The neglected cancer

Lung cancer takes more lives than any other cancer. This year it will kill an estimated 160,340 Americans, more than breast, colon, and prostate cancers combined.

Yet while lung cancer remains largely a death sentence - just 15.9 percent of those diagnosed are alive five years later - the federal government funds far less research on the disease than on other common cancers.

The discrepancy is starkest when death rates are taken into account. In 2011, the two federal agencies providing most of the research money funded breast cancer research at a rate of $21,641 per death while spending $1,489 per lung cancer death.

It has been 41 years since President Richard M. Nixon signed the National Cancer Act, effectively declaring war on cancer. But there will be no victory without winning the battle against lung cancer, which causes more than one in four U.S. cancer deaths. Advocates say efforts to improve lung cancer patients' chances have been stalled by unexamined biases among health officials and the public as well as by scant research funds. They also cite the paradoxical invisibility of a disease that claims so many lives but has few champions of the sort who have taken breast cancer to national prominence.

The stigma of smoking is largely to blame. Anti-tobacco campaigns may have led many to see lung cancer as self-inflicted. That stigma keeps some families and patients from speaking out, while corporate donors shun the disease, and some policymakers question whether scarce research dollars should be devoted to a smokers' illness.

In fact, an estimated 15 percent of lung cancers are diagnosed in people who never smoked. If lung cancer in people who have never smoked were considered a separate disease, it would still be the sixth-leading cancer killer in the United States, ahead of liver, ovarian, and esophageal cancers. Researchers estimate that roughly 50 percent of lung cancer cases involve former smokers who quit the habit years ago.

"This is a public health problem that needs to be addressed regardless of how it came about," David Carbone, a leading lung cancer researcher at Ohio State University, said. "We need to take care of those who are sick and need to do everything we can from a public policy perspective to reduce the number of people at risk in the future."

Recent breakthroughs in cancer genetics and lung cancer screening have added urgency to advocates' calls for more money for lung cancer research, which will get $231.2 million this year from the two main federal agencies funding such work. "We are at a precipice where we could really break through," said Kim Norris, president of the Lung Cancer Foundation of America in Ulm, Minn.

But these advances have come at a time when funding for all research is tight. And many influential scientists balk at letting pressure from advocates influence research priorities. In their view, it could set the entire cancer research field back by creating a quota system for research on specific cancers that could divert funds from the most cutting-edge science.

Part of the challenge is that lung cancer is so deadly that there is no critical mass of survivors to raise its profile. Most people are diagnosed at an advanced stage and die within six months, said Jeffrey Borgia, a cancer researcher at Rush University Medical Center in Chicago. "There's not much time to fit a walkathon in," he said.

In contrast, breast cancer advocates have raised millions through events from road races to galas. The White House is lit in pink each October for Breast Cancer Awareness Month. Pink ribbons decorate items from pistols to fried chicken buckets, becoming so common that some wonder if the cause has become too commercialized. Lung cancer groups, however, have struggled for attention. In fact, the original color for lung cancer ribbons was clear, as in invisible.

"Every single corporation wants to have a pink ribbon on their product, but there's nobody who has raised their hand for lung cancer," said Linda Wenger, executive director of the New York-based Uniting Against Lung Cancer research foundation.

In the summer, advocates released an ad campaign aimed at shocking the public into examining its biases against people with lung cancer.

Posters featuring a young man with geeky glasses and a plaid scarf popped up across the country. "Hipsters deserve to die," they read. "Cat lovers deserve to die," read another.

The point was provocation, said Kay Cofrancesco, a spokeswoman for the Lung Cancer Alliance, which sponsored the ads. When a person hears that an acquaintance has lung cancer, advocates say, a question immediately springs to mind: Did he or she smoke?

The answer often is no. Yet the stigma persists even though lung cancer among nonsmokers is rising, with women accounting for two-thirds of such diagnoses.

One famous example is Dana Reeve, the singer-actress and widow of Christopher Reeve, best known for his role in Superman. A non-smoker, Reeve was just beginning to emerge from the grief of losing her husband when she was diagnosed with Stage IV lung cancer at age 44; she died in 2006.

Many lung cancer victims who are former smokers blame themselves. Karen "K" Latzka, a consulting executive in Hawaii, started smoking when she was 16. Between classes, she'd head to her school's smoking area and light up a Virginia Slim, whose ads featured the type of elegant businesswoman Latzka wanted to become.

She smoked for 20 years before quitting. But in February 2010, a dozen years after she quit, Latzka got the dreaded diagnosis: lung cancer.

"The automatic response, even from myself, was that I deserved it. You feel almost as if you are taking resources away from people who maybe deserve it more," said Latzka, who eventually overcame those feelings of guilt.

Yet blaming smokers who fell prey to cigarette marketing seems inconsistent. After all, society condemns tobacco firms for deceiving customers and even maximizing the addictiveness of cigarettes.

The public should "vilify the tobacco industry instead of vilifying patients," said Carolyn Dresler, an official with the Arkansas Public Health Department.

Lung cancer can be caused by such factors as exposure to radon, asbestos, and other toxins. About 10 percent of deaths are linked to heredity, said Ann Schwartz, a researcher at Wayne State University in Detroit.

Wider understanding of these factors could make all the difference for nonsmokers like Barbara Densen of Summit, N.J., who has battled lung cancer for three years. Her husband, Rob Densen, shared a comment she has often made: "Smoking didn't cause my lung cancer, but it's probably going to kill me."

Many lung cancer advocates and researchers have called for a reassessment of how money is distributed at the country's largest funder of cancer research, the National Cancer Institute.

NCI research grants are the most important financing a cancer researcher can get. But the NCI's funding, allocated by Congress, has remained nearly flat since 2003, though it did get a $1.26 billion boost from the stimulus package of 2009.

Congress does not dictate how much NCI can spend on each type of cancer. Instead, NCI funds the cutting-edge science most likely to move the entire field forward.

Lung cancer receives less funding than other cancers under this approach, too. In fiscal year 2012, the NCI will devote $221 million in grants to lung cancer and $712 million to breast cancer, according to National Institutes of Health estimates.

NCI officials caution against reading too much into these numbers. Most of its funded work is basic research applicable to many types of cancer. The institute also funds tobacco control and financed the National Lung Screening Trial, a multi-year study that showed that screening smokers with low-dose CT scans reduces lung cancer deaths.

Cancer research is increasingly focused at the molecular level instead of on organs. Researchers now know that cancers at different sites in the body can be caused by some of the same genetic mutations. But a single mutation can behave differently in different organs, so it is still necessary to look at particular cancers such as lung cancer, Carbone said.

An opposing view comes from Harold Varmus, the NCI's director. He declined to talk to FairWarning, but in a speech at the National Press Club in September, he said he would "object dramatically" to efforts such as legislation that would make NCI set aside specific pots of money for certain cancers. That would "take the decision-making about grant-making out of the hands of the NCI and [put] it in the hands of advocacy groups," he said.

Given the sheer number of lung cancer patients, drugmakers have a big interest in developing new treatments and screening tools. There are now more lung cancer drugs in development than drugs for breast, prostate, and colorectal cancers, according to the Pharmaceutical Research and Manufacturers of America, an industry group.

But those efforts have far to go to help most patients. Drug makers rely on NCI-funded research to advance.

Borgia, the Rush researchers, has watched nervously as the lack of funding drives peers from the field. He was hired with four colleagues who have all lost their jobs from lack of funding. A foundation grant has kept him afloat. Still, he'll be gone, too, if he doesn't get a big federal grant or a drug firm contract. "My neck is in the noose next," he said.

Borgia is working on blood tests to make lung cancer screening safer, cheaper, and more effective. He said that, while a cure is far off, researchers have made advances that could save tens of thousands of lives. "That's here right now. You just have to invest in it."