are linked in some way to smoking. Causes of many other types of cancer are not nearly so clear, even though smoking is implicated in many.
While most lung cancer advocates stop short of criticizing the amount of money and public support that go to breast cancer, they cannot help but compare and see the differences.
The numbers for women in 2003:
Breast cancer diagnoses: 211,000. Lung cancer diagnoses: 80,000. Breast cancer deaths: 40,000. Lung cancer deaths: 68,000. Among men, 91,800 new cases of lung cancer will be diagnosed, and 84,400 will die.It's not just the high numbers that worry advocates and doctors. The death rate -- about 85 percent -- is higher than for any other cancer.
But the stigma of lung cancer stands in the way of funding for it.
For example, breast cancer research has received $1.66 billion since 1992 from the Defense Department, whose U.S. Army Medical Research and Materiel Command awards grants to universities, hospitals and other research agencies. Lung cancer, meanwhile, has received $33 million in Defense grants.
Breast cancer research and support have also taken in hundreds of millions of dollars from foundations such as the highly successful Susan G. Komen Foundation and the Avon Foundation, which has given $250 million to breast cancer research and outreach during the past 11 years. Lung cancer is still trying to get its first cosmetics sponsor. While breast cancer walks abound during October, a leading lung cancer group could cite only one race for lung cancer this year, in Chicago.
The numbers should be hard for the government and philanthropies to ignore, advocates said. That they are is deeply troubling to many.
"The disease itself is invisible, and the people who have it are basically written off," said Jan Healy, senior program manager for the Alliance for Lung Cancer Advocacy, Support and Education, a Portland, Ore., advocacy group that started in 1995.
"I have begged the breast cancer people to help out, and they say, 'We don't do lung, we do breast,' " said Sheila Ross, a representative of the lung cancer alliance in Washington. "And I say, 'Who does the woman?' "
For a variety of reasons, lung cancer advocates find themselves at a competitive disadvantage with advocates of other cancers. The disadvantages include:
Few survivors: One reason for the shortage of money is the shortage of survivors to advocate for greater funding, lung cancer advocates said.
"You can't organize these people," said Ross. "They're all dead."
Not only do 85 percent of lung cancer patients die, but they die relatively quickly, often within a year of diagnosis.
Sexuality: Breast and prostate cancer push emotional buttons because they are associated with intimacy and sexuality. Breast cancer does not kill as many women as lung cancer does, but it is the most common cancer among women, and it disfigures thousands. Fear of losing a symbol of her sexuality and vitality is a compelling reason for a woman to support breast cancer research, advocates for lung and breast cancer said.
In fact, breast cancer is the one that women fear most, according to research by the Avon Foundation.
"When we question women about their health concerns, it has always been breast cancer and other women's cancer on their minds," said foundation president Kathleen Walas.
Walas said the company has no plans to fund lung cancer research, in part because Avon's studies do not show lung cancer to be of great concern to its customers.
Tobacco companies: Many researchers and advocates have a group of their own to blame for the funding gaps and the cultural indifference.
"The problem with lung cancer is the tobacco companies' absolute ruthlessness in blaming the victim," Khuri said. "On the one hand, they say it's cool to smoke, be the Marlboro Man. They're marketing their fatal product to the Third World, and then they turn around and say it's the victim's fault when they get lung cancer."
Nicotine is one of the most addictive substances known to science, the researchers said. Because most people do not understand the physiology and chemistry of addiction, they find it easy to criticize addicts as weak-willed souls who make bad choices.
Science lacking
All these disadvantages tend to result in a sparse medical landscape for lung cancer. Researchers know, for example, that most smokers do not get lung cancer, but they don't know why. They also do not know why many smokers who quit years ago develop lung cancer later on.
"We know that 87 percent of lung cancer can be linked to smoking, but we don't know what are the genetics of this," said Dr. Jill Siegfried, a leading lung cancer researcher at the University of Pittsburgh.
Also, there is no widely accepted screening tool for lung cancer, as there is for other common cancers.
The answers will not come without further research, which means years more work and hundreds of millions of dollars.
The advocates and researchers worry that current budget crises in federal and state governments do not bode well for the fight against lung disease.
'A hard sell'
Breast cancer activists remember when doors were slammed in their faces, and when sponsors told them they would give them money so long as the word "breast" wasn't used in promotional materials.
"It was very, very difficult," said Nancy Brinker, founder of the Susan G. Komen Breast Cancer Foundation. "No one wanted to talk about it. No one wanted to say 'breast cancer.' "
Brinker, whose sister Susan Komen died of breast cancer, said it took about eight years for people, particularly those with money, to hear her pleas.
"I think it was about 1989, when Vice President [Dan] Quayle's wife got behind us," Brinker said. Marilyn Quayle's mother died from breast cancer. "One thing you have to do is make it personal. You have to develop a reason for people to care."
Breast cancer advocates are understandably reluctant to share the results of their hard work with other organizations, especially when breast cancer still afflicts more than 200,000 people a year.
"I can see where they [lung cancer groups] would be envious," said Elizabeth Woolfe, director of information services at the National Alliance for Breast Cancer Organizations. "They have a hard sell. To some extent, they have the cards they were dealt with, and they have to handle it."
Brinker said the answer lies in more funding for all cancer research, not in taking money from one group to give to another.
"They should never look at it that way," she said. "The pie has to get larger, not the pieces get smaller."
In a climate of shrinking health care budgets and competition for research dollars, the lung cancer advocates are encouraged by a few steps forward. The lung cancer alliance, which operates on a $1 million budget, held a roundtable in September in Indianapolis; 10 advocacy groups attended. In addition, Ross organized the group's first congressional hearing two weeks ago to bring attention to the fact that more women die of lung cancer than breast cancer and to underscore the funding disparities.
The researchers, doctors and advocates hope to get across what they believe is their most important point -- to stop blaming lung cancer patients.
"They're human beings, too," Khuri said. "When I see a patient, I see a patient. When I see someone diagnosed with this terrible disease, all that blame just melts away."
http://www.ajc.com/opinion/content/opinion/1103/30cancer.html
Copyright 2003 The Atlanta Journal-Constitution

