Lung cancer programs receive a fraction of the grants devoted to types that take fewer lives, data show. The stigma of smoking looms large.
by Bridget Huber
This article was originally published in The Orange Country Register on November 15th, 2012.
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.
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 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 brought breast cancer to national prominence.
The stigma of smoking is largely to blame. Anti-tobacco campaigns have done their job too well, leading many to see lung cancer as self-inflicted. That stigma keeps some families and patients from speaking out, while corporate donors stay away from the disease, and some scientists and policymakers question whether scarce research dollars should be devoted to a smokers' illness.
But an estimated 15 percent of lung cancers are diagnosed in people who never smoked. If lung cancer in these people was considered a separate disease, it would still be the sixth-leading cancer killer in the U.S., ahead of liver, ovarian and esophageal cancers. Researchers estimate that an additional 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," said Dr. David Carbone, a leading lung cancer researcher at Ohio State University. "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.
But these advances have come at a time when funding for all research is scarce. 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.
Carbone, however, says unless a portion of federal funds is specifically directed to lung cancer, advances in the field will remain baby steps. "We didn't send people to the moon because we happened to have a rocket ship sitting around. We sent people to the moon by saying, 'That's what we want to do.' And then we figured out how to do it."
Making that moonshot will mean convincing the public and policymakers that lung cancer victims are worthy of support. Part of the challenge is that the disease 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 everything from road races to galas. The White House is lit pink each October for Breast Cancer Awareness Month. Pink ribbons have been attached to items including pistols and fried chicken buckets, becoming so ubiquitous that some question whether the cause has become too commercialized. Lung cancer groups, however, have struggled to attract attention. The original color for lung cancer ribbons was clear – as in, invisible.
Perhaps the best example of how strong advocates can spur scientific research is the Defense Department's medical research program. In 1992, the National Breast Cancer Coalition, led by a breast cancer survivor and lawyer Fran Visco, persuaded the Defense Department to create a breast cancer research program funded by Congress. The resulting Congressionally Directed Medical Research Program has been allocated $2.8 billion for breast cancer research in the past two decades.
But even though the armed forces skew heavily male and military members smoke at high rates (cigarettes once were included in soldiers' rations and have been sold at cut-rate prices on military bases), it was 17 years before the program began researching lung cancer in 2009.
"It's really challenging now. There just isn't a champion," said Regina Vidaver, executive director of the National Lung Cancer Partnership.
The stigma problem
Before it can find its champion, lung cancer will have to shed its stigma. Last 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 began popping 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, she said, 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 these diagnoses. One famous example is Dana Reeve, the singer-actress and widow of Christopher Reeve. A nonsmoker, Reeve was just beginning to emerge from the grief of losing her husband when she was diagnosed with stage 4 lung cancer at age 44.
Yet blaming smokers who fell prey to cigarette marketing seems inconsistent – after all, society condemns tobacco companies for deceiving customers and even maximizing the addictiveness of cigarettes. We should "vilify the tobacco industry instead of vilifying patients," said Dr. 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 lung cancer deaths are linked to heredity, said Ann Schwartz, a researcher at Wayne State University in Detroit. Yet lung cancer's image as solely a smoker's disease can undercut support for research that looks at other causes, such as heredity.
Changing the money
Many lung cancer advocates and researchers have called for a reassessment of the way money is distributed at the country's largest funder of cancer research, the National Cancer Institute.
Research grants from the NCI 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 an additional $1.26 billion as part of 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 of cancer research forward.
Lung cancer receives less funding than other cancers under this approach, too. In fiscal year 2012, the NCI will devote $221 million in research 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 the research it funds is basic research applicable to multiple types of cancer. The institute also funds tobacco control and financed the National Lung Screening Trial, a large, multiyear study that showed that screening smokers via low-dose CT scans reduces the number of lung cancer deaths.
But some researchers, like Carbone, say the problem with the NCI's prerogative of funding the most advanced cancer research, regardless of what organ it involves, is that research on some types of cancer is further along than others. Breast cancer, for example, has been better funded for longer and had earlier breakthroughs that attracted more top researchers and more funding, from the federal government and other sources. "The infrastructure in the one disease is better than the other. It's a self-perpetuating problem," Carbone said.
Cancer research is increasingly focused at the molecular level instead of at the organ level. 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.
The other side of the argument is represented by Dr. Harold Varmus, the NCI's director. He declined to be interviewed, but in a speech at the National Press Club in September, he said he would "object dramatically" to efforts such as legislation that would force the NCI to set aside specific pots of money for certain cancers. This approach, advocated by some groups over the years, 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.